The Life and Times of a Mom On WheelZ

Snapshots of "Benny and Destiny's World Homeschool"

2012-01-25T21:42:00.004-07:00

It's no Secret - I love teaching my children and taking a 'non-traditional' approach to education. While schools are cramming academics into kid's brains (which they may or may not retain, much due to the ridiculous standardized requirements that teacher's are forced to meet nowadays), I'm nurturing and educating my kids in using a "child-centered approach".

Benny and Destiny both do some worksheets, but as much as we can, we learn three-dimensionally. For example, check out these clocks that Benny created, using specific requirements set by me...

Check out these number counting worksheets Desty did at the library the other day...

Here we all are studying away...

Benny doing more math...

Benny's favorite picture of himself at Patchwork School...

And some random cool assignments...

Both kids have authored and illustrated their own books, which have been digitized. I'd love to share these amazingly creative stories on here, but I haven't figured out how to attach PDF's to blogspot...if it's possible, please enlighten me...

A Few Books That We Are Enjoying
Burly and Grum and the Secret City
and
Beyond The Forrest (A Burly and Grum Tale)
by Kate Tenbeth
Who Was Martin Luther King, Jr.?
by Bonnie Bader
The Berenstain Bears and Too Much TV
by Jan Barenstain
Garbage! Monster! Burp!
by Tom Watson
Better Than You
by Trudy Ludwig
The SkippyJon Jones series
by Judy Schachner
And last but not least...
The Secret Zoo series!!!
by Bryan Chick

Of course, Benny's addicted to the Captain Underpants series and Desty wants to read anything about Love or Bunnies!

- Posted using BlogPress from my iPad

Pride

2012-01-18T23:12:00.002-07:00

Benny spent the day on a wonderful playdate with a new friend and his new friend's father. He made this new friend at The Patchwork School, and this was his first playdate from his new school, so it was pretty special!

This evening, on my way out to my first Patchwork School "Learning Dialogue", I gave him three assignments to do before bed.

When I returned, my son handed me this report...

I hope you can read it...it's pretty impressive!

We began studying Martin Luther King, Jr. on January 8th. Fortunately, Benny was so enthralled in the book, Who Was Martin Luther King, Jr., all 116 pages, before everything was put on halt on the 10th for Desty's five day hospital fiasco. He got so much out of it - he could actually imagine the sit-ins, the non-violent civil disobedience and the injustice of inequality - moseso because of his experience marching in Washington, DC and Chicago with ADAPT, and seeing those arrests. He'd get ecstatic over mention of the Lincoln Memorial and the Capitol.

His understanding made my heart swell!

And last night, we were finally able to watch "Martin's Big Words". He had to put MLK, Jr.'s quotes in chronological order.

Halfway through, he asked if we could watch it a second time!

We still have a MLK, Jr collage poster to do, and both Benny and Destiny will be making a "I Have A Dream Cloud" this week.

Desty began school the day after she was discharged. Check this out...

And on Tuesday, she went to Patchwork School for 1.5 hours and learned enough to drive!

- Posted using BlogPress from my iPad

I'm the Luckiest Mother in the World!

2012-01-05T08:02:00.003-07:00

At 4:38 this morning, I lay on the edge of my bed with one child's arm and leg over me, and the other child sitting in the Purple Lover (my favorite rocking chair!), leaning within three inches of me, sucking down some Albuterol and Pulmicort from his nebulizer - works like magic! During these few minutes, I had this thought: "Oh my gosh, I'm the luckiest mother in the world!" Generally, not a common thought about me, but it's true! That doesn't mean that life as I know it is easy, or that it doesn't royally suck sometimes. But I have two kids that pump my heart, and we are able to do things that we shouldn't be able to do.

Such as attend The Patchwork School. I looked at this school last year but thought I could never afford it, and thus never pursued it. Well, in December, I pursued it and it was a match made in heaven, both financially (the scholarship they offered to us and philosophically! Literally a miracle from every single aspect.

Do you know how it feels to go from being told we are a major liability in public school thought, to being invited and actually told our family is an asset to a community?!?! Well, grand!!!!!

My intent was to enroll both kids into Patchwork two mornings per week. To give Destiny a group educational experience in a compassion-based, free environment, and to de-institutionalize Benny, and sort of 're-define' his self-worth.

Desty was able to visit the school last month, and she kept telling her big brother, "Don't be scared! This school is awesome!". Benny was reluctant, so I told him to try it for one month; if he didn't like it, I wouldn't send him.

Here they are on their first day of Patchwork School...

After one morning at Patchwork, my son decided to withdraw from Horizons (his charter school) completely! Now both Destiny and Benny will attend Patchworks on M/T/TH mornings and homeschool the rest of the time.

Let me tell you what "Benny and Destiny's World School" involves the first couple of months! - on top of my reading/writing/math/social studies curricula, Benny is in an agriculture program on a farm, a science class and a Lego Robotic class. Both kids are going to Homeschool P.E. and Homeschool Rock Wall Climbing at the local Rec Center, plus they are enrolled in Saturday classes each month at the Denver Museum of Nature and Science. Did you hear Benny dissected a chicken wing and a cow's brain last month at the Denver Museum? Pretty cool for a second grader!

Playdates with Benny's friends from Horizons will be the best! Sleepovers are on the calendar, as is bringing his friends along to museum classes!

And after one morning, he talks about kids at Patchwork School by name!

Patchworks School ROCKS for Destiny, as well! Destiny was NOTon her best behavior, but they were incredible at working with her, not as a child with special needs, not as a 'medically fragile' child, nor as a behavioral problem, but just as a kid (Diastat ready too!) They are about freedom within safe limits, not control nor manipulation to get her to comply with a system. It's really wondrous!!

When I picked Benny and Destiny up at 12:30, Desty quickly fell asleep in my lap...and slept for hours...ya, public school is not for her...

Yesterday was Benny's last day at Horizons. It is sad. Horizons is the only public school option I'd consider, and we already miss some friends. If our lives were different - it'd be a good fit. But, I know too well now, that life is fragile...and I have to weigh my future regrets...

TA-DA!!

- Posted using BlogPress from my iPad

Bringing in the New Year With A Heart-Full of Thanks!

2011-12-31T21:44:00.002-07:00

I sit here in a room at Little America in Wyoming, watching Phineas & Ferb with my super happy boy, my daughter, our "Bucky" and my dog.

It's New Years Eve, I think, and I am feeling the urge to post. Most people are looking forward tonight to the possibilities of 2012 and committing to resolutions. I'm not so into that sorta thing. I see life in 2-day segments. I am so focused on surviving and thriving in the moment - my simple brain just cannot absorb much else!

Every New Years I just feel grateful. It's like having 2 Thanksgivings a year in my head, and it's wonderful!

We are just ending a fantabulous!! vacation in Utah. Of course, I'm thankful for the people that made our time there both possible and so very special.

But there is so much more. Here is a quick, not-very-well-thought-out, list:
- I'm thankful NOT to be working!
- I'm thankful for the addition of Tank, my very loved baby cow!...my personal psychiatrist and best friend!

- I'm thankful for pictures and the power of memory.
- I'm thankful for the opportunity to be so involved in my children's education!
- I'm thankful that they want that kind of relationship with me.
- I'm thankful for the great opportunities available to us...and for scholarships!!
- I'm thankful that Destiny has a diagnoses, so we have some answers.
- I'm thankful for the hope of treatments for my D.
- I'm thankful for technology giving me so many support networks.
- I'm thankful for our accessible van.
- I'm thankful for my IPad!!! And BoxWave Stylus'!!!
- I'm so thankful for the many new friends I have made in 2011.
- And for long-time friendships!
- I'm thankful for Buck's somewhat odd position in our family! I love this new pic!

- I'm thankful for good child care givers, and really need to clone them!
- I'm thankful for life, love and that miracles happen every day in our family.

I feel very blessed tonight!

- Posted using BlogPress from my iPad

Location:Bringing in the New Year With A Heart-Full of Thanks!

I Belong In The Zoo!

2011-10-09T20:19:00.001-06:00

Is it possible to enjoy a miserable time? I think it is....

Yesterday I took Benny and his friend to the zoo. They played in a warm class, doing tie-dye, touring the tropics exhibit and learning about VENOM!

For two hours...

This is what I did...

LOLOL! My friend, the boy's mom, gave me a way out of taking them because it's been such a sleepless week for us, but the crazy person in me said, "Oh, thank you! But don't worry - we're going no matter what! I planned for Dest to be tended so I can take the boys. Benny needs me too..."

And no matter what I meant!

Immediately after dropping the boys off at their class, I almost fell asleep on a toilet in the men's bathroom - don't ask! ;-)

It was so cold and uncomfortable, my bones hurt, I was so tired, etc., but I kinda felt like I was doing something naughty, and THAT, my friends, was cooooool! No one was there - I pretended we snuck into the zoo......

That, on top of listening to these two seven year old boys chat away about things that'd alert the FBI, really made a miserable time FUN and worth it!

It was a little bit of 'normal', if I dare say.

- Posted using BlogPress from my iPad

Stickmen and Homemade Space Shuttle

2011-09-25T20:05:00.004-06:00

Draw a STICKMAN! Seriously - did you enjoy that as much as I did?! (Make sure you clicked the link ;-) for your adventure! Cheap and simple entertainment! Here's my big headed stickman...

Our study of the rainforest ended, and now we are in space. My logic is that in order to study the solar system, 'ya gotta have a way to get there...thus, Destiny needed a Space Shuttle! Between Buck, Destiny and I, we engineered the "Destiny 5" (hey man, in kindergarten, this IS logic!)

This video took place a couple of weeks ago. Today, here are both kids just before our launch to the moons!

Next step: making paper mâché of each planet! This one's gonna be as much a lesson for teacher as student! I accept all advice on this craft... ;-)

- Posted using BlogPress from my iPad

Location:Home!

Some Fun Happenings Despite Difficult Times

2011-09-21T20:51:00.002-06:00

The Sunday before last, we had home school with big brother, Benny. It was our big butterfly lesson.

We first transferred our Cocoons from their jar to their Butterfly Habitat net.

We then glued butterfly coloring sheets onto construction paper, cut the butterflies out, painted half, folded it symmetrically and VWALA! We had symmetry!

We then drew symmetrical lines down our faces!

We also created butterfly life cycles!

We had such a neat learning experience! Benny points out symmetry all over the place now.

After two and a half weeks of raising our butterflies from larva, it was time to release them to the world. This was Destiny's job, and she did awesomely! Watch this video...

Benny went on a 3-day, 2-night field trip to Keystone Science School with his class.

He had a wonderful experience and came home talking up a storm! He couldn't really remember what he learned but he definitely remembered hiking for nine straight hours (LOL - Ya Right!) and all of the fun games he played with his friends! Oh my goodness! - the child REEKED something fierce upon his return! YUCK!

Many of you know that our family has had a difficult few weeks. Destiny's cold triggered the progression of her Dravet Syndrome and we spent much time in Urgent Care and Children's Hospital.

Today, though, we went to Watercolor Wednesday at World of Wonder Children's Museum and had a great time! Pics!...

Tomorrow evening I will have Wi-Fi back at our house, making blogging much easier! YAY!!

- Posted using BlogPress from my iPad

Field Trips and Girls Basketball

2011-09-09T17:46:00.003-06:00

SCHOOL OF LIFE

We went on a family field trip yesterday morning to our local fire department. Seriously, it may be one of the best things we've ever done - it could not have been a more meaningful experience for each of us.
I laugh...and I cry...Three of the five firemen on duty knew my sweet Little Destiny!

The firefighters/EMT's were incredible wonderful to give each of us what we needed.

Destiny spent nearly the entire hour in the Ambulance, getting familiar with all the gadgets, and doing a bit of play therapy in there. She also learned about calling 9-1-1.

Benny got recognition for being the Super Big Brother, and too often, usher for the firemen when they arrive at our house. He was all over every vehicle, asking very complex questions about each and every tool. He soaked it all up like a sponge!

I was able to present a clear picture of who we are — HAHAHA - when we're not in crisis mode, give them (and even dispatch) valuable information about our needs, and also ease some of my concerns.

Glorious!!

Before going, we created the following (very cute!) list of ten questions:
1) Do you really have a dog here? (no, but they're working on convincing the chief! ;-)
2) Do you have a family? (yes, they are just regular guys...48hr shifts)
3) Do you ever feel afraid? (yes)
4) Do you ever help the policemen? (Quite often)
5) Why do firemen always come before the Ambulance and paramedics? (They have EMT's on every firetruck and all of the same equipment to do everything an ambulance can except transport)
6) Do you feel sad when you see someone hurt? (yes, but usually they can help them, and that makes them happy!)
7) Can we ride the fire pole? (LOL they want a fire pole, too!)
8) Can we go in the firetruck? (Absolutely!)
9) Do you ever get lost going to a house? (no)
10) What happens if you get two calls at once? (the next closest crew goes to the second call)

And, I just have to share this video of our Basketball Team!

- Posted using BlogPress from my iPad

PAC MAN vs. THE TAMINATOR!

2011-09-04T15:52:00.003-06:00

When the children are in bed, and the likelihood of a seizure is low enough that I am comfortable leaving the bedroom for 30 minutes...this is what goes down, Ladies and Gents!...

PAC MAN

VS.

THE TAMINATOR!

I can't help it - I take my gaming very seriously! ;-)

The kids don't know about this...I'm very careful to put the Plug & Play joystick away immediately - like nothing ever happened. Shh! The graphics on these old video games are a sure seizure-inducer (an idea for our next EEG - LOL! - but Desty doesn't seem to waste any time seizing on record...)

Playing PAC MAN is definitely one of my favorite childhood memories. I only need to control the joystick - no button-pushing required. My dream is that one day, PAC MAN can be recognized by infrared in my elbow joystick...then I could really eat me some ghosts!

Aleeza? Friends at ATP? Are you up for a project, and blast to the past?

Thanks to my 'ALMOST brother-in-law' for giving this joy back to me after decades!
- Posted using BlogPress from my iPad

No More Baths (ADAPT is mentioned)

2011-09-03T11:10:00.002-06:00

Below is Benny's video response to the wonderful movie,"No More Baths". Make sure you watch part two, as he relates the movie to his life experience, ever so briefly.

Part One

Part Two

As Benny watched this movie, he was at the end of his seat, very emotionally invested.

Proud Mother Alert!

- Posted using BlogPress from my iPad

When Life Gives Us Lemons...We Make Lemonade!

2011-09-02T23:46:00.007-06:00

I have been listening to Destiny's Musical practice CD too much lately, thus this post's title. Last November, she was a clown in a local Children's Musical, "Circus Circus". This past spring, she was going to be in a musical about fish but I ended up pulling her because her health was so completely unstable :-(. Alas! Now she is back for a round of Lemonade!

When I see her in practice, enjoying it, really picking up what she can, my heart feels like it may implode! What a total difference not having absence seizures makes, while in that type of group setting!

She LOVES it, I love that she loves it, and it can be counted for K Language, Social Studies and P.E.! As I've heard several times now, a musical has three components: 1) Singing 2) Acting and 3) Dancing. It truly is magnificent, and it's her very own.

There's a part in Lemonade! when someone shouts, "Someone call a doctor, someone get a nurse!" Every time she hears it, my daughter bursts out laughing and repeats it over and over! Unfortunately for Desty, she relates on a deep level...The magic in this is that the teacher is giving her that line, and for once Destiny will have the control; she won't be the one that needs medical attention in the musical. HeeHeeHee!

Destiny also is in Biking, and has already gone to one of many Homeschool Days, we have memberships to the zoo
a few museums, gardens and Discovery Days. Benny's kindergarten teacher whom I absolutely ADORE is a natural creative genius and she's doing three hours a week of pure creativity/crafts with Desty - which I'm so so thrilled about!

So, once in awhile, when I tell people I'm homeschooling her, I sense their concern that Destiny is missing out on socialization, or that she is being segregated in some odd way. Well, let me set the record straight, right here, right now - Destiny, and many other children who are homeschooled, get much more socialization than they would sitting with the same thirty children day in and day out, in the same environment, PLUS these kids avoid some of the pressure a class situation can produce. Lonely, it most certainly is not!

I digress...(saving my sharp opinions about stigmas for another post. I want you all to see how totally and completely blessed we are here!)

I don't teach by any one curriculum. I have gracefully by-passed the stringent constraints of the school district by enrolling Destiny into a private school that allows for homeschool with whatever curriculum I choose. I refused the state's "online school" because if I'm going to teach my child, I want all of the responsibility, and I certainly don't want to be micro-managed in this.

It's so funny...Before making my decision to homeschool Desty, I heard how easy, fun and natural it is from half the folks that knew I was considering it, and the other half warned how grueling and how much work it would be (I'm betting those friends had to deal with the district a lot...)

Homeschooling Desty is, without a doubt, the most fun and fulfilling think I believe I've ever done! My driving principle in teaching Destiny is that life is a natural school, and living to the fullest promotes learning. Yes, I have to prepare, especially when I include Benny in our school, but honestly it is not a lot. And I'm so much more 'in-tune' with both kids now; that makes it even easier. And they love it! They want school into the evening!

Benny is still at his school, but last weekend he begged for homeschool...I think I've been 'teaching' every day for two weeks! And then, he caught a cold, missing Tuesday through Friday of this week. His teacher sent home some of his work, which he quickly finished, and I created some lessons for him. He misses his compadre, Sam, but it's been a fun sick-at-home four days. He really misses Sam! LOLOL!

When we are not sick, we are out in the world learning through experience and we are home creating. My friend called Desty's school a World School - it really is. Take a good look at the pictures throughout this entry. This is our school! Everywhere! My Destiny knows when to use a "Mama A" and a "Baby a". I was wondering how I'd ever explain that! To me, it seems so silly, at first impression, why there would be two of the same letter that are different. She thinks nothing of it! VWALA! - and the rest is a game! I'm beginning to think in Dr. Seuss verse ;-)
I just have to share one of the things I'm totally stoked about, for those of you who aren't Facebook addicts, and then I'll have to leave you on a sad note (after all, this IS part of my therapy! HA HA HA! ;-)

Pen Pals! Destiny has three - all Dravet Angels! - one in CA, one in IL and one all the way in New Zealand! And, as of tonight, Benny has a Pen Pal in Australia, whose cousin has Dravet! (of course, he wanted in on the FUN, too!

Now, comes my sigh...Destiny has her first cold in a long time - a simple cold, yet brutal. Seizures galore, choking, labored breathing, cognitive and coordination issues again. It's okay...I know that as long as we keep her from status epileptus, she'll probably bounce back as soon as the cold leaves. But it's painful to watch and relive. On her Diet, there aren't many decongestant options that are safe. She lacks the power to clear her nose. Today as she napped, we manually held her mouth open so she could breathe easier, guarding off another seizure. I keep reminding myself, "This too shall pass..."

Wait! I can't/I won't end on that note! Watch this clip...
This nice garden caretaker took my eager little girl in to feed the ducks!

- Posted using BlogPress from my iPad

Saturday Surprise

2011-08-20T23:17:00.008-06:00

This is my blog, my story as a woman with a disability, as a divorcee, single mother, and so on. Basically, this is my autobiography of my life's evolution as of the date posted. I see professional blogs and I'm quite envious of the ease with which the author shares their honesty. (I should say that I'm usually glad I don't know the blogger because I wouldn't want to be a subject matter!)

My fear of being harshly judged for my thoughts, feelings and actions is dwindling as I gain more and more confidence in myself. I think about how difficult it has been in the past to hide certain decisions I have made, how much energy it drained from me, and the internal anguish and loneliness it caused. And how liberating it was to finally be able to tell people, and accept their support. I am done being ashamed.

This is my blog, gosh dangit! And that's what I'm gonna do! After all, no one called Child Protection when I let my 'medically fragile' daughter go down a Zip Line! LOLOL Sorry! ;-) The thought did cross my mind!

My point is: This is my real life!
--------------------------

Well, hmmm, where do I begin tonight? Once upon a time, I was told, "I'm positive, and so are you!" and my life was forever changed. The positivity that my doctor was referring to has turned into a 7-year-old boy, the Sonshine of my life and grey in my hair. He's in the second grade now, his body slightly more ill-proportioned with each passing month - which makes me happy and nostalgic all at once. Nowadays, you can expect him to be strutting around with a bright red Mohawk atop his ever-big head. Today we were spared the Mohawk.

Suddenly this child of mine is trying to convince me to home school him, alongside his sister. Hold on, my dear readers! - it's probably not going happen. I'm going to take the next few weeks to give him time to settle into his second grade class. I'm thinking that once he's settled and knows his place in class, he'll give up the idea. However, I will not refuse to evaluate the idea with him. In fact, I believe there's a great teaching lesson in this for both of us.

I can think of several pros and cons of teaching him myself off-hand. But I want to really think it through, determine if I have it in me to teach at two different levels...and not get a 'Benny break', and lose a lot of my one-on-one time with my Destiny. I'm feeling a bit stingy about that aspect.

And since Benny wants to try home schooling, we are going to have school next weekend and the following weekend to test the waters. He will be creating his own Pro/Con chart on the subject. LOL I'm thinkin' it will be a non-issue thereafter! ;-)

(I really like his teacher this year, so hopefully things will go smoother for him in the coming weeks!!!! Crossing all digits! ;-)

Ultimately, it is my decision based on what I believe is best for Benny.

Today we went and watched the new Winnie the Pooh Movie at Cinema Grill. If you want to take a kid to a kid movie in a family-friendly theater for a special experience (opposed to screen quality!), This Is The Place! And it's cheap, too! $2 admission, and then you order restaurant-style. We got a movie, lunch and dessert for less than the price of admission to a regular movie theater!

It tickles me to no end to hear my growing boy squeal with delight watching our Hundred Acre Wood Friends!

After the movie, we checked out the vintage car show in the same parking lot. It was pure Awesomeness! I really love suped up trucks!

Neither kid of mine could accept that our Chevy Town & Country mini-van is not nice enough to put in to show! It was hilarious! I made Benny ask this rough looking fella what kind of car he had...Benny came back to me, shrugging, "He says it's a caaar vet". I try not to laugh at my kids, but once in awhile, I just can't help it! So Benny kept repeating himself, and I couldn't stop laughing!

I decided I wanted even more cheap entertainment, so we stopped at a Outdoor World (comparable to Cabellas). For free we get a museum, an aquarium and a rock wall - as good as an amusement park!

This is my son climbing the rock wall...

Proud Mommy I Am!

- Posted using BlogPress from my iPad

Desty's First Day!

2011-08-18T14:43:00.001-06:00

Today was Desty's first day of her Kindergarten Adventure!!!! It was absolutely wonderful, I tell 'ya! We were scheduled to begin next Monday, but she was having trouble waiting, watching me create her curriculum, and I was having trouble because she was...Thus, we began! (Don't ask me when I'm gonna have time to continue my plan!)

This is Destiny playing "A-E Driveway Hop"!
She practiced her capitalized "A's", we talked about "Alligators", "Apples", "Airplanes", "Ants" and pronounced different "A" sounds. We're going to focus on the letter "A" for three days, then "B", "C", "D" and "E" for three days each, and then we will spend a week reviewing letters "A" through "E".

We began our rainforest section. Can you believe my daughter knows that birds and monkeys live in the Emergent, and the Canopy is the roof of the rainforest?! I didn't even know that until three days ago! On a 3 foot piece of banner paper, we are creating a rainforest of our own. Today, Desty and Buck began by making grass for the rainforest, trees and flowers. This is going to be a week and a half long project, and we are going on a couple of field trips to experience the climate and some of the creatures that live there.

Here's some Magic for you: We are awaiting the arrival of catapillers so that we can raise butterflies. The habitat was out on our kitchen table while Destiny and I were watching Pocahontas. Apparently, a butterfly landed inside of the net, and Buck quickly zipped it closed. He brought it downstairs to us, but I didn't notice our beautiful friend in it for a good half hour...At which point I screamed like......Benny (LOL) until I figured out what the heck was going on!

This is a cute video of Desty trying to set our new butterfly-friend free.Sorry about the rotation, ladies and gents!

When we wrapped up our school day, you'd think I broke Desty's heart. If she still feels the same about the end of lessons in eight months, life will be goooood! ;-)

"I'd rather die tomorrow than to live a hundred years without knowing you."

-John Smith to Pocahontas

My sentiments exactly....

- Posted using BlogPress from my iPad

Location:Magical Kindergarten Day One

Big Decisions, Only A Mother Can Make

2011-08-14T22:20:00.004-06:00

Last Spring, on May 21st, I sat through a four hour meeting, called an IEP meeting, at the school district. This meeting had probably two dozen people at it, and was all about my Destiny. The meeting was excruciating, confusing, and as far as I'm concerned, a room so full of buearoCRAP that I was suffocating. It was during the tougher times for my girl, when I felt her slipping away with every seizure, every fall, every word forgotten, every heat stroke. I was still working at the time, though my heart was elsewhere.

Destiny's advocates moved mountains for me that afternoon as I felt salt pouring into a wound much deeper than the one made by a hip replacement, or any pain I have ever endured. The school, the accommodations, set in place that day were absolutely necessary for Destiny to be able to attend Kindergarten this year, and for me to continue to work.

Weeks after Desty's IEP, I followed my heart, resigned from my job, embraced my children with all my heart, and took on the responsibility and administration of the Ketogenic Diet for my daughter, which has very literally brought her back to life, in many ways.

I am overcome with gratitude EVERY DAY for this good time the Diet is giving us! Maybe this good time will last forever - I pray selfishly every day for that too. However, if it does not, I do not want to regret anything. I am bound and determined to cherish EVERY moment possible with both of my Kiddos. Being very different personalities, that looks different with Benny than it does with Destiny.

That also means that I refuse to disable Destiny. To the contrary, I want this child to meet and experience the world where she is at - I want to capitalize her abilities, to feed her soul with love and confidence. I don't know, of course, but I'm choosing to believe that the higher she is on life, the smarter she is, the happier she is, the harder Dravet will have to work to bring her down.

Getting to the point!...

I have officially decided to homeschool Destiny for Kindergarten! I will leave you all to your eclectic array of reactions, knowing some will be harsh judging and some will not be surprised and even allow me the benefit of the doubt that I'm doing what's best for Destiny and I. And a handful of you are very relieved that I finally have the courage to follow my heart again and finalize this big big big big decision ;-). Either way, I love you all (especially my newly unmasked KE spies! ;-), and please stay tuned for many many more adventures of this BoulderMomOnWheelZ!

My boy starts 2nd grade tomorrow, and I really believe it'll be a great year! His school really went to great lengths to place Benny with the best teacher for him (& his best buddy!). I'm so excited for him!! I'm so proud of him!!!

Desty starts Kindergarten next Monday!

- Posted using BlogPress from my iPad

Minneapolis

2011-08-06T16:37:00.006-06:00

As I type this, I sit inside Water Park of America , America's biggest indoor water park, relieved (and icky hot!). My boy got busted by a lifeguard, not 30 seconds in these doors for jumping into the river intended only for innertubes. I wasn't scared for him - he's a very very strong swimmer and I watched him weave in and outta innertubes like a champ. I was TICKED - so TICKED at my child's (I'm sorry - I must say it -) stupidity! He'd better be glad we are in a loud, public place, and paid to be here. He gave meaning to the phrase "To Skin Alive".

Here's the best part: A big husky lifeguard saw the look on my face, chased Benny down with his whistle, and walked him back to me...I was so grateful, I could've mauled the lifeguard with love! ;-)

Right now, Benny is off chasin' waves and going down body slides and tube slides and lovin' life. He must check in with me every ten minutes or thereabouts. Destiny and Buck are tubing and waving and having a grand time.

Forgive the absence of Water Park pictures!

Yesterday we spent the day at Nickelodeon Universe and Sea Life. As a little girl, I drempt of the Mall of America. My gosh, rides inside of the biggest mall in America?!

It was more fabulous in real life than I ever could have imagined!!!

I didn't really get to experience the mall, because the attractions were the big bait for the kids, but I threw some thoughts unto my Grandma Mildred, the biggest mall-walker ever...

I, personally, LOVE the Swings!
Desty and I met Dora and Boots. She was so excited, she charged through the fence, interrupting another kids photo shoot! LOLOL It was truly hilarious! I could tell the staff is used to Dora-crazed tots, and gently guided her to the line. (Sometimes, it works to our advantage that everyone mistakes her for a three year old ;-). She was so determined to find out how Dora made her watch, and why she wouldn't talk. I was a little too comfy nestled in Boots soft bosom! - I really wanted to close my eyes and drift...

So! Yes, we had a lot of fun, and made priceless memories. I would not do anything like Nickelodeon Universe again without 2-10 more hands though. I really wanted to ride Orange Streak Coaster with Benny - his first mildly big roller coaster. The staff insisted I needed a "chaperone" on with me "just in case the ride breaks - someone to carry her down". Hello! There are no stairs up there - really people - no one would be able to carry ANYONE down if it stopped. Desty was two inches too short to ride, even supervised, but they were going to make an exception and allow her to ride so that I'd have my "chaperone" on the train. I, of course, refused...there's no way in hell I'd put my daughter on that ride, especially breaking the size requirements, so Desty and I agreed to sulk together while the boys went on it. Benny is over the height to ride alone, but I wanted someone to share in his special moment. The train returned without mechanical problems, with Benny screaming to ride again.

It is hard to keep track of Desty anywhere, as she is a wanderer and lacks safety awareness oftentimes (part of her disability). When you have Benny yelling/begging to go to the thrill rides, and you have Destiny, who runs for every tiny tot quarter ride type thing and walking characters, you've got high blood pressure. Not to mention restroom breaks, water breaks, meal breaks, and it's to loud for mom to communicate, etc. It was fun, but really difficult for Buck and I to manage. Wow! Next time, we take a small army!

I just saw my daughter bodyboarding on Cascade Fall Flowrider!! Oh my gosh! The lifeguard got her on the wave and the water carried her up and down the wave. She LOVED it!! She would've been stuck like that forever though. The Flowrider guard swept in with such grace, gave her her own little swervy ride, worthy of applause, and truly made Dest feel like a star.

- Posted using BlogPress from my iPad

To New Heights!

2011-08-03T01:50:00.009-06:00

Destiny has made a full recovery from last Friday morning's crisis, and both she and Benny have soared to new heights since.

They have picked corn from gigantic crops, been stuck in the mud on a forrest work road and have had to be drug out by a massive tow truck, gone fishin', swimming in Bowstring Lake, gone snail shell hunting, caught frogs and tried to feed them, ran all over a huge lake property with Tank and Tank's new friend,Shadow, peed in a double-outhouse LOL and, last but not least, played in a treehouse and flew through the trees! Literally!!

Watch them go...

Them are my kids!! I'm so proud of both of them, and I'm truly grateful for all of the nice new friends we have made in northern Minnesota!

You all know that I'm the Adventurer, and I desire experiences of all kinds for Benny and Destiny. With Desty's new diagnosis, my desire has grown much stronger...I am pretty optimistic about the future, and I need to know that I'm doing all that I can to keep the good times a'comin'!

One of my favorite moments this trip, was when we accidentally ventured onto a dirt road not meant for vehicle use and got stuck in the mud. Outside, we were surrounded by an unbelievable gang of mesquitos and trees (and whatever lived in them!). After being pulled out by a friendly tow-truck man (who I actually am convinced is an angel - I really don't know how he got to us so quickly...), the jolliest sheriff I have ever met escorted us to our destination for the heck of it. Benny and Destiny, instead of being afraid, now know that if they're ever "stuck", the police and others are around to help. 9-1-1 isn't just for bad seizures and asthma attacks ;-)

We bid Minnesota farewell as it's time to come home....hopefully by Saturday.

- From My IPad

Adventures, Seizures and Bumps

2011-07-29T05:14:00.003-06:00

We are resting in a hospital waiting room in Dickinson, North Dakota. WAIT! - All Is Well! - Or, I can just count this night as a Great Burton Adventure (that I could've lived without!)

Let's retrace the road that we have traveled this past week...

Buck, Destiny, Tank and I arrived in Salt Lake City last Saturday, to pick up a very missed Benny after he spent two weeks with his Aunt, his Mee-Maw and all their family. He had a blast, (and quickly overcame his post-vacation-without-mom trials and tribulation ;-). We stayed in SLC for two nights and it was awesome. Just awesome!

Driving home on I-80, Buck remembered his family reunion is this weekend in Bowstring, MN (I think it was the morning after we were so blatantly discriminated against in Little America, WY - ha! Truly Little America!...). We spent the next 200 miles on I-80 strategizing if and how to get to Bowstring. We hit Rawlins, WY, and our van went north, and the Great Burton Adventure began!

As with any spontaneous extended vacation, there were some initial obstacles to overcome.
-> Desty's meals, Tank's food, we didn't bring a cord for my wheelchair battery charger. No problem! - Just part of the adventure. We conquered these things with smiles on our faces :-)

My smile vacated the premises on Wednesday when Destiny's neurologist emailed me to inform me that Desty's lab results show she if very deficient on a specific amino acid that is necessary for Ketogenisis, and pick up a prescription immediately. We quickly had our local pharmacy transfer the prescription to Billings, MT, and we had to wait until yesterday afternoon to pick it up.

I looked up Levacarnitine on the Internet and one of the side effects is SEIZURES - LOL! I immediately turned to the experts - my fellow Keto parents! As it turns out, lots of Keto Kids are on this drug, but it is a "start with extreme caution" medication. Very, very slowly. Even when extreme caution is taken, many children can't tolerate Carnitine supplements.

On that note, and no thanks to Desty's neurologist, I decided to give her only half the prescribed dose this afternoon.

Today was a wonderfully enjoyable day...we had so much fun together...all of us. I-94 is beautiful!!!!

Tonight Destiny had a 23minute seizure on I-94. It was a pretty bad one. I believe that she is okay because of Mother's Intuition. I heard the DVD Player fall, and I looked back and Tank had his front paws on the bottom of her car seat. Odd, I thought...then four minutes later, a dreadful cry...I knew immediately. Light on, and there she was, eyes wide...I won't detail the next several minutes. Her "Rescue Med" finally worked...in the early days, this drug had immediate results...in the early days. The thing that really concerned me this time was not knowing what a possible Carnitine-induced seizure would present as. If oxygen is needed, where the hell are we?! (Excuse my French...) Does Buck have enough room in this van to do mouth to mouth? We were parked on the shoulder of the Interstate with our hazards on, with an occasional semi rocking the van.

Alas! Destiny's fine, I'm fine, and we will continue on our voyage. Hopefully, she won't even know it happened when she wakes up!

So, why are we resting at a hospital? Because every hotel between Beach, ND to Fargo, ND are full due to the flooding. Thousands of North Dakotans have been displaced and are living in hotels and motels throughout the state.

It is a bit morbid to spend the night in the hospital waiting room, however, my son thought it was pretty cool ;-) I have to monitor Desty very closely with the rescue med in her, and it's not possible in the van.

This was just another bump in the road. I don't get to sleep last night/this morning, but I sure am looking forward to stopping early this afternoon to sleep!

- Posted using BlogPress from my iPad

Destiny Flies!

2011-07-20T10:49:00.001-06:00

My children's wishes really excite me! I have Benny and Destiny convinced that they can tell their mama their wish and it still may come true. Months pass and we still talk about wishes made and how we never know when they might come true. One day a Lego shows up in the refrigerator or Ming-Ming is found napping on Desty's bed.

This is how I get my kicks! ;-)

Then I got kicked!

A few weeks ago, Desty wished she could FLY! She jumped off beds, chairs, ladders, me, other people...She tried to fly with capes and angel wings. This lasted for a few (frightening! ;-) days, and then she finally came to me in a half-cry defeated state, "Mommy, I'm never gonna be able to fly, am I?" Just squeeze all the blood outta my heart! So, I did what I always do when I don't know what to do...I Facebooked it! I have hundreds of wise friends to call upon in these moments of desperation...

And, thus, it came to pass, that on June 19th, Destiny Ann 'flew' at Heritage Square Amusement Park and had a blast!

Notice the death grip I have on her here......that's because she would have taken flying to a new level as the lap bar was several inches above her little legs. I wasn't a happy dragon rider...

On the Ferris Wheel she said, "Mom, it feels like you and me are in Heaven!"

The Ferris Wheel has always been one of my favorites, especially at Heritage Square...It's nestled in the foothills with an old-style Wild West/ Victorian theme - just a beautiful, peaceful scenery all the way around! And such a contrast from the big town thrill parks!

It was a fun adventure! Despite constantly pouring water all over my girl, though, she got heat stroke after only three rides, and of course, clusters followed. We were quite hot, disappointed and heading out when something magnificent happened...the skies became a little dark and we heard roars of thunder in the distance. While others groaned, we shouted for joy!

Blessed Be The Rain!

In 30 minutes, Destiny was a new woman thanks to the sudden cool weather! And she went for another hour until the lightening was way too close and the rides shut down.

I really must break down and buy a Cooling Vest for Destiny NOW! She could be doing so much better without the heat. I long for winter...Hopefully she won't be sensitive to the cold, too! We'll see!

- Posted using BlogPress from my iPad

THIS IS MY LIFE...

2011-07-15T22:51:00.001-06:00

...and I'm Damn Proud!

This is MY Girl, my Destiny! She cracks me up all the time, too! I'd say this is a 'Great Desty Day' - not the 'Best Desty Day', but a Great One. And I'll take anything from a 'Good Desty Day' up at this point.Being on this new alternative treatment, 'Okay Desty Days' tend to be very anxiety-inducing, as I anticipate a 'Bad Desty Day' in which I pull my Dr. Badge out.

What say you?

I could drag you all through my crap this week and last week and the week before and the week before that to get our Keto Team (HA - do two nurses make a team?) to be responsive and give me access to food options and answer basic medical questions. But I won't! Because I love you! The only thing noteworthy, is that when united, fellow people of the world....I do declare..........

We Are The Champions, and We'll Keep On Fighting 'Til The End 

(for our Kids!)

I won this one, and as simple as a Keto Calculator and a urine analysis to rule out kidney stones may seem, both are paramount in the life of this 5 year old child. A child, who before this magic food, had lost her ability to count even to four, stay in a standing position and speak in full sentences much of the time. This is what I'm talking about. Destiny Ann Burton is one of the champions of my world.

YUMMY!!!

2011-07-10T22:05:00.005-06:00

I very recently discovered Beignets, specifically Marnier Beignets. The day before Benny left on his trip to Salt Lake, I introduced him to my sinful delight. This is what he had to say about Beignets...

This is Fine Dining for us! Colttera's only serves these delicious creations for weekend brunch, however, the chef was kind enough to make a special batch the night before just for us!

YUMMY!!

Did you hear that laugh?? Priceless...

I have been wanting to post all week about our fun in the lake last Sunday, and fireworks. It was a very weird week, I can't explain it...just a weird one.

This conversation with my clever boy in preparation of his week with Auntie Chantee and Baby Sophia says it best:
Me: You know, son, it can be hard living with a baby.
Benny: And it can be hard, too, living with a girl with seizures, right mom?
Me: What do you mean?
Benny: Measuring and making all her food right, getting her to eat it all at the right times, remembering all of her medicines, testing her pee morning and night, watching her all the time, remembering her helmet, remembering her life jacket
(I smiled)
Benny: That's hard for you to remember all that mom. Oh, and when she acts weird...

I poked his expanding belly, we laughed and hugged.

It was a bit enlightening to hear from my almost seven-year-old, basically that I have a lot of responsibilities and we are definitely in this together. He didn't even mention all of the non-seizure-related parenting stuff I do. Do you ever do so much in your life, have so many responsibilities, that you don't even know it yourself, or why you are drawing closer and closer to the C-R-A-C-K-I-N-G point? Alas! I shant take all the credit...Buck, best friend/assistant/VIFM (Very Important Family Member) shares in all of this daily kid stuff...

I honestly don't know what happened last week. I do know that I had to race things to camp three times last week after discovering mere minutes after Desty left that I had forgotten to do or pack them.

I'm a tired mommy...someday....oh, someday, she'll be stable enough to go to Auntie Chan's for a week, or something...

Chantee and I actually considered a "Destiny week" this week: I would make and label all of her meals, meds, urine strips, etc., and Chan totally has all my faith. I decided against it, though, because if Desty had a bad day or anything strange happened, it would be very bad if I were 525 miles away. Too soon. Way too soon.

Last post I promised to blog of our fun adventures, but to Keep It Real, Dawg, I'm not in the mood tonight. Today was a good, enjoyable day -- I'm really having fun with one-on-one time with my Fairy Daughter :-). Friday and Saturday were fairly challenging as we dropped Benny off in Grand Junction, CO, and got our first taste of traveling with our new lifestyle. Mistakes were made; it got a bit hairy and was really much longer than I ever expected but I now know how to plan for our next go.

I want to share this enlightenment, and start fresh with a more uplifting and fun post in the next couple of days.

The Oopsy! Badge

2011-07-03T23:55:00.001-06:00

Can a seizure be comical? Until Friday, I'd probably ram you very hard with my wheelchair if you even suggested the mere idea that there's anything positive about a seizure. Well, Destiny proved me wrong (again!).

So, I gave my daughter a very long seizure on Friday, in a full-hearted attempt to "normalize" her. Yes, I have two college degrees but that don't make me smart! ;-) just a good test-taker.

I prepared four menus for Friday, just as I do every day. The dietitians told me that I would need to learn to be creative, but they never really defined what creative might look like. To make an excruciatingly detailed story short, I inadvertently loaded breakfast, snack and lunch with her protein and carb allowances - to make it appear more like her fellow campers meals - neglecting her of burnable fats. Desty burns fats for energy, not sugar and carbs. Friday was an active day at camp, thus she must have been goin' on fumes by afternoon, or her body tried to switch to burning carbs again. Anybody's guess!

Desty took a nap, and wouldn't wake up. She was unresponsive, appearing in a very deep peaceful sleep. I got the call and luckily I was only ten minutes away. I wasn't convinced it was a seizure so I didn't want anything done until I arrived. David, the camp director met me in the parking lot, and I literally raced him to the staff room. As I rounded the corner and saw my baby spread out on a mat, comatose-looking, I allowed myself a free 10-second period of devastation. David picked her up laid her in my lap and I went into action. Pure mother's intuition here...I *think* I felt a tiny tremor...

Okay, this is the funny part...the part that may forever change

how I internalize seizures, especially on this "Magic Food" Diet. We administered the Diazepam and my little girl sat straight up, looked around, stood up pulling her pants up, and cheerfully said, "I'm ready to go back to camp! Where's my other sandal? Hi Mom!". There were about six mouths on the floor, including mine! David's mouth may still be there! LOL! Buck, who has seem most of her seizures, calls it "spooky".

We know this seizure lasted at least 15 minutes, but it could have been more like 40 if it was the duration of her nap. I admit, I shook for a few hours that evening, trying to decide if I had to count this event as a 'daytime seizure', if it happened during a nap. I have since decided, for my sanity, that I don't care because I know the cause, and it was a fairly low-trauma reality check.

Albert Einstein said, "Reality is merely an illusion, albeit a very persistent one."

The Ketogenic Diet is merely another medication - the most effective yet! - not Desty's cure. No matter how effective the Diet is, she still has Dravet. Period. For the time-being, the Keto Diet is the treating mechanism and I am the pharmacist.

Another Keto-mom told me that now, when her daughter seizes, it's probably her fault, and we all do our best and, slip up, pay for it, then we continue.

If the past eleven days are not a fluke, if this Diet continues to keep the majority of my Destiny's seizures under control, then, on occasion, I will gladly where a badge that says, "I gave my daughter a seizure today; what did you do?!". After being through what we have this past year with seizures and the unknown, I embrace the illusion of some control!

I have been wondering if she is growing a bit irritated of the Diet because she knows she had a seizure, so this morning at breakfast I very carefully and briefly explained that she probably had the seizure because I messed up her meals that day. She didn't pay much attention, but tonight at dinner she asked if she could whisper something in my ear...Proudly..."Mama, you know how I had that seizure when you messed up my diet? We all make mistakes, Mommy!"

A promise to my Readers! - My next post will not contain the words 'Keto' nor 'seizure'. 'Lake', 'fun' and 'Tank' will be the key words ;-)

- Posted using BlogPress from my iPad

Ready 4 Anything Around Here!

2011-06-28T16:10:00.000-06:00

It is impossible to fully appreciate the divinity of carbohydrates until one has spent time without them.

- Tammy Burton, June 28, 2011

Not that I have totally given up carbs in solidarity with my daughter, a practically Born Again Child since Saturday. My Dr. Pepper is my main carb/sugar intake now. All mothers need fuel and fixes! But my household is pretty much eating the same menu, with appropriate quantity and substitution shifting. I LOVE IT! Yes, from the time I kiss the kids goodnight, to the time that I get ready for bed, I am playing Lab Rat, practically 'playing with' a table full of food selections, and concocting the precise food portions or rather potions to keep Desty's ketones at a count of 160 morning and night.

This morning with my girl safely on her way to Rocky Mountain Day Camp (the most ROCKIN' DAY CAMP in ~~the~~ ANY universe) and my sickly Benny-boy at my side, Buck surprised me with gooey rich Brownie Mix atop Pancakes! Pure Heaven in my mouth. Thus, the comment above was born ;-)

Directly after this feast of divine manifestation via chocolate, we drove to the doctor. Let me clarify here....One day before Desty's admission to the hospital, Benny spiked a fever and couldn't keep anything down. This virus lasted four days. Then he had six days of health. Last night he became sick again with a completely different set of symptoms. Step Throat with a side of Parotitis, please.

REENACTMENT For Entertainment Purposes

My healthy child will pull in the driveway at any moment, and I will simultaneously scream, "MASK!!!" in a probable fruitless attempt to save Desty from Strep.

Antibiotics STAT!

Oh, for more comic relief from my day...

NURSE: Who takes care of him?

ME: III do...I am his MOM.

NURSE::  How do you take his temperature?

Me: With a thermometer, by mouth.
Nurse Ratched really had to think this through.

Hope and Love

2011-06-25T17:12:00.002-06:00

I believe this Diet is going to be my daughter's recipe for Health and Happiness. And I'm knocking on wood right now, just to be safe, but I am filed with hope. Hope, now that is something astronomical for a mother of a child with a progressive epilepsy disorder to feel. I feel a bit Obama-ish, with my "HOPE" mantra, but today I am officially declaring:

"YES WE CAN!"

Move Over, Mr. President!...

Destiny is the perfect "Keto Kid"! She loves fatty foods, and is just happy (98% of the time) to eat anything that I ask. I think she really understands that yummy food is now her medicine, and MAYBE she won't have seizures after awhile. She is definitely excited that maybe she'll get to ride her bike to the park again.

And the food is getting better! A definite learning curve for her mama that would much rather be hiking, at the park, playing games, pretty much anything than preparing meals. For breakfast she had her favorite blueberries (only 11grams though), 9 grams of bacon, 6 grams of egg (= to one measly bite! ;-), 8 grams of butter straight, 57 grams of what I call Strawberry Yogurt (I mixed Crystal Light with the Heavy Whipping Cream - she LOVED it!!!), and a 44 gram creamsicle (Heavy Whipping Cream and very expensive chocolate sugar-free drops frozen on a Popsicle stick), so now she can have a meal without cream later.

For Snack, she got 13 grams of celery, 10 grams of peanut butter, so we masterfully mixed as much butter as could fit with the peanut butter and heaped it on the little piece of celery. It is Delicious!

Destiny has to eat an insane amount of butter each day and much of the time it's its own side. I think back and Laugh...Less than a year ago, I would totally freak out because she'd sneak big spoonfuls straight from the butter bucket. First, I thought it plain nasty, but more than that, I assumed it would cause cardiac arrest or seizures! Oh, hindsight! HeeHeeHee!!

"Eat your butter, Honey!" I say with a smile.

Today is actually Day Four on the "Magic Food", and I wish you could see her eyes, peeps! - Magically clear and Happy! Almost...(And my deepest hope is that when we are allowed to decrease her meds, there will be no "Almost" I look at her and I cry. LOL! They're used to me crying happy tears! No seizures today - Zilch. Again, knocking on wood...

My good friend led me to a movie called, "First, Do No Harm" starring Meryl Streep. Now, the story behind this movie is worth reading. As I watched the following clips from "First, Do No Harm" I sobbed. It is not Destiny's story, by any means, but some of it is all too familiar. I begged neurology to do an EEG on Desty two/three years ago when she was having febrile seizures, increasing moments of staring, clumsiness, slow response, etc. I was repeated told she'd grow out of it, or it's just her flaky personality. Well, guess what experts? My baby grew into it! And now, oops, my princess has a potentially devastating syndrome. Thanks docs! IF, IF, all day long...moving forward!

Grab the Kleenex Box!

In this next clip, when Robbie says quietly, "I'm excited, Mommy" I see Desty (on bad days)...My heart bleeds ;-(

And finally...

I can only Hope with all of my Might, and Love in my Heart, that this new Lifestyle is the medicine that finally works! With that said, I have to go set up for dinner!

The Beginnings of a Keto Mom

2011-06-24T02:34:00.000-06:00

"This is Sad, and Sick, and Wrong. This is Destiny's lunch for tomorrow. It's chicken, cheese and olive oil...Tasty!"
BLAAAH!

Home from the hospital, we prepped Desty's meals for tomorrow. I tried my best to make up for this grotesque entree buy buying Popsicle Molds, filling them with her 46grams of 40% Heavy Whipping Cream and fake sweetener, and freezing them for Breakfast and Snack.

We Have Ketones

2011-06-22T14:31:00.007-06:00

Forced, weary smile.

First, check out this video from Monday, when she was probably the healthiest child in this hospital with 298 beds.
Ketones are flowing in Princess Destiny's body now; glucose is averaging sixty. Monday night and yesterday morning were very literally filled with petite-mal clusters, and barf. Can you say Raggedy Ann?? Yesterday evening was much better, but a horrible night followed.

Here are a few video clips of Destiny today:

Yesterday we prepared Desty's meals for today.
BREAKFAST: 25g strawberries, 8g egg, 46g
cream, 9g bacon, and 12g butter
LUNCH: 47g cream, 18g cooked carrots, 12g skinless chicken breast, and 18g butter
SNACK: 46g cream, 6g purple grape, 36g beef frank Oscar Myer, and 6g buttery
DINNER: 46g cream, 36g cooked broccoli, 4g processed American Cheese, 8g lean ground beef, and 15g butter

Just one gram + or - is not okay. She is on a 4 fat to 1 carb ratio, gets 1350 calories/day, 20g protein/day and 43 oz of calorie-free fluid/day.

I will test her urine 2Xs a day to chart ketones, and once a week I will check her urine for blood and protein.

Obviously this "Blubber Diet" is not nutrition complete, so pill supplements are imperative - of course, supplements, medications, lip balm, toothpaste, sunscreen, ointments, shampoos, etc., must be 100% carb free!

I could be overwhelmed....LOL...I could be sad and scared and have any number of feelings. Oh who's kidding?! I AM ;-)

HOWEVER, my Love for this child of mine tramps my Trepidation, and if this is a mountain I have to move for this child to have healthier brain functioning and a fuller life, please bring it on, BRING IT ON!

(Please forgive the messy format? IPad and YouTube still have bugs to perfect for blogging.)

The Destiny Diet Launches

2011-06-20T16:10:00.005-06:00

And so! The torture begin! If you're disappointed by my lack of optimism and perkiness, you've never been in my Crocs.

Last night Desty was admitted to Children's Hospital in Aurora, Colorado. Wait! This calls for a very brief backtrack.
My girl has uncontrolled seizures, some other associated difficulties, a genetic mutation, crazy EEG readings, seizure history - put it all together and she has what's recently been referred to as a Dravet Spectrum Syndrome. Why this damn mutation can't give Superhuman Powers - I don't know! With a name like Destiny, she should be competing with SuperWoman or likened to the Greek Goddess Clotho and not fighting for a happy, healthy childhood!

I was pretty okay until we were introduced to Mr. Dysautonomia just a few weeks ago...for a later post!

Here we sit in Room 630, starving Destiny for a Cause. She has failed on so many anti-convulsant drugs that there's only a 5% chance of any new FDA approved medication being effective in controlling her seizures.

(Now, there's a drug that's been approved for ten years in England - the only drug in the world with an indication exclusively for Dravet - but it would come at a deep out-of-pocket expense...for a later post!)

Our aim is to put this child into a state of ketosis so that her body will start burning fat for energy instead of carbs. They don't know why it reduces or eliminates many kid's seizures, but I doubt I'd understand it anyway. Watch these videos About the Ketogenic Diet and Another Great Keto Video.

So here we sit (still! ;-)) in Room 630 purposely making my daughter ill, lethargic, nauseated, waiting for her blood to become acidic, checking her pee every three hours. It is 4:00 in the afternoon and, albeit, in high spirits as my happy little girl usually is, every hour she says in whiney confusion, "When is my breakfast gonna be here, Mama?". She still thinks we're waiting for breakfast, even though we remind her every hour that she'll get four 3oz Vanilla calorie shakes today, a bit more tomorrow and a real breakfast the day after tomorrow.

The funny thing is that today I bet Desty is the healthiest kid in this hospital - seizure-free thus far and she's still burning carbs! ;-).

My son, on the other hand, has had a fever for a third day now, is pukey and generally miserable except that his "hospital" is a kid wonderland and he has a mom and her three adoring teen daughters and their dog nursing him back to health!

Trying to get one kid to STOP puking and feel good, while MAKING the other sick...Great Times, I tell 'ya!

So many wonderful people in our lives!!!

This is the first post I've ever tried to publish from my IPad - YAY! I plan to post lots, minus cool pics and videos, this week to keep folks updated.

- Posted using BlogPress from my iPad

A Tired Boy With Double Cowlicks

2011-06-11T21:16:00.002-06:00

I LOVE THIS VIDEO CLIP!! It completely captured Tired Benny, Reserved Benny, Excited Benny and Mischievous - all in 3.5 minutes.

Following his Failed Attempt to take him on a bike ride to avoid bedtime, we watched this clip together. He immediately burst out

"Mama, I LOOK LIKE SUUCH A GIIIRL!!!!"

And then he asked if he could grow his hair out like mine.

I quickly explained that little boys and little girls that choose to have long hair are also choosing to comb or brush AND wash their hair. Tomorrow's destination: Our Neighborhood Great Clips.

Buzzzzzzzzzz

It was a tough day around here ladies and gents. I contemplated whether to go with a funny or deep post tonight, and decided to just let Benny offer the entertainment...the world just isn't ready for my depth after a day like today. Yes, Desty's okay as I type this...the more we get to know her seizure syndrome, however, the more I must adjust to being okay with the Unknown...for those of you that know me well, you know that I naturally fight against the Unknown.

Just Keepin' It Real, Dawwwg! A Rebirth With A New Birth

2011-06-09T20:14:00.003-06:00

SURPRISE! The Boulder MomOnWheelZ is back, and ready to ROCK THIS BLOG! Warning: It may be a bit of a rocky start, as I live not the same life that I did 2/3/4 years ago when this was a

site...I may lose some loyal readers of the past, with my Proud To Be A Single Mom Mantra, but as Austin Powers would say, "Hey Baby!" and Randy Jackson "Just Keeping It Real (Dawg)"! I had to include the "Dawg" at the end there because well...I just love it! ;-)

Speaking of babies, last night I became an Auntie (by Spirit, much stronger than Blood, in my book of Tammy Holies), and my kids have a younger cousin! (Oh my Gosh, after the newness wears off, I'm gonna have two jealous kids on my hands!)

Sophia Elif Yenginer, 8.2 lbs and 22 inches, a true beauty! I'm so happy for Chantee and all the fam, and I sooooo wish I could be there for her, like she was for me all ?? 2 times (wow! It seems like I delivered Benny three times - it took so long!)

How many of you are my Facebook Friends(aka my FF's)? - raise your hand. I have magical powers and I see you through your screen. I'm watchin' you! LOL as I type this, I wonder if old age (33, but feel in my 70's more frequently nowadays), divorce, single-parenting, work, unemployment, and very recently receiving full initiation into the Parents of Kiddos with Special Needs Club, has somehow jaded me? Hmmmm, yes, definitely.

I Came Out on Facebook about being "un-married" on Sunday, December 6th, 2010, six months after the split, 2.5 months after the big D. Every couple months, I'm reminded that not all of my FF's read my Proclamation to the World.

So, here's the Real Deal: This blog ain't gonna be about that. That is history that does not deserve reliving, and the why's really do not matter. I flunked almost every history class I ever took, so if you want history, don't look here. And, as most of my friend's know, drama does nada for me.

I, Tammy Ann, have ALOT to say about the Present!

From this post forth, this is MY blog about being the best MomOnWheelZ I can be, my thoughts, feelings, a place for me to brag, vent, and bring my friends (and future friends) along with Benny, Destiny, Tank, Buck and I on this incredible adventure most call "life".

What is a Buck, you ask? Bait to keep you coming back for more!

Some of it will be a nice, blissful go-to-bed-feeling-happy and refreshed read - you know, the type that gives you sudden brief giggles for the next hour or so. Some posts will leave you bleeding along with us, especially as we get to know Dravet, and make room for the Wicked Monster in our little family. And some posts will make your shrink a very rich person.

Are you excited? Hang On Tight - This is a Scrambler with no emergency Shut-Off Switch!

This is my family.

This is my family all naturallll.

Hold your questions please!

Dear Wheelchair Maker

2009-10-25T10:32:00.006-06:00

I recently finished the most comprehensive wheelchair evaluation imaginable through Assistive Technology Partners in Denver. After four two-hour visits (it usually takes one or two visits, but what can I say? I'm complicated!) my H3 is finally being ordered. Yaaaaay! The pessimist about these things that I am, I think it'll be the most costly birthday (end of March) present I've ever received! - Or want to receive, for that matter!

A friend of mine posted this video on Facebook today, and I do believe, I done missed my mark with my eval! ;-)

Rehab-ing!

2009-08-30T08:03:00.004-06:00

Yes, I am alive and doing very well, if I do say so myself! This may come as a shock to those of you not on Facebook. I believe my last mass e-mail was written from ICU after I tore my MCL and stopped breathing, etc. LOL, life is great, ain’t it? – You never know what loop-dee-doo is going to sneak up on you.

When I think about my 2009, I visualize my favorite Six Flags Magic Mountain ride of all time:

VIPER!

Watch this video and hold on to your cookies!

From the website:

“Starting with the world's tallest vertical loop at 14 stories, and two other loops at 9 stories and 6 stories. Add to that a 4-story corkscrew and a double-barrel boomerang turn.”

The highest point is 19 stories, and Viper is 3,830 feet long and speeds up to 70 mph. Imagine creeping through these amazing flips, turns and drops at a mere .25 mph and there you have my life this year! Every time I get head-up, there seems to be a surprise corkscrew around the corner.

I have to say that the MCL corkscrew was the best thing that could have happened to me at the time. Now, wait, before you start thinking I’ve lost my mind, you must know that we have been seeking competent physical therapy for me since Benny was born. We have tried more than half a dozen PT’s, some of which admitted they were clueless; others were clueless but chose to waste our time and money. Before my ligament snapped, my quad was so contracted that both hip flexor and hamstring/knee were stuck at 90 degrees - the pain constant. I spent six days in the hospital, and another seven days at an acute rehab hospital. Northern Colorado Rehabilitation Hospital is changing my life in ways I never thought possible. All I can say is WOW! We never would have discovered them if not for my recent injury. I go three days a week for 2 hours, and my progress is stunnning!

Funny…I’m doing so much better after this last loop-dee-doo! Nearly pain-free, and regaining voluntary movement/mobility. I'm standing with Lefty down, kneeling, beginning to crawl, etc.

This post is intended to catch my non-Facebooking friends up with my ever-extended recovery. I have more news, and of course, kid updates coming to you real soon!

Cute and Sporty Kiddos

2009-07-18T16:32:00.014-06:00

Benny was born a Kicker. Those of you that were close to me durinng my pregnancy with him may recall him practicing Goalie Kicks on my right ribcage for months. It's true, it was insane and painful, but it became a beloved pain of security - On the rare days he needed to rest, you could find me at the birthing center, hooked up to the monitor, listening to his heartbeat, watching his heart and movements on the strips the machine spit out. As I think about it, Benny and Desty's temperments were evident from the get-go. Desty enjoyed tender moments, teasing me with spurts of soft baby movements. I swear she was in there rolling, floating to the sounds of bubblies and her garbles, intentionally tickling me with her long toes! At first, I was quite disconforted by her reserved approach of contacting me. In the beginning, in fact, I feared something was wrong with Desty. After some reassurance though, I enjoyed our tender moments together, and I came to really appreciate the lack of abuse she expelled in me. Part of it might be that I was so tired and distracted from keeping up with "the time bomb" (as his daddy lovingly called infant/tot Benny), Desty knew that the best tactic was Hard To Get!

Mommy-Tangent! Oh well, that's what this blog is all about, right?! :-)

Benny's been wanting to play soccer for a long time. I was determined to get him into some kind of soccer program this summer. Unfortunately, I fell short after attempting to fill out a YMCA Soccer Camp application. It required the same verifications as does our Section 8 (housing subsidy) recert. Lacking the time and energy to go through all that, and still pay too much for four mornings of a 45-minute 'Soccer Camp', I threw in the towel.

It was my Assistant's idea and resources that got me back in the ring, but more importantly, Benny into cleats. She comes with a posse of athletes, and one of her friends' agreed to give Benny some soccer lessons. This clip is from Benny's 2nd lesson...check out his perfected Goalie Kick!

Here is a little Benny Soccer album, dedicated to his Mee-Maw, and her soccer-clan, and also to the Cutler's who recently took us to a competitive game ;-)

Now the great soccer news! Desperate to get Benny in a program in the fall, I decided to take a stab at Boulder's NOVA, a soccer club that I've heard has great Junior program. The financial application was one page - no $ info, just questions like, "why do you want your child to play soccer?", and "which of these programs are you on?..."! I hand-delivered it on Friday, and within minutes, rolled away with a full scholarship for Benny - probably for as long as he shall live! Soccer Mom SCORE!!! Honestly, in a time when everything seems like a battle - it lifts my spirits when something is so easy.

Thank you NOVA SOCER CLUB! Benny will be placed on a kindergarten team in two weeks, then play on his own school field in the fall.

And finally, on Wednesday, Benny was allowed to participate in Slide-Time with Desty's swimming class. Watch Big Brother in Action!

Funny, he's so protective of his kid-sister at activities like this, but at home, she needs protection from him!

Our Little Swimmers!

2009-07-11T22:41:00.017-06:00

The one constant activity in our lives is Infant Aquatics Survival Swimming Classes. Benny began swimming in June 2007 at nearly age 3; Desty began swimming in September of the same year, and she was a very teeny near 2-year-old.

Both kiddos LOVE swimming, the confidence and freedom that comes with knowing how to be safe while having a blast in the water! Mom and Dad love the comfort of knowing we have done everything we can to make them comfortable, safe and confident in water. The bottom line is that Benny and Desty have a much better chance of surviving the typical water accident than if they were dependent on floaties, an adult or the like. If these kids fell in, they'd automatically roll over, and look for an edge. No swim suit necessary - they've floated in their snow coats and boots!

No, I'm not overly confident - adult supervision is ALWAYS a must, but in an accident, time is the worst enemy. Give kids as many tools as possible to prevent a slip into a pool, a pond, whatever, from turning into an terrible accident. No guarantee...but a sure better chance. Isn't it like teaching a teen to drive safely, or preparing a pre-teen/teen about the pressuures/dangers of sex? Only, the joy and dangers of water come long before driving and hormones! ;)

Now watch our fishies go!

Of course Benny can doggy-paddle and he just moved into Stroke class, but they can both Swim, Float, Swim, which is key to survival. Here in these clips, the kids are focused on swimming, but they can relax and float for a loooooooong time.

Kids Say the Darndest Things!

2009-07-04T18:21:00.007-06:00

Dustin and I began writing down and collecting Benny and Desty quotes several months ago. Dustin has posted them on Facebook, but I want to post 'em here too, for everyone's ennjoyment. This is just a short sample from our collection.

HAPPY 4th to you!!

Benny said "Mommy I think I know how your hip got hurt. When you drink Dr.Pepper, it goes down your throat - all the way down - and stays in your hips and that's how your hip got hurt."

"Cheesecake! Cheesecake makes my tummy laugh!" - Destiny

Destiny: Talking tummies are Tummy Dums
Benny: You said a bad word - Tummy DUM!

"Some tummies talk and some don't. I call talking tummies 'Tummy Dums' and I have a Tummy Dum. Part of the name is a half bad word - Tummy DUM" - Destiny

Benny: "Hey, Mom, you know what? WE DRINK MILK FROM COW PEEEEEEEE!"

Destiny: My Leg Hurts
Mommy: Like Mommy?
Destiny: Uh huh
Mommy: Did you have a surgery?
Destiny: Not yet.

Benny: "Hey, Mom, you know what? WE DRINK MILK FROM COW PEEEEEEEE!"

On St. Patricks Day
Benny: Pick out Green!
Destiny: No - Because Mommy Loves Me the way I am (she wanted to wear pink)

Benny: I don't want chicken strips.
Daddy: But these are chicken fingers.
Benny: Chicken Fingers! (runs to kitchen table to eat)

Daddy to Benny: It's not a roll - it's Garlic Bread
Destiny Interjects: There's a spider named Garlic Bread (Charlotte's Web)

"Mom, I want to be a baby again in your tummy and when I come out - I want a Pink Luvy!" - Destiny (Benny gave her a yellow luvy doll at the hospital when she was born)

Mommy: Destiny, do you have a brain?
Destiny: Yes, it's right here. (points to leg)
Mommy: Mine's in my head.
Destiny: Ha! Mine's inside my cheek!

"Daddy, this elephant needs to go potty" - Destiny

"I'm a people-changing dog. Did you know that? In just a minute, I'm gonna turn back into a bad dog." - Benny

"Mom! The dog's gonna scratch your hip!" - Destiny when Benny was playing like a dog

"I Love you Higher than Pluto. Higher!"
- Benny, who was studying space and planets at Sunflower Preschool

"I found this in your room - so it's mine!" - Destiny

"Chomp starts with Chomper." - Destiny
(Chomper is a young T-Rex on The Land Before Time cartoon series)

"I wish you had a Better Brain, Mom! You just Forget. Forget. Forget. Forget." - Benny

Mommy: I love you Darling!
Destiny: I'm not a Doggie, Silly!
Mommy: I love you Darling!
Destiny: I'm not a Dolly, I'm Desty, the Daughter!

Benny: Do you remember when we went to the Cemetary?
Daddy: Arlington Cemetary?
Benny: Yeah. When can we go back and see the Dead People?

Daddy: Be Careful not to step on Mom!
Destiny: I didn't - I stepped on Myself!

Each day, Destiny likes to tell us about the dreams she had the previous night, here is one instance:
"The Soldiers attacked my leg and that's how my leg got hurt Like Mom."
"I was in my Dream, and you weren't - you stayed Home."

"I'm never going to school again, Until I Die!" - Benny

"Huh?" - Destiny

"What?" - Destiny

"Get That Cat Out!" - Destiny, so angry she shakes

"There was a Poopy in the Potty and I tried to Pee it Down." - Benny

Daddy: How did your room get this messy Destiny?
Destiny: A Monster did it!

Daddy: You need to keep that icepack on there for a while so the bump & swelling will stay down.
Destiny: I want it to stay up!

A Note From Benny

2009-06-13T20:39:00.003-06:00

Our almost 5 yr old loves to write while eating meals. This is what he came up with this evening - we didn't realize what the note said until after Benny had gone to bed.
(note: we did not help him at all with the first word, but he had trouble spelling Destiny's name correctly).

An Intimate Moment with Tammy's Newest Hip

2009-06-10T16:12:00.005-06:00

This is what I'm recovering from...

This is only half of it. What you can't see is my hip and buttock covered in black and blue bruise.

Another Cool Video That Speaks For Itself

2009-06-07T19:10:00.001-06:00

Cool Video

2009-06-06T21:50:00.003-06:00

Hi everyone! I'm home and doing pretty well. I have a lot of pain but I'm doing much better than last time. I thank God everyday I only have two hips. Sometimes I need a bit of reminding why I did this to myself again. Remind me how kick ass my right leg is, any chance you get. LOL. The word "ass" is at the tip of my tongue lately, I wonder why! Maybe because mine is HUGE!

So, I've got a video for you all to watch. The funny thing about it is, the first time I watched it, I didn't even recognize myself! Now you can play "Where's Tammy?". Also, take note of the cool posters toward the beginning of the video. Dustin was the illustrator!

Fighting For The Community Choice Act from Alejandra Ospina on Vimeo.

Friday Morning

2009-06-05T06:43:00.002-06:00

Tammy is doing much better! Eating again, Color back in her face, Getting plenty of rest, Keeping medicine down. She has been out of bed several times now because Mr. Foley (She is a big Three's Company fan, in case you didn't know) is gone and she refuses to use a bedpan. We are now living A'la Commode. We brought our own commode/shower chair which we purchased from a friend after the last surgery and it works very well. It has wheels, back support and arm rests.

It amazes me how amazed hospital staff is about the things we have come up with to work for us. When seeing Tammy's shower chair they said "I love these brakes" "Oh, look it even has a velcro seatbelt." and "this is better than most of the equipment we have" - They were equally amazed with the custom built platform which a friend made for Tammy after last surgery. The social worker was even amazed that I thought to use the empty plastic notice holders on the doors to put Pictures of and artwork by Benny and Destiny. " I never thought of that - I'm going to recommend it to all our families!" I don't know if it's just the mandane work environment that extinguishes any flame of creativity around here or what - I just don't get it. In March, when Physical Therapy tried to transfer Tammy for the first time they brought 5 people and a transfer board - I thought they knew what they were doing but it was such a joke, causing pain to Tammy, going extremely slow, and just not working. I remember I said "I just don't see how this is going to work when Tammy has to hurry and get to the commode". This time, some of the same Physisical Therapy Assistants were back, they let me show them what we had figured out works best and things went much better.

In March, we really felt pushed out of the hospital before we felt comfortable going home. This time things are different. Perhaps having a surgery during the week makes a difference. Last time the surgery was on a Friday and after that Friday we did not see our Surgeon until the 6 week post-op visit but this time he has stopped by himself twice, besides the visits from his surgical team. Our Surgeon also contacted the Rehab unit to make sure they met with us and understood what we were comfortable with this time (Tammy gave feedback about the discharge last time :-) I told the rehab unit how we were pushed out last time and really had to just figure things out after we got home, how Tammy felt horrible that first week at home and has done everything possible to make this time easier. Tammy has spent weeks arranging her in-home care following surgery, we have moved into an accessible home, and we have a new accessible van. We have our platform and our shower/commode chair. So, I have been telling all the hospital staff that we planned on a 3-4 day stay just like last time (and we were planning on being forced out like last time - transferring to the rehab wing was not offered to us last time) and unless Tammy is still needing Oxygen and IV, there is no reason for us to stay.

Things are so different this time around - in a good way. We are anticpating that we will be discharged this afternoon. Even though we now have a wheelchair accessible van, Tammy may get medical transport because she doesn't know if she wants to try sitting in her chair all the way home (especially since our route home is on 270 - one of the most awfully bumpy portions of Hwy in the Denver Metro area - I hope part of the stimulus package funds for rebuilding roads will do something for that stretch- it should because President Obama loves Colorado :-)

When they decide to discharge us - it will happen fast and I won't have time to write another post but I will try to write a comment on this post - so please check back later in the day to find out what happened.

At UCH, whenever a baby is born, they play "rock a bye baby" over the entire PA system - we heard the lullaby twice this morning fairly close together so I'm thinking someone might have had twins. As I write this, the lullably just started again - triplets? Maybe they are not all from the same mother.

Thursday Morning

2009-06-04T07:57:00.004-06:00

Tammy will be getting a blood transfusion this morning. Her blood levels are very low, she is pale and feeling rather weak and tired. Low blood levels are normal following surgery but with her symptoms, getting extra blood is supposed to help considerably. Tammy feels she can use any extra help avaliable and has chosen to get the blood transfusion.

Tammy slept much better last night but has not eaten much of anything. I am not terribly worried because as I recall and as you may recall, her last post-op hospital stay in March followed a similar cycle of eating well then not and then having a pretty tumultuous day before being discharged the next day. If the cycle continues we will be discharged tomorrow but I have not heard anything about discharge at this point. Much still has to happen before we can be discharged. Today should be a big day so we'll see how things go.

Since last evening, Tammy has been sleeping most of the time but overall Tammy has been much more "with it" and alert than last surgery. This surgery she has chosen to avoid taking Oxycodone and is instead taking Dilaudid. Pre-surgery she found Dilaudid worked better for her and the one time she ran out of Dilaudid and tried Oxy, it really upset her stomach.

Last night at 3AM, I was presented a scapel by our nurse and allowed to cut up Tammy's pink pillow wedge that goes between her knees/legs. These wedges come in a one size doesn't fit all form. Since Tammy is so short the pink wedge was way too wide and long and she needed it trimmed down. I tried getting a good knife from our day nurse yesterday (you will remember her from the last post, we will continue to call her Sam) and she offered me a plastic butter knife or some fisher price children's scissors. I told her neither of those would work and I tried again with our night time nurse and she got me a scalpel and thats how I ended up carving Tammy's pillow at 3AM. I really liked our night time nurse and for me having a good night time nurse is more important than during the day because frankly at night I am just too tired to deal with this but during the day I am prepared to fight. Those scalpels are really nice and sharp btw; it worked much better easier than hacking at the thing with our kitchen knife like I did in March.

At 5:30AM Tammy noticed her new waterfall. Tammy really likes waterfalls. The waterfall I am referring to is the humidifier water thing attached to her oxygen which I mentioned in a comment on the last post. Tammy woke up and said "what's that water running?"

While writing this post, I have been able to get Tammy to eat some applesauce and gelatin. It would also be nice if our not so friendly friend called Nausea would say goodbye today. Hopefully Tammy will be able to eat without that not so friendly friend causing any trouble. Some big things we are anticipating today include: the blood transfusion, saying goodbye Catheter and hello Commode, and transferring. Benny, Destiny and several friends are expected to stop by today.

Throwing Up and other Adventures of a Hospital Stay

2009-06-03T14:05:00.006-06:00

Staying overnight in a hospital is not as exciting as "Night at the Museum", neither is it as peaceful as staying at a country bed and breakfast. Hospital stays are full of craziness and a warped sense of time passage - I've learned you always have to try to be alert and ready for anything! When we entered the world of UCH early yesterday morning I found my self repeating an "I don't want to be here. I don't want to be here" mantra. Quickly though I have accepted that we are here - an acceptance that was made easier by having a general idea of what to expect and knowing that this will be a short hospital stay. This is quite a bit better than a hospital stay where you never know when you will leave the twilight zone aka Benny's Birth at University of Utah Hospital July-August 2004 (a 2 week hospital stay).

Tammy had a rough first night as the lovely nerve block began wearing off. Today she has been working to get pain under control. Tammy has been eating well today (breakfast and lunch) and has been able to take some oral medications without throwing up!(I'm so glad because although I enjoy a friendly game of Dodgeball, I do not enjoy dodging projectile vomitting like I had to do 3 times yesterday). After lunch Tammy was able to sit up on the side of the bed for the first time with the assistance of myself and one physical therapist. Remembering our last experience of sitting up for the first time, I immediatley got the vomit basin ready but was thrilled not to need it.

Dang it! Our vomitless day has just been blemished! As I was writing this blog at 2:30 PM, Tammy threw up but luckily I was sitting next to her bed with a basin at the ready under my chair and I'm happy to report that I was able to catch it all like a baseball in a mitt or maybe more like something on that old Nickelodean show with the green slime?

Tammy says her day nurse hates us today. I think Tammy thinks this mostly because of an incident this morning when the PCA medicine machine started beeping because it was low. (if you have ever stayed in a hospital - you know how annoying these machines can be and how long it can take for nursing staff to take care of them) I let the CNA know who was in the hall, he said he would tell the nurse, I came back in the room and pushed the silence button and waited and then it started beeping again. As I was pushing the silence button the second time when the nurse walked in and said aomething like "no, oh no that's a bad idea" and I pushed the button anyway. We got in a little discussion because she said things like "If you turn it off - I won't know" and "we can't have you messing with the drug machine". I said things like "I already told your assistant about it", "it's only a silence button, I'm not going to mess with anything", "I live here and I'm going to press the button because I don't know how long it will take someone to come in" and "the beeping noises make Tammy spasm". Anyway I don't really think the nurse hates us because she smiled and it didn't seem like a mean smile to me. Tammy says I had more than just one heated discussion with her nurse today, but this is the only one I remember - I guess one was about getting the right amount of meds. I think it's just the nurse's personality you know, every nurse like every person is different and nurses are people too. Tammy says her nurse today reminds her of Sam on ER; Sam is the one who has a son named Alex and dated John Stamos and on the ER series finale she got a nice red car for her birthday. So, if you know this character from ER, you will have a pretty good idea of who our nurse is today.

I will write of our further adventures at the hospital in another post.....

Alive and Doing Well After Surgery

2009-06-02T16:43:00.003-06:00

Tammy was only in the recovery room for 2 hrs - much better than the about 6 hrs wait we had last time. In the recovery room, Tammy was much much more alert than last time.

Nausea has paid a visit again and we hope the visit is a brief one this time. (we are going to hold off on oral medications today because it just aint been working out).

Tammy is pissed about one thing - The nurse in the recovery room failed to properly set up her PCA Machine and when she arrived in her new room (811) she was in severe pain. I asked the nurse twice if it was hooked up and she said it was - Luckily we have a more observant and attentive nurse tonight.

Tammy is doing well and in relatively good spirits! (especially now that her pain medicine machine is hooked up properly) Tammy says "This Block is Great! Can I have another tomorrow? LOL"

Heading To Surgery 6/2/09 6:04AM

2009-06-02T06:01:00.000-06:00

In less than three hours, I will be on the operating table, getting my left titanium hip. Unlike when I was approaching my first hip replacement 2 ½ months ago, my biggest fear is that I’m not scared enough. This time, I’m hopeful. My right hip/leg is absolutely AMAZING! I did not imagine such a magnificent outcome going into this. My leg (wow, it is MY leg!) feels cured! – Typically I despise the ‘cured’ word, but I don’t know how else to describe it. I can kick some major ass with it!  All I can do now is h.o.p.e my left leg follows suit!

I love you all, and just in case I am overly confident this time, I remain confident that because of all of you, my family will be in good hands…

On that note! We’re off!

Expect regular updates from Dustin!

Major Life Changes - Tammy's Story

2009-02-12T09:09:00.004-07:00

Hello everyone! Most of you that are on facebook know why I have not blogged in a long time. Some of you however, may not know. I suggest that you sit down if you are not already sitting. To make a very long dreary story short, on March 13th I will be the proud (right?) owner of a new 2009 titanium hip. Unfortunately it only comes in one color and to get it i will have a 6 to 8 inch slice along my leg. But don't worry, the doc says I'll be walking again in no time!!! LOLOLOL

Quick side story...I have a favorite pharmacist that we've known for two and a half years. He's a great guy, he really knows his patients very well and cares tremendously. Well, yesterday Dustin went to get some new prescription filled for me and the guy asked Dustin "So will she be able to walk after the surgery?" OK, when I heard this I thought is this really the guy that is making my drugs for me?? LOL! No he really is a nice guy though, but I will be double checking the pills against pictures of the correct pills on the internet from now on.

So when did this all begin? I have known this or something like it would happen because of the way that I sit and crawl. When I was younger, Physical Therapists would say "You know, if you sit like that, you're going to have major hip problems when you're older". I was 5-9 years old when I was hearing this - who cares?! Sitting in "W-Sit" and "Knee Walking" was how I could function the most. I figured I'd be 60+ when my hip went out. A couple of years ago, I began having a difficult time - post kids - with my hip. It wasn't anything too severe, just a little bit achy. I noticed it especially when I tried to crawl stairs at friend's houses. It gradually worsened and this past Summer, I stopped being able to do the machines at the gym. December, it was straight down hill. The pain is really astonishing.

Last April I tried to get my Boulder PCP to help me, it was the first time I ever really sought help for pain. Basically I was disregarded after no major findings were determined by a basic X-ray. What I needed was an MRI, but the doc was not concerned and did not order one. So this past September I went to a different doc in Boulder - same practice - and it took three and a half months to get the MRI that I needed. In the mean time I would crawl and my hip would give out and I'd fall over in agony. My doctor's office could not seem to get the MRI results. In fact, I went to her one visit for the sole purpose of getting the results. And she made up excuse after excuse as to why she could not get it.

On January 8th I fell over and could not move my leg for quite some time. The pain was just unbelievable. I thought I broke my hip. Dustin once again called the doc and left an angry message on her machine to get back to us. The next day he decided to just call the MRI department and find out why we couldn't get the results. It turned out all we had to do was ask for them, which my doctor never did. The results were faxed directly to us within 20 minutes of the call. Words like "tear" "displaysia" "detachment" "cysts" and "osteoarthrosis" seemed to fill up the entire page. Now picture it...we were here in our living room reading all this stuff. We had no idea what a lot of it means. Dustin called my doctor and left a very brash message saying that we indeed got the results on our own and the least she could do is go over them with us. Its been one month since that day and we have not heard a word from them. That afternoon Dustin and I had decided we needed to find a higher power. We managed to get a sick visit at a clinic through the University of Colorado in Denver. During that appointment we heard the words Hip Replacement for the first time.

We are bitter because if I would have received proper care from the Boulder health system I would already have a new hip and the pain would have never had gotten this severe. If there is one good thing to come out of this whole disaster its that we have finally found quality health care for both myself and the children. Unfortunately its all in Denver. I have a great doctor now! I have a great orthopedic surgeon now! And I feel better about my longevity! The kids are now in the Children's Hospital system after some major blunders by Boulder's ER. They have a wonderful pediatrician now.

When I go to these new doctors and compare them to what we have been dealing with for the past two and a half years it actually scares me! People like me and my family who are on Medicaid can get such poor treatment from the broken system. Many people on Medicaid would not have the choice to go to Denver for medical care. We are fortunate to have the resources necessary to travel. Even sadder is the fact that in the past three weeks we have come to find so many parents that are in the same boat that take their kids 25 minutes away to the Children's Urgent Care North Campus rather than 5 minutes to the Boulder Hospital ER. I should mention here that Destiny had a couple seizures two weeks ago and Boulder ER overdosed her and misinformed us. Luckily, Dustin initiated taking Destiny to Children's 6 days later and she is now recovered.

I have not crawled since January 9th and I will never crawl again. This is probably the biggest life-style change I have ever gone through even more so than becoming a mother. For those of you that know me in my home-life you understand...my entire world has been on the ground, all my life. Its depressing. The first week after learning that my only option is definitely total hip replacement was really tough on me and on Dustin. It didn't help that I was taking Valium as a muscle relaxant, but it is actually a depressant. Since then I have been reaching out. I found a very supportive "Hippy Support Group" and have been communicating with a lot of various people. One of the most difficult things for me in the beginning was that I thought that only older people (70+ - no offense!) had hip replacements. Well I found many many many young people that I can relate to that have gone through THR! This has been an awesome boost for me. I mean OK, I'm sorry that they're also having this happen to them, but its nice to know about it.

Soooooooooooooo we have a lot of work to do. Not only to prepare for major surgery and home rehab, but we need a new house! Right now my attendants and Dustin are pushing me around my house in my manual chair. Just another strike against my independence. Its hard on them and me. We moved our bedroom from the garage to the guest room. We have a king + sized tempurpedic adjustable bed that takes up most of our bedroom. It is a cute little bedroom. I lay in bed and I see a huge a tree out my window, but it is really small. I want my independence, whatever that will mean living my home life in a chair. It will all come it's just going to take some time. But patients is not one of my virtues. We are looking for a place that can house live-in attendants too. So that's exciting!

Many of you know that I type sitting on the floor. Well, that's over. Right now I can't type. However, in a couple weeks I will be getting an AT (Assistive Technology) evaluation and I will be geared up with some high tech equipment that will enable me to once again use the computer independently. Several people have suggested Naturally Speaking. Let the record show that Naturally Speaking doesn't speak CP!!! Check out www.eyegaze.com this is the more probable rout I will be taking.

I am leaving my pictures and graphics out of this email because right now I don't feel like teaching my wonderful typist how to insert those things. But I promise my next blog will be focused on the kids and their activities and it will be filled with pictures! Look for it next week ; )

This is where I will close...I miss you all!!! I'm sending my love your way and please send best wishes our way.

Oh and by the way, Boulder Colorado still rocks! We love this place! We only hate the medical care - that's all. Oh good news flash! Benny was accepted into the only Charter School in Boulder. Its a kids motivated school, K - 8. We are very excited about this!

Love you all,
Tammy

Graduation: Bringing People Together - The Tribute

2008-12-20T13:44:00.027-07:00

This past week has been one of the greatest in my life. Approaching commencement, I grew increasingly nervous about being the center of attention. I am a person who loves recognition for the accomplishments I produce - period. For the past four years, most major events have centered around the kiddos. I continually pull the masses together to celebrate them.

I have obviously graduated from various scholastic accomplishments before - though the entire concept was an obscure symbol which meant little to nothing to me. I guess I just don't get the ritualistic phenomenon. I swear I was not born a hippy - it just came naturally with age.

After reading this, perhaps my irreverant graduation announcement is begginning to make a little more sense. For the record:

*I am not a Catholic Sister (by any means!)

*I am not Catholic (by any means!)

*I am not Pregnant (that's a PROMISE!)

I attended Regis, a Jesuit Catholic University, because the College for Professional Studies appealed to me. I would not have suffered through traditional college as a mom - I just would have never done it if I had to attend classes everyday and sit with a bunch of little rich kids concerned about their nights being wild enough. Gosh, I feel ancient! So CPS gave me a fast-track, and allowed me to be home with my family, only attending class 1-2 evenings a week. Granted, each course required 20-35 hours of homework per week, but at least I was home.

Alas! I DID IT!!!!!!!!!!!!!!! And, as funny as it is to say...I'm proud of myself!

I decided to do the whole "walking" ;-) thing because this is IT! I worked incredibly hard to accomplish this degree, and I have absolutely no desire to continue my education formally.

Still, I struggled with the ritualistic aspect of commencement, clear up to two days prior to the ceremony. My dear friend, Lori, occasionally much wiser than I ;-*, laid it out like this: The ceremony is just that, a ritual. The wonderful thing about ritual is that it brings people who love you together. I thought about this, and yes, indeed some of my dearest and truest friends were traveling, not to watch me take the diploma cover from Father President (and drop the damn thing!), but to share in my pride, and show their love for me.

IT WAS WONDERFUL!!!!!!!!!!! SOOOOOO WONDERFUL TO HAVE SO MANY OF MY FAVORITE PEOPLE TOGETHER AT ONCE - at the same dinner table even!

Meet Lowell and Julie

Lowell points out my name on the graduation program!
These two youngsters have been in my life longer than anyone at my festivities! Lowell was my independent living instructor when I transitioned from nursing home to independence in January 1998. His grooviness kept me outta a lotta trouble, and he and his vibrant wife, Julie, kinda took me under their wing until I fled for Big Sky Montana. As I left, Lowell said, "You'll be back. I bet'cha within ten years!" A wise hippy he is! Seven years! - Frew, glad I fullfilled his prediction! I came back as a team of five (Sophie included), and Julie and Lowell are a part of our daily lives! My favorite thing about them is they have a crazy ability to love without passing judgement!

Meet Dustin and Tammy

Met in 1999, married in 2003, and still best friends today :-) Need I say more?!

Meet Lori

Ms. Lori is one of my bestest friends. We met in 2001 while serving as Americorps*VISTAs at the Disabled Rights Action Committee. Probably unlikely friends, I am a strict soldier; Lori's a very resistent soldier, A.K.A. Rebel! LOL! At one point, I was even her supervisor...we have been through a lot together! Our relationship blossomed post DRACian-era, as I began to settle as wife and mommy. I can't imagine my life without this Buffy-lover (yuck!) now! I love Slayermouse to death, and Lori is part of our family. Technically she lives in Salt Lake, but she does have her own room in our home!

Meet Chantee

It was love at first bath! We met in 2002, she was a CNA for a Home Health company, and I stole her away. Chan was my lesbian lover (LOLOL inside joke!), best friend, roomy, assistant, maid of honor, birthing assistant, and my accomplice (according to her ever-so-worried Mother!). Some of my fondest memories include Chantee, as well as some of my most disgusting memories (I'm soooooo sorry I looked like a dying green whale at your wedding!) I dumped Chan for Dustin, and she then dumped me and Dustin for a guy name "Pugsley" Pugh ;-).
Bottom Line: I love this Chica, and if Dustin and I croak, she is the Baby Mama of our children.
It has been very hard, at least on me, being so far away from her. One of the three highlights of my grad weekend was we got alone time! We are still lesbian lovers!

Meet Grandpa Cutler

What do you say about a dude like Grandpa Cutler?! I met him in 2002 - he was the Bishop of an LDS ward for Single Young Adults. His unconditional love for me and my family makes him Grandpa Cutler. He, his wife, and his family adopted me and each new member of my family. I love being around him, and wish we could be around him more - he just makes us feel good! It's funny, you might think he's some kind of strict old judgemental fogie because he is a Bishop, but we know otherwise. He's pretty darn hip, and we love him.

Meet Grandma Cutler Not the best picture of her (again!), Grandma Cutler is a one of a kind lady that everyone just wants to know! We love her so much, and she is a hoot. She can be so silly, and has made me almost wet my pants many times! I guess because you don't neccessarily expect her to mistake baby poo for spilt chocolate and eat it, etc, etc. I'm laughing so hard right now as I type this! I'm sorry!! LOLOL!
The Cutlers were another highlight of my weekend...They were flying in from Vegas the morning of my graduation, got snowed in at SLC airport, and after several hours waiting, flew into Denver. They missed me getting my empty diploma cover, but they were there to give me huge hugs when it was all over! They came for me - that's all I cared about! The following night, when getting together didn't work out, Benny was devastated...That touched my heart. :-( But we will see them soon!

And last but certainly not least...
Meet Kim A.K.A. "Mee-maw"Though it definitely felt like I knew this lady since I met Chan, I honestly don't remember really meeting Kim until June, 2003, at our open house (wedding), held in her backyard, which she threw! I kid you not! Chan convinced her mom to throw the event for us because we moved our wedding up a month, and lost our original venue. This is hilarious because I was under the impression that Kim thought I was the Crip Devil - enticing her daughter to be crazy, leave home (to our apartment!) and travel! When I got knocked up, Kim and I fell in love (huuuge love triangle! ;-) and Kim transformed into Mee-Maw, adopting our family. Mee-Maw is the grandma my kids know most intimately - meaning it's much more real to them than not. Mee-Maw tended both kids regularly, but especially Benny, as a grandmother. She loves to spoil them, and hates to return them (usually!). "Mee-Maw lives over the mountain," and our lives seem to revolve around the kids visiting Mee-Maw. Mee-Maw this, Mee-Maw that.......WE LOVE THAT MEE-MAW! And she loves us enough to get on the dang plane, fly over those big mountains just to see us! Someday she might even forgive me for leaving "the Great Valley"! ;-)We sure miss her!!!

I had a bowling party; it was freeeeeeeeeeezing, the roads were icey and it was just a miserable day to leave the house. Notwithstanding, all of us that were able to make it to the party, had a blast! My children are natural bowlers; we are definitely destined to be a bowling family! Destiny bowled a 92 and an 104, with Benny not too far behind! Benny started our rolling the ball, then he advanced to throwing it like everyone else.

I must say, the thing that truly made the bowling party for me was the arrival of two of my closest friends, Robin and Laura. I was so sure that they wouldn't be able to come because of the awful ice. BUT THEY CAME!!!!!! and it meant sooooooooooooooooooooo soooooooooooooooo much to me!!!!!!!!!!!! Unfortunately, I have no pic to post LOL!

So many friends sent their blessings to me, and I do declare to have the greatest friends on earth!

Here is a complete album from the weekend...

Graduation Weekend

On the Court

2008-12-07T12:22:00.020-07:00

After a long silence, The Life and Times of a Mom On WheelZ is ressurected! I have much to say in the coming weeks, but today, I wish to pay tribute the GREATEST SPORT OF ALL TIME - the one, the only

POWER SOCCER!
We are the

Some of us have been kickin' balls since September; others joined the team more recently. We all love the sport and are commited to the team.

Check out these clips from our latest practice...

(This is my favorite Scrimmage clip because the ball is in play for so long, and every player touched the ball)

(Coach Ashley gives us the station scoop)

Coordinating Power Soccer has been very different than any other organizing I have ever done. The only support we get is some advertising and free gym time through Boulder Parks and Rec. Considering the cost of one hour of gym time averages $80-$120, this is something to be grateful for! The problem is getting consistent gym time. The courts at Boulder's Rec Center are like merchandise on Black Friday. Ideally Power Soccer teams practice on a weekly basis from 2-3 hours per session. A consistent schedule (day and times) is very helpful to the development and ongoing success of any team. We have practiced twice a month since September, but have no dates in January, and two weekdays in February. Weekend practice time in the late morning or afternoon is generally best for power soccer athletes. This accommodates athletes with jobs, long attendant routines and/or extended travel time, and so allows for the greatest potential numbers to participate. I have spent hours and hours and more hours approaching gyms in the Denver Metro area only to get thoroughly frustrated, and discouraged.

LET FACE IT - I am not the stereotypical athlete - even disabled athlete. City adaptive rec directors think I'm crazy - period. I have been blatantly disregarded, and lied to in numerous instances. One person even went out of her way to hide from me - kinda hillariously. It's been reeeaaal fun! ;-) Imagine if I was asking for a free gym! LOLOL I'm not! I can only assume these folks think I lead a very boring life to be making this stuff up!

To rent a school gym, there must be a student on the team, but it's outragiously expensive...

I laugh because going into this, I expected our biggest challenge to be getting and maintaining the equipment. We are verrrrrry lucky to have a volunteer engineer who can do magic in record time - he's unbelievable! I have footguards coming out my ears.

We have terrific coaches and volunteers!

Colorado ROCKETS totally ROCK!

The whole team is working on getting a gym now...WE WILL GET A GYM!

Over 45 teams in the US have made it work. We can too!

Baaaaaaack!

2008-11-06T13:43:00.007-07:00

Hellooooooooo! I am alive! This is my first work of substance since being down for the count, so it should be interesting. My thoughts and feelings are scattered today as I proceed to re-group.

Yesterday I thanked my new nurse practitioner for probably saving my life last Friday. But, today I thank my very funny Robin-friend (LOLOL)for caring enough to force me to think about my health. She nags like crazy...Her nagging forced me to make the doctors appointment. Good thing because one hour before the appointment, my oxygen level dropped. It was scary, and I am one lucky Radical Mom On WheelZ!

I must laugh as I reflect on what a big deal I was at the hospital. We love Boulder, but I do think I will look into Denver for health care. A little confidence from the providers is comforting to the patient...They were either going to pic line me or send me home. LOL I opted for home. Monday I did wonder if I made the right decision, but now I'm sure I did. Every day gets a little easier.

I was devastated to miss Halloween with my kids, I'm still sad, but I am thrilled that they had a blast! Check out the album........

OCTOBER 08

Julie, Bonnie and Lowell took great care of the kids, so that Dustin could stay with me all fifty hours at the hospital.

Luckily, by Friday the kid's antibiotics had them feeling a ton better, and they got a good night's sleep.

Many friends are asking about graduation...I am still rolling at commencement on December 13th, but I'll finish my final class during the first eight weeks of Spring. It sucks for us, but the hospital refused to release me to go to class :-)~ Just kidding! The program that I'm in, because it is a crash program, is very strict and the professor dropped me when I did not show. I'm okay with it - I need a break, and the professor was rude to me anyway.

With Benny back in school, and me stuck on my caboose, Desty is getting loads of motherly attention.....LOLOL POOR GIRL! We had a Princess morning, and I'm ready to get her an agent!

Regarding the election, I will leave it at:

We shall NOT be McFrozen!

Stayin' Alive

2008-10-30T10:10:00.006-06:00

The title says it all...We are sickos, have been for three + weeks. It began with Benny - LOL - everything begins with our boy, doesn't it?! Ugh...His annual seven month hack has returned. But, because of this, a three year mystery has been solved....Benny is not just a really baaaaaaaaaad sleeper! He has aggressive night terrors, coupled by nocturnal "seizure-like"activity. Frew.....When he is sick, his sleep problems are frequent and intensified. The good news is now we know how to help him, and us, to get through it. He will grow out of it.

The hack continues. He coughs so hard he vomits. Put night terrors (where we're not supposed to wake him up) with a violent cough and it spells:

HELL

But that's just the brink of it.

Then mommy breaks out in hives, and is rushed to the ER for a magic shot. Cause unknown.

A few days later, add a fever to Benny's cough.

The following night Desty breaks out in hives and visits the ER. Cause unknown.

The next day, Desty appeared fine. Just before 7p.m. my baby girl collapsed into her daddy's arms and had a seizure for five + minutes, and forty minute recovery. As the medics were prepping to take Desty to the ER, Benny was barfing all over the neighbor. Dustin went in the ambulance; I chased behind in my wheelchair. The ER chalked it up to a febrile seizure and released her. Since then, her fever has been on and off, she now has a bad cough, and now we are all sickos.

Finally, a nurse practitioner listened to us yesterday and now both kids are on antibiotics, and Desty has a referral to a neurologist, because, in her opinion, Desty's seizure lasted too long to be a typical febrile seizure. In my opinion, Benny has needed a neuro for a long time....Think Benny could be passed off as Desty's conjoined twin? no, probably not!

While all of this was happening, we discovered a poisonous plant, Mertle Spurge, all over our yard.

It has been wild at the Burton house! Desty's 3rd birthday celebration has been posponed until we are up to partying. Hopefully, we will be able to enjoy Halloween.

We are going to have the cleanest carpets, as we invested in our own Carpet Shampooer, just in case something is being tracked in.

And last but not least, we are investing in a lifestyle change:

GOODBYE HARSH CHEMICALS, HELLO NATURAL PRODUCTS!

It's not a big deal; i.e. the baby bath and bubbles are heavenly soft, the oatmeal soap is glorious and we looooooove Mari, my dear friend, and Mari's Magic butter salve. We will work on the food when they make a natural Dr. Pepper that tastes like the real thing! ;-)

The Bee Gees come to mind of late.........

The Many Colors of the Colorado Rockets

2008-10-15T12:39:00.009-06:00

INTRODUCING...
...a great opportunity to support a DYNOMITE new team, an inspirational and aspiring artist, and to get a headstart on your Christmas shopping for as little as $20.00! It couldn't be simpler!

PURCHASE Kane's ARTWORK to support POWER SOCCER in COLORADO! Kane, a local artist and Colorado Rockets player, is generously donating 100% of all art sales for the next 30 or so days to the Colorado Rockets. Order an 8 X 10 print or a box of cards from the web (mention POWER SOCCER in Comments during check-out) or order directly from me.

If you purchase directly from me, it will be discounted...

My prices (shipping donated by myself):
A package of ten cards is $30 (on the web $40 + shipping)
8 X 10 print is $20 (on the web $25 + shipping)

If every one of my readers were to buy one 8 X 10, the Rockets would make $2,100!

5...4...3...2...1...

BLAST-OFF!!! GO ROCKETS!!!

We Looooooove Sunflower Preschool

2008-10-09T13:39:00.012-06:00

Where's Benny?!

In the YELLOW and BLACK jacket in front of the trailer!

Today was Benny's first field-trip - EVER! Sunflower Preschool went to Munson's Farm for a fun-filled morning of hay rides, pumpkin picking and a picnic. While we did not volunteer as a driver, we were not gonna miss out. AND though Desty couldn't go on the hay ride, she did get the wildest mommy ride of her life as we followed behind it!

LOL Benny started at Sunflower Preschool in August and I do believe --> 'tiz the PERFECT fit! Benny is having so much fuuuuun and learning and growing, and he loves all his teachers, too. The curriculum never ceases to amaze me! The teachers are great with Benny, and all communicate very well with me, which is definitely key. Benny does struggle - he's quite the 'Big Boss Man' at Sunflower - but the teachers deal with it appropriately and continue to nurture him and seem to really enjoy him. And frequent reports confirm that he's improving in the bossy pants area.

My Facebook update reads: Tammy LOOOOVES Sunflower Preschool and is fighting urges to poo bomb Benny's old nazi preschool.

LOLOL Sorry, I am mad that it seems we get what we pay for in education. Even if Benny actually had a great teacher last year, the difference between a public school environment versus private is disgusting. Vote major school reform! Kids are worth it!

I'm just sooooooo...
RELIEVED
RELIEVED
RELIEVED
to have found Sunflower!

:-) Tonight at dinner, Benny said, "Mom and Dad, remember when we went to the cemetary in Washington DC? When can we go back and see the dead people again?"

SSI 'Marriage Penalty'

2008-10-06T16:37:00.006-06:00

Generally I steer clear of news stories on here, but this is more than a news story. I want all of my friends, family and supporters to know what the government/the system has been doing to people with disabilities. No, the ADA was not the cure-all that many people think. YES! - WE ARE STILL OPPRESSED!!! Until people with disabilities can marry and still earn money to support themselves, while keeping vital Medicaid, the goverment is dissing marriage and the family. The government is, in fact, contributing to poverty in America.

This is not just a news story, this is my reality, our reality. We were discouraged from getting married because of the disincentives you will read about below. We would be much better off financially if we were to divorce -- atleast then we could earn enough to provide for ourselves. I have seen people do this. A spouse becomes disabled, but cannot qualify for assistance because the non-disabled spouse has some kind of income, or they have even a couple thousand in savings. The medical costs are astronomical - and first priority obviously. They have no choice but to divorce! A family breaks...and this couple will probably end up living a lie, or out of fear, completely sever ties. And if they have children...... "Honey, we love each other but mommy and daddy can't live together" just doesn't cut it.

Sorry, I am a bit conservative here.......this is a crime and our system/the government is the villian. The system needs to support SUCCESS, FAMILIES and MARRIAGE, not OPPRESSION, LIES and BROKEN HOMES.

All my life, I've been told this one issue is too big to change, it's not gonna change in my lifetime. (except the brief time I lived in MT!)

Today I thank Montana for taking the issue into their own hands and forging on to conquer the SSI Mariage Penalty!

THANK YOU FOR FIGHTING FOR ALL!!

Readers, please read the brief story and the detailed press release below...

Missoula, MT--- In a packed room, with U.S. Senate Finance Committee staff linked in by phone, Montana People First members and others offered personal testimony about the pain and suffering caused by the SSI "marriage penalty." Following the testimony, they presented over 2500 petition signatures they had collected from citizens all over Montana to a local staff member of Sen. Max Baucus, who chairs the Senate Finance Committee. In addition to the monetary penalty suffered by SSI recipients who marry, those presenting testimony cited additional penalties such as;

* Not being able to openly celebrate their love and commitment to one another in the company of friends and family
* Not being able to inherit one another's estates as a spouse
* Not being able to get information when their partner is in the hospital
* Not being able to make end of life decisions for their partner when necessary
* Not being able to make funeral arrangements for their partner
* Not being able to live openly as husband and wife

Montana People First members hope that their efforts will inspire others around the country to join them in asking their Senators and Representatives to take legal action to remove the marriage penalty from the SSI program. More information is available below in the Media Advisory issued on Thursday by Disability Rights Montana, which is supporting the Montana People First Senate in the campaign to end the SSI marriage penalty.
Rocky Hughes, President of Montana People First, hands Holly Luck, local staff of Sen. Max Baucus, a book containing over 2500 signatures gathered by People First members all over Montana to request removal of the SSI 'Marriage Penalty'.

FOR IMMEDIATE RELEASE: September 26, 2008
Media Advisory
Contact: Raylynn Lauderdale, Disability Rights Montana, (406) 449-2344
E-mail: raylynn@disabilityrightsmt.org

Montana Couples with Disabilities Take on SSI Marriage Penalty

Who: People First of Montana

What: Present personal testimony on the SSI “Marriage Penalty,” and a petition with 2500 signatures to Montana’s Congressional delegation. The testimony and petition ask for Congress to change SSI policies that discriminate against people with disabilities who marry, and that punish them for celebrating marriage and family values.

Where: Jorgenson’s Inn & Suites, 1714 11th Ave, Helena, Montana – large downstairs meeting room

When: 3 p.m., Friday, September 26, 2008

Why: Many people with disabilities live on a $637/month federal SSI benefit, an amount that is about 75% of the poverty level. When two unmarried SSI recipients live in the same household and share expenses, each continues to receive a full $637/month SSI benefit. However, when two people with disabilities of the opposite sex marry, and one or both receive SSI, their combined benefit as a couple ($956/month) is reduced to 75% of the total of their two individual benefits($637/mo + $637/mo = $1274/month)

As a result, SSI recipients with disabilities who wish to marry like their typical peers, in accordance with social convention and/or their faith, hesitate to do so, or choose not to marry at all rather than risk the loss of precious dollars needed for basic food and shelter, as well as for disability related expenses.

Seeking to challenge this policy that treats people who share households differently based on their marital status, People First of Montana enlisted the assistance of several other groups to form a Montana Marriage Penalty Task Force. Members of the Task Force come from Disability Rights Montana, Montana People First, the Montana Advocacy Coalition, the State Independent Living Council, the disability rights organization ADAPT, th e Rural Institute at the University of Montana, and the general citizenry.

Why is there a marriage penalty?

The original reduction in benefits for a married couple, or a couple deemed to be married under Social Security rules, was put into place on the premise that there are “economies of scale” when two or more people live together. This “economies of scale” premise in SSI was patterned on the “economies of scale” present in the TANF program (originally ADC/AFDC) for families. When Congress implemented this “economies of scale” concept for married SSI recipients, they did so with no consideration for the extra costs faced by people with disabilities because of their disabilities.

And since SSI monthly benefit amounts have not kept up with the steadily rising costs of food, shelter and transportation, etc., an SSI dollar buys less and less every year. “Priced Out in 2006,” a national housing study published in 2007, found that the national average rent for a studio/efficiency apartment was less than a full SSI monthly benefit.

A further complication exists for people with disabilities because the definition of "married" under the SSI program is broader than the common definition. The Social Security Administration (SSA) may deem a couple to be “married” for SSI purposes if they “hold themselves out as20husband and wife to their community,” even though they do not meet the legal definition for marriage in the state in which they live. The expanded definition of marriage applies to situations where either one or both members of a couple are receiving SSI.

Typically when applying for SSI, proof of marital status is not required if the person does not live with an unrelated person of the opposite sex, and claims not to be married. However, if a person lives with an unrelated person of the opposite sex, each must explain their relationship and answer certain questions. Some of these questions include what names the two are known by, whether they introduce themselves as “husband and wife,” what names they use on their mail, who owns or rents their home, and if there are any bills, installment contracts, tax returns or other papers that show them as husband and wife.

How people answer those questions, along with other factors, is used by SSA to determine whether two individuals have “held themselves out to the community as married." Therefore, SSA can consider a couple to be married even if the couple has never been legally married.

Too often, people with disabilities who rely on SSI choose to live secretly with a partner to maintain vital benefits at amounts that barely cover basic food and shelter costs.

The U.S. Supreme Court has found that SSA’s marriage penalty does not violate the Due Process Clause of the Fifth Amendment, which prevents the government from depriving citizens of property, without due process. Unless another avenue for legal challenge emerges, Congress is the remedy for any potential “fix” that would change SSA regulations so that each beneficiary is treated as an individual.

Up Close & Personal – Michelle Obama Visits CU-Boulder!

2008-10-04T22:21:00.006-06:00

A word from Tammy: I try to keep my blog pretty neutral concerning a handful of topics. Politics at the top of the list! But I must post this one! And trust me, if McCain's wife came to my town...we would have a different message, but....we'd go! :-)

Sorry this is a bit outdated...

----------------------------------

Dustin here. I am filling in for Tammy as blogger on this one because she is way too busy with babies, school, homework, Power Soccer, and other stuff.

It all began Tuesday, when we got word (about the same time the rest of Colorado did), that Michelle Obama would be speaking at The Rally for Change at our very own University of Colorado (hereafter referred to as CU, and no, for those out of state readers, I didn’t transpose those two letters, it’s just how it is) in breathtaking Boulder, Colorado!

We of course took immediate action to prepare for this event located walking distance from our home. Tammy arranged for Bonnie to watch the kids. Wednesday morning while I took Benny to preschool, Tammy put together Power Soccer flyers to hand out to all users of motorized wheelchairs we might encounter (which turned out to be seven). As soon as Bonnie arrived we hurried out the door with a hastily prepared bag of snacks and water (forgetting Tammy’s sunhat and sunscreen).

We did RSVP Tuesday with the Obama campaign but this did not guarantee us entrance to the event – it was first come, first serve. Doors were to open at 10AM . We arrived at Farrand Field at about 9:30AM. There were several long lines with campaign volunteers at the end of each making sure no one else was added to the line. We would ask “where do we get in line?” and were pointed half way across campus. Luckily we eventually asked someone who knew there was ADA designated seating (which is really close to the stage) and we were among the first ushered into the event. Wow! They had those dogs busy sniffing for bombs and whatever for a long time! How much can you sweep the same area before deciding it’s clean?

We got sunburned waiting for the event to start, even after barrowing a baby’s sunscreen. It was a very sunny day! At one point, Tammy decided to have me tape the “reserved” sign, with a picture of Obama’s logo and the wheelchair symbol, on her head to shade her face.

Maggie Udall (Representative Mark Udall’s wife) came over, shook our hands and talked to us. Our friend Julie told Maggie to thank Mark Udall for supporting the Community Choice Act (ok, I admit I whispered that in her ear – Julie didn’t realize at the time that Maggie was Mark Udall’s wife – it was funny!). Governor Ritter’s wife was also there but she wasn’t as eager to mingle as Maggie and Michelle.

After her speech, Michelle took ample time to shake hands and speak with individuals. It did get kinda scary because as Michelle got closer to us, the crowd did also. Luckily Tammy’s chair protected us from most of the pushing and shoving. One woman did get pressed against Tammy & wheelchair (causing only minor injuries but inducing a fair amount of screaming. Only one individual in the crowd was met with a gurney after being knocked down, but alas I digress…

As I said, Michelle took plenty of time to shake hands and greet the crowd – I shook Michelle’s hand and she listened to me while shaking other people’s hands.

“Please tell Barack Thank you for supporting the Community Choice Act for people with disabilities.”

“Barack has the disability vote. He is a real advocate for people with disabilities”.

“This is my wife; We’ve got two kids too” and she asked what their ages were.

She shook hands with Tammy, and I guess Tammy scratched Michelle. Tammy says Michelle didn’t seem to notice, but Tammy is still traumatized. I told her if we see Michelle on TV with bandages on her arm, we’ll know why. I didn’t know that Michelle’s father had MS until today. I guess everyone else already knew that.

I was really impressed with Michelle and I think she’ll make a great First Lady.

The pictures/ video clips I took were great if I do say so myself. It’s amazing what footage you can get standing on a folding chair! Move over Press and Media, Dustin is here!

Introducing....The Colorado ROCKETS!

2008-09-29T16:01:00.014-06:00

My Power Soccer virginity was lost abruptly on March 8th of this year. It is Robin who got me into this, funny, that woman gets me into all kinds of things. She urged me to attend something called a Power Soccer clinic right here in Boulder.

My pertinent adaptive sports background…..

I thought Robin was nuts, and it would be da-ja-vue of my fairly isolating adolescence. I would go to these adaptive sports camps, and be completely left out, as all of the older folks with six packs and groovy sports chairs shot baskets, played racketball, tennis, softball, etc., and even battled it out at rugby. Nobody really wanted me to be there, I was pretty useless to the other players and the coaches, and I needed to be fed and helped in the restroom, etc. I should mention here that, in reality, power wheelchair users are generally excluded from these wheelchair sports, expecially in competition. Why did I go to this camp if it was emotional torture? Two reasons:

1) I did not want to sit at home all summer, and it was either go to this yearly sports camp or attend this other day camp where I could become skilled at watching people make crafts for me and a skilled movie-watcher, and go on ridiculously boring field-trips.
2) I am naturally competitive (LOLOL) and a perfectionist and really truly wanted to play a sport! DAMIT!!!!!!!!!!!!

It gets even sadder. As summer approached, and each night during these sports camps, I would fantasize that magic was just waiting for me, that I’d show up on the court and VWALA, I would be able to kick some wheelchair ass! This was my life for years…Until I was old enough and smart enough to give up on sports altogether.

But in 2001, I discovered individual sports, such as rafting, horseback riding, skiing, swimming, and cycling. I often dis Utah, a personal hobby, but I do have to give it up for two awesome organizations – SPLORE and the National Ability Center. I became a serious jock in my own right!

End of background!

I was curious, and Robin’s cool, so I decided ‘what the hey, we can be isolated together’. I am rolling with laughter as I type this! It was Robin and I, and two other peeps in powerchairs, ripping the court up playing soccer! IT WAS US!!!!!!!!!! Not the guys in the sports chairs with the six packs. WE WERE PLAYING A COMPETIVE TEAM SPORT! Basically, if you can drive a power wheelchair and track the ball, you can play this sport independently! Whatta concept!!!!!!

Okay, well, we gave playing our best shot that day! Robin, who used to play on a team, and the coach that Boulder brought in for the clinic from the Bay Area, knew what they were doing. Myself, and two other players, just tried to make contact with the ball without ramming each other too badly. It was incredibly frustrating for me because I had never even seen a regular soccer game, and my chair was not programmed with the best settings to play.

Nonetheless, I saw potential!

And my mission began!

My mission: To bring Power Soccer to the Colorado!

Yesterday was the Colorado ROCKETS first practice, and let me tell ya’all…WE KICKED SOME MAJOR BALL!!!!!!!!!!! ;-) It was such fun for all involved! Truly, practice was better than I ever dreamed it could be, because of the individual skill and drive that each player brought to the court! We have an incredible blend of both talent and personality in our midst, and the Colorado ROCKETS are destined for blast-off! Six strong players is an unbelievable start to making this a big-time deal. We have the best volunteers ever supporting us!

THANK YOU! THANK YOU! THANK YOU!

Just one week ago, we had just two guards, two balls and three dates for the court. Yesterday we had six guards (four of which were made by a volunteer!), and fourteen dates for the court. And by next practice, we will have nine guards and four balls, and I’m expecting perhaps eight players!

WE ROCK, WE ROLL
WE’RE GOING TO
TEAR THE HOUSE DOWN

Check out the many faces of Colorado ROCKETS......... click on pic to enlarge/slow down

A finalized practice schedule is below. If you know anyone in Colorado who might be interested in Power Soccer, please have them e-mail me!

Autumn 2008 Dates

- Oct 5th 3-5PM Sun

- Oct 19th 3-5PM Sun

- Nov 2nd 2-5PM Sun

- Nov 22nd 2-5PM Sat

- Dec 6th 3:30-5:30PM Sat

~~- Dec 20th~~ CXL'D

Winter/Spring 2009 Dates

- Jan 11th 5-8PM Sun

- Jan 25th 5-8PM Sun

- Jan 11th 5-8PM Sun

- Jan 25th 5-8PM Sun

- Feb 1st 5-8PM Sun

- Feb 15th 5-8PM Sun

- March 1st 5-8PM Sun

- March 15th 5-8PM Sun

ADAPT Action Day 5: TEAR DOWN THE WALLS!

2008-09-19T09:53:00.009-06:00

Wednesday morning:
The call went out for volunteers to “Tear Down the Walls of the Nursing Home” and I was all over it!

As I sat in front of the replica waiting for the go ahead to bash the sucker, these were my thoughts: This is MY time! Desty is over with Tim, Dustin has the good sense to keep Benny outta the way. This is MY time! I allowed myself to explore my mess of feelings, and really get into it.

Mostly, I was excited!!!!!!!!!!!!!!! I had been waiting for this for ten years!!!!!!!!!!!! It has been ten years since my very brief incarceration. It was very brief but it changed my life forever. And over the years the countless victims of nursing homes that I have met with, and my fears of losing services....sigh....I can’t go there.

“TEAR DOWN THE WALLS! TEAR DOWN THE WALLS!

TEAR DOWN THE WALLS! TEAR DOWN THE WALLS!

LOL My boy was cheering me on! I was again trapped by the nursing home!

Unfortunately, my exhaustion conquered my will-power, and, as you see in the next video, the kids are a much better demolition crew than I am!

From there we went on the Hill to meet with public officials – basically, a lobby day. It was boring, and not enough action for the kids, so we returned to the hotel.

AND look at what a little protesting did to my Angel Boy! ;-)Wednesday evening’s meeting (minus some folks that had to leave early)… The groovy chick with the mike is my friend Anita - I LOVE HER CHANTS AND SONGS!

Day 5 Album.....

ADAPT Action Day 4: Hello Senate, Good Coppers

2008-09-18T08:52:00.003-06:00

Tuesday rocked! Out by 7a.m., and marching towards DUH City to relieve the night shift by 7:45a.m. Okay, Dustin did have to drag my limp body outta bed, help me pop two Maximum Strength Excedrin and chug a Dr. Pepper to convince me that I could survive on less than six hours of sleep in two nights, but, lo and behold, we were present and accounted for when the time came!

We spent the morning at DUH City. Dustin continued designing signs for the City, and solicited the help of Benny and Desty. Check out their work in this album...

I love the Capitol Police! At ~11:30 our group went to Senator Chris Dodd's (D, CT) office, as he is one of the leaders with power to fix the housing crisis for low-income people with disabilities. A mom of an inquisitive preschooler couldn't have asked for a better sit-in situation! Until a complaint was filed, no law was being broken. We sat there all afternoon trying to get a committment, talking to staffers, chanting and singing. The four of us (and a few others) who needed to be clear of trouble, stayed right outside Dodd's door. Benny made many Officer Friends and gave dozens of high-fives. "You gotta excercise your rights little man and we're here to protect you." One huge copper even took him to the restroom. Benny sat and relaxed to the Jungle Book 2 mid-protest! Desty slept until the last 25 minutes! The 1st arrest warning came after ~3 hours, and we scooted. Dodd received hundreds of calls from around the country while we were there in support of Affordable, Accessible, Integrated Housing.

Video clips from the inside......

And that evening......

I did less hovering and more trusting on this action - LOL! As a good friend said on the first day - "Allllllll these folks have your back." I knew in Chicago, I knew in DC last Spring, but it helps that everyone knows us now, that Benny is older, and that Desty isn't one to run off. Instead of hovering, when they are interacting with others, I get to breathe and socialize! - Cool concept for me!

ADAPT Action Day 3: DUH City, the Hunt and Desty's Improv Show

2008-09-16T21:36:00.012-06:00

Monday morning began very early for Dustin and I – 2:15a.m. to be exact! At 3:30a.m Dustin tucked the kiddos into their charriot and by 4:15a.m. we were marching the streets of D.C.! Not a very long march, HUD, aka DUH City, is conveniently located just two blocks from our hotel. Desty was out cold, but as tired as Benny was, he wasn’t going to miss the first parade of the week!

For the sake of not re-inventing the wheel here, to understand the technicalities of exactly what we did and why, check out this little video or the DUH City Times, and also see Desty's debut. I will say that I have been on nine actions since 1998, and this was truly an amazing experience. The plaza outside of HUD became our home in minutes, right before our eyes tent city became a reality.

Some of the ADAPT kids had found each other by the second hour!

DUH City is like a huge powwow, with press conferences, concerts, theatre, and incredible unity and power. Occupied 24 hours a day Monday thru Wednesday – the Burton’s have the day shift! An album from Monday........

The day was perfect! That is until ~6p.m. when we noticed a Boulder ADAPTer was lost in D.C. and probably needed his medication. Ugh! With no idea of where to look, I combed the National Mall and all around DUH City by myself. I went right past a hold-up in my search. Finally, Tim and I got the police searching, and not long after they found the guy lost in China Town. He is a wanderer. Twenty-two hours after the police and medics returned him, I’m fighting frustration and an overwhelming sense of responsibility. I'm just glad he is okay...not that I don't wanna kill him myself! My stomach is in a knot.

And that is the reason this post is a day late!

Today, though I’m exhausted, etc., was an absolutely fabulous day! More tomorrow…….
WAIT!!!!!!!!!!!!!!!!!!!!

I can't bring myself to publish without including this video from tonight! (LOLOL We didn't bother with a hair-do today!)

ADAPT Action Day 2: The Big One and the White House

2008-09-14T19:09:00.007-06:00

Today was a day of prep work - lots of meetings that we needn't attend. We did attend the "Big Meeting". It's taken us three actions to figure out how to be able to enjoy these big meetings, and I do declare that we are pretty darn clever!LOLOL Scooby-Doo to the rescue! Beyond those doors was the meeting, and we heard all of it! I was really relieved to find that our friends from Missoula are in our group this time. We lovingly call them our "ADAPT family advocates" - when in doubt regarding the kiddos, we hunt them down.

This evening we walked/rolled/ran to the White House! Benny ran from the Smithsonian to the White House! We arrived in time to catch this patriotic moment........

Here's a small album......

Tomorrow the work begins! Very, Very Early!!!!!!!!!!!

I am having the time of my life with Desty!!!!!!!!!!!!!!!!!! :-)

ADAPT Action Day 1: Traveling and Illegal Wading

2008-09-14T13:20:00.006-06:00

We're in the Nation's Capitol - Washington D.C.! We left our home yesterday at 5:30a.m. mountain time, and checked in at ~4pm eastern time. I could have kissed the floor at the Holiday Inn! The kids were great on the flights, but it was a loooong time to travel. I was exhausted. Dustin was charged! We went to the national mall and did some illegal wading at the World War II Memorial on the way to Lincoln's Memorial. We saw other people doing it :-)!

Once done, we saw the sign! LOL Memories!

Check out photos from Day 1...

Fishes Of Our Own

2008-09-12T20:09:00.007-06:00

On Tuesday, Desty swam for the first time in the big kids class! Mom and Dad were very anxious, but our princess was a STAR! She listened, and had a blast. She looked so big to me!

Benny swam on Wednesday...(the guy is in training)

The next time I post, we will be in Washington DC! Benny packed himself days ago.........I must go pack! LOL

The Dead Lift

2008-09-09T18:37:00.012-06:00

My van lift hit the dust over the weekend. Well, it actually hit the dust many months ago but we've been doctoring it and threatening it with its pathetic life to survive for our family. Let me say, the lift worked great for approximately six months - we loved it! NO, that is a lie - we truly loved the van, not the lift, and we loved having so many seats for our helpers and visitors. For those of you that don't know, this lift hung off a hitch on the back of our van. It was literally an Out-Sider. We tried to love the lift, because to the best of our knowledge, it was the best option for our needs. Besides, we had no vehicle from the end of December '06 thru March '07, and no lift until late April, so the lift brought a sense of freedom to our family that we had missed. Both the van and the lift were purchased with a lot of effort and love from many people.

LOLOL STORY-TIME!!! The lift and chair flop/shake/jerk around on the back of the van. In June, on our way to Denver, we were being honked at, shouted at and waved at. I was frightened - I thought the drivers had gone mad! Off the freeway, we discovered that my wheelchair's remote had fallen off and had been dragging for several miles. It was charred!

The weight of my chair just wore the lift out. I can't blame it. Getting rear-ended two weeks ago definitely didn't make it any stronger. And, It is getting much more difficult for me to climb into the van with my bad hip. I keep falling and it's ugly. It's hard on me and whoever is trying to help.

Adaptive Automobility fixes our lift. We frequent their waiting room. Four months ago we discovered our Dream Machine - the Chevy Uplander LS conversion that seats SEVEN people, with one wheelchair (or two, if the backseat is up). We tried one that had already been sold, and it was perfect. My chair fits right between two bucket seats where the carseats would go. For weeks we considered pursuing one, but having to pay for Benny's preschool squashed our far-out fantasies. AA got a another Pre-Owned 2007 Chevrolet UplanderLS on the lot - they say with us in mind LOL - and we took it out for a long spin. It may not be the sexiest thing on the market, but it's a nice ride! It drives like an SUV.

Watch these video clips.....

The back seat easily folds up securely to allow the wheelchair to pass through. It remains up unless needed to seat additional people.

It doesn't look like it from this angle, but the backseat actually has plenty of leg room.

Since our lift is dead, and there is a better option, we're going for the gold! As soon as the Department of Voc Rehab authorizes payment of the conversion portion, we'll get as much as we can for our van, and come up with enough to pay the chassis of the Uplander
Wish us luck!

Busy Week

2008-09-06T20:10:00.004-06:00

Tuesday was a huge day in the life and times of our family. It was Benny's first official day at Sunflower Preschool! Desty and I took him to drop him off, and get him all registered, and settled. I was actually pretty un-phased by it, because he has been there so many times to check it out and for camp, and in past three weeks we've seen the owner of Sunflower at the store, and one of the teacher's at the fair. And he certainly was ready to get back to school!

The next three clips show different classrooms of Sunflower Preschool. You will notice in the first clip, Dustin focuses in on three books - those are our favorite kid books regarding disability and/or diversity. From top of the bookshelf to the bottom: Mama Zooms, A RainBow Of Friends, and Zoom! We donated all three of them to the school, and each family is getting a copy of Mama Zooms and A Rainbow of Friends at Back 2 School Night.

You are only seeing half of the outdoor classroom here.

Desty and I zoooomed back to the house after dropping Benny off, just in time to drive Vanessa and Cedric to the airport and pick up Dustin's sister, Rayna, from the airport. Rayna is playing nanny for a week, so that I can get all of my homework and other jobs done before we head for DC. She is fabulous with the children, but I'm afraid we need Jo Frost, ABC's Super Nanny right now. Benny is presently killing us with his heightened sense of entitlement and incredible bossiness - for another blog. Hopefully, this is just a phase that we can all (us, his baby sitter, his classmates and teachers) survive! I anticipate he will be thrilled and well-behaved in DC, as he will have all of my attention and he loves ADAPT. Hear my siiiiiiiiiiiiiiiiiiiiiiiigh! ;-)

On Wednesday, I applied for graduation (12/13/08), and began an evening Finance class. Finance should go much smoother than Accounting - I had the professor for Business Law and loved him. Sitting in his class made me realize just how cruel and insane my Accounting professor was!

I have literally been doing homework all week. These classes have 1st Night Assignments, which includes reading three chapters and writing 3-5 page papers. So I've been doing those AND homework for the next two weeks. I began Business Research and Methodologies this morning at 8a.m. It was Thursday morning when it donned on me that I will be up and out the door by 8:15a.m. on M - F to take Benny to preschool, and 7:00a.m. on Saturday for the next 16 weeks for my school! Ugh! Not that I'm not usually awake with the birds and kids, but I'm a P.J. Lounger. At least Benny's school is close....

And to close with a grin, watch this!

In Great Company

2008-08-31T10:28:00.027-06:00

Our DNC volunteer guests left early on Wednesday morning to head home after four days of political life/festivities. I feel incredibly lucky to know Carrie and Jonas! I love Carrie to death, and I wish she lived closer - she's one of those people I just wanna be around - partially because I don't know what she's gonna do next! This Obama Mama/Baby pair is hilarious! Luckily, Carrie was into our 80's nights with PUNKY BREWSTER, 3's Company and the Golden Girls.

We have great company this weekend - Vanessa and her sweet barely 2 year old boy, Cedric, are hanging out with our brew until Tuesday. Interestingly enough, Vanessa worked as my PCA during most of my pregnancy with Benny, then ~21 months later returned to work for me for most of her pregnancy!

Yesterday we ate with the fish ------ literally -------- at the Downtown Aquarium in Denver! Vanessa had Grilled Mahi Mahi & Shrimp, Dustin and I split the Fish 'N Chips and the three kiddos had Mac N Cheese, of course. Guests eat around a 150,000 gallon aquarium filled with fishy creatures..."Which one's sister/brother am I eating?" It's a great restaurant to take young'ns to, because it's loud enough to not worry much about voice volume, and the fishies are quite entertaining while waiting for grubs. The fish is always extraordinary fresh and tastey too! ;-)

The actual aquarium is fabulous! These are a few video clips...

There's even a flash flood simulator. Desty and I got SOAKED! She is such a soap star!

And Benny, Desty and I got shot by the Big Squirt on our way to the van...
It was truly a great time for all! THEN I realized how much dinero we spent :-0

Oh man - what have I done?! Seriously - I remain stunned sick at the price of 2.5 hours of food, fun and education!

On Saturday, we went to Boulder's 10th annual Hometown Fair. It was HOT for the mamas and the papa, but the three tots had a great time. Cedric is train-crazy...

Play this next video for a surprise.......

And when Vanessa and Cedric fly out tomorrow, Dustin's sister flies in for a week! Rayna flies out on the 9th of September, and four days later, we are bound for DC!

School for both Benny and I, Music Lessons for Benny, and Swimming for both kids begin this week.

Speech Undelivered/Brain-Dump

2008-08-27T19:29:00.012-06:00

A Brain-Dump....

My day began by terminating one of my new Personal Care Assistants.

So this afternoon, I was at the Rally to Fix Healthcare Now at the DNC, and as I was being ushered toward the stage's ramp, the head honcho/manager stopped me. It seems I was not on the master schedule. LOL I will spare you what I went through to prepare the darn speech, make arrangements for the kids to stay in Boulder, and just get there and back in time to retrieve the kids. Yes, I am annoyed/exhausted/deflated regarding the disorganization of the rally, but from what I could see and hear from behind the stage, it was really an awesome rally with an unbelievable turnout.

This is a great lead in to try to explain a controversial subject. I am obviously a fairly die-hard ADAPTer. I also support the Colorado Quality Home Care Campaign, work of the Service Employees International Union, and giving our employees the option of organizing. Yes, we must free folks and get community based services and supports. That's a given! But let's take it one step further. When we are in our homes, getting these services...the system is often broken. Agency-based home health care is just terrible, in my honest opinion, at least for the Tammy's of the world. I won't settle for anything less than Consumer-Directed Services.

My disgust with agencies is not for this post; here I reference Consumer-Directed Services. Personal Care Assistants are paid crap for strenuous labor. They have no benefits. They must work long hours to keep bread on the table. They assist us in our daily lives; to be able to live independently. That is worth something! What happens when a PCA gets sick? We can't assist them in return. No health insurance. Now think on this: You have a disability such as mine, you have an PCA that works 30/40 hours a week and you truly value their performance. They get sick. No health insurance. As much as they may love working for you and vice verse, it is certainly not in their best interest to continue. High turnover! No attendants. Constant struggle to keep a workforce. And if employees are paid crap, can you really expect high quality care? NO!

Why in the heck does society not value 'caretakers'???

Some people may think it's wrong to fight for "quality" when a lot of folks can't even get services, or that valuing the workforce will take money away from serving more folks. I simply disagree. People with disabilities who cannot keep PCA's to provide essential services, often end up institutionalized or re-institutionalized, PEOPLES!!! (Like my grammar? ;-)

This issue really frustrates me. One issue does not take away from the other, for goodness sakes. The way I see it, freedom/community choice and quality home care are complimentary, as are freedom/community choice and health care. After all, if we're dead from lack of health care, we do not need home services! EVERY AMERICAN NEEDS QUALITY HEALTH CARE!

If this post is clear as mud, we're in the same boat! Can I have my cake and eat it too.....please? ADAPT is a very strong, wonderful and proud group. But, in the end, I could care less if it's ADAPT's bill or Easter Seal's bill (LOL) that sets our people free! Freedom will reign! Everybody wins!

At one point, several years ago, ADAPT was fighting to close a huuuuuuuge institution in California. SEIU was fighting to keep it open so that the workers would remain employed, from my very limited understanding. I actually remember protesting at SEIU. Our pressure worked, SEIU became supporters. They realize that these nursing home jobs will just be shifted into people's homes, etc. SEIU is all for home care now. The disability community/ADAPT and SEIU have actually created successful partnerships in a couple of states; their systems are better! Generally, however, distrust persists.

Can't we all just move onward and get along?!

----------------------------

Before the Healthcare rally, we went to Atlantis Community, the home of ADAPT's birth, and listened to a quick speech by Kareem Dale, the Obama's National Disability Vote Director.

Breaking News and Cutest pics

2008-08-25T14:08:00.018-06:00

BREAKING NEWS:
I am speaking at the
Rally to Fix Healthcare Now
at the DNC this Wednesday!
AND.....
I got a C+ in Accounting!!!!!!!!!!!!!!!!!

I AM THE CHAMPIAN!!!!!!!!
I WILL GRADUATE IN DECEMBER
AND
I NEVER HAVE TO GO BACK TO THAT AWFUL CLASS!!!!!

This weekend we made a round-about trek up to northern Wyoming to visit Grandma Miner. Not an hour out, we were rear-ended by a little girl with a driver's license. After massive spinning by the girl, and swerving by us, everyone was physically unharmed. It was truly a miracle that Dustin was able to keep us on the road, and even moreso that a semi stopped just before hitting the girl. Our lift slashed the front of her already beat-up car, but the lift is basically as it was prior to the incident (this just two days after its nearly monthly $90 tightening). Events such as this renew my gratitude for life, and I am reminded that accidents can happen to anyone. I still worry about the girl...

When Dustin was eight years old, his family hatchback (six people squished inside) hit a semi truck. Family members flew out of the car - there were serious injuries but all survived. I used to be freakish when we'd take road trips - I lightened up when my friend lent(gave?!?) me this magnificant HoMedics Squish Massaging Neck Pillow- my special travel lover. Okay - I'm freakish again!

We were up there for just one full day, but it was long enough to snap the cutest picture in the world!

Ohh! and the second cutest picture in the world! Benny and Desty came home to a huge sandy surprise! While the kids were away, Lowell and a friend built Benny a 5X5 homade sandbox as a belated birthday gift...
It's portable and perfect for our dirt/weed/compost corner behind the shed. They played 'til bed, and quickly got dressed this morning to continue the fun.
Our kids are VERY loved! ;-)

We are hosting the coooolest DNC volunteers in our home this week! Thanks, Holly, for leading them to us! A liberated mama and her 5-month-old future politician are helping Obama's campaign - Mamas & Babies for Obama! LOL The little guy is so cute! And, I can't help but mention, this fabulous duo is LDS! Verrrrrry cool stuff!

Fundraising Marathon

2008-08-21T09:27:00.011-06:00

***If you were referred to this blog by Boulder ADAPT activists, WELCOME! You may want to check out these previous posts: Boulder ADAPT, Awesome Footage and Creedo for Support.

THANK YOU FOR YOUR SUPPORT!***

WHATTA WEEK!!!!!!!! Boulder ADAPT has been doing a fundraising marathon since last Friday. Seven straight days of soliciting to the generous patrons of our local grocery store. Seven days, or 14 hours to be precise! We raised $902.00 all together and easily educated over 1,000 people. The engaging discussions made up for the moments of discomfort. We live in a truly wonderful community!

Dustin catches folks interest with his natural salesmanship and his passion for the cause

I choose a different approach since I talk pretty slow..."Hi! How are you today?! Have a great day!" and if they gave me a few seconds, "We are trying to raise money to go to Washington DC........". If they took info, I was thrilled!

Other Boulder ADAPTers helped throughout the week, making this fundraising marathon a huge success!

As of today, THE BURTON's WILL BE AT THE ADAPT ACTION IN SEPTEMBER! We purchased the airfare tickets early this morning for just $242 per ticket - not too bad! Now, all we hafta do is raise enough for the second half of the room fee - ~$700 more to go! Just shoot me!!! ;-) Nah, it shouldn't be that hard, as we have others raising $ too.

Now for a laugh......Okay, the fundraiser definitely took a toll on my mind! Here are my ideas for our next fundraiser.

You Decide!

Fundraising Idea #1: I hear that if you donate $5 to the Hillary campaign, you can be entered in a drawing to win a dinner with her, because she "wants to hear your ideas about America!" We can make it work for us.........Donate $10 to Boulder ADAPT, and a member will come to your house for a home-cooked meal that you prepare, because we want to hear your ideas about disability related issues (and we're tired of mac 'n cheese!)

Fundraising Idea #2: Selling "Alien Sighting" photos for $15/each. Get 'em before the government confiscates them!

My next post will be on a completely different subject, rest assured!

Kindred Spirits and Awesome Footage

2008-08-15T18:50:00.015-06:00

As you may recall from my "A Blogger's World" post, I'm on this Boulder Mommy's Listserv that goes out to 1200+ moms. I sent out an announcement for our grocery store table fundraiser - that is definitely not what is soooo great! The greatness lies in this reply from a mom named Mari Dart, and that several hundred+ people are going to read it, and think "Wow! This is a real issue!"

Read below...

Thank you for posting this!
Most people don't know that there are 51 million Americans with disabilities today - and that number grows everyday.
While many people are vaguely familiar with the Americans with Disabilities Act
(passed in 1989), they don't know that it was the first legislation of it's kind in the history of the world; that it freed and empowered MORE people than the original civil rights legislation of the early 60's; that it kicked off world wide awareness and passage of laws to empower people with disabilities, that continues to this day.
It has been argued that it is perhaps the most important civil rights legislation in the 21st century. But it has been under attack from the far right and people who do not understand nor have read the language of the act. It's protections have been chipped away at steadily for the last 15 years.
ADAPT and other disability rights groups are at the forefront of this fight. They are fearless, tireless and vital soldiers in the quest for justice and acceptance.
The odds are that someone in your family either is or will be disabled in the course of your lifetime. This is NOT someone elses issue, it belongs to and effects every
single one of us.
Your support is deeply appreciated and DOES make a difference.

She then sent me a link, which led me to discover that she is Mari Dart, niece of "Father of the Americans with Disabilities Act", the great Justin Dart.

Words fail to describe my feelings at this point.

We now believe we are kindred spirits, and I'm looking forward to sharing stories, and love, with Mari.

So ENJOY some awsome footage of last Saturday's Fun Run

Find more videos like this on EndeavorFreedomTV

Courtesy of the one and only, Tim Wheat!

The pic below was taken in April, at ADAPT's 25th Anniversary Celebration in DC, where, among other things, we ran in a national fun run. This is my favorite pic!

I also really like this one!

If we can go, September's action will be Desty's induction into the ADAPT fold!

AND FINALLY....A DIGITAL ANSWER TO THE QUESTION...

"WHY????"

Find more videos like this on EndeavorFreedomTV

Again, courtesy of the one and only, Tim Wheat!

Before/After Preschool and.....the VOTE!

2008-08-12T19:08:00.013-06:00

Benny went to Sunflower Preschool this morning looking like this:

And 4 hours later when I picked him up, he was a.....

SCAAAREY ROARING LION!

HOLY LION!!! YAY FOR SUNFLOWER PRESCHOOL!!! (applause please!) Today wasn't even his day to attend but we have a scheduling conflict on Friday, so today was his lucky day!

-------------------------------------------------

Today was Primary Election Day for Colorado. Introducing...........

The Three ~~Amigos~~ VOTERS

Dustin, Lowell and I celebrate voting!

DID YOU????

A Blogger's World! and Benny Moment

2008-08-10T17:23:00.006-06:00

Typically, I would not post twice in one day, however, I CANNOT CONTAIN MYSELF!

Many good things have come about from The Life and Times of a Mom On WheelZ! I have reconnected with many old friends, which means a great deal to me. We have printed each post and created journals for the kids. Many people have thanked me, as through this blog friends are able to learn so much about me and us, that they'd otherwise never know. I love those e-mails! It means that this blog means something to someone more than myself, and that it's working...People are being touched, entertained, and maybe even a little bit enlightened. That is cool; that was my point in creating this silly blog.

One of my favorite things about this blog is this: My readership is truly ecclectic - friends and readers from every point on the continuum read and comment. They, at either end, may not agree with everything they read, sometimes I will get under their skin, but hopefully they will come back again and have a completely different experience!

THAT is the sign of a great blog, in my opinion. So far, so good.

Let me tell you a couple other cool cyber-related things that have happened in my life this week...

I'm on this Boulder Mommy listserv, and to make a verrrrrrry long story short, I was sick of mommy's being judgemental of other mommy's, and posted about my sins as an imperfect mommy, and called for an end to, basically, mommy elitism. My "call" ain't gonna change crap with all the estrogen permeating thru the life of this group; in fact, it was simply my estrogen working at it's best! Whatever you wanna call it, my post drew several good responses from other "sinful mommies", and perhaps I even made one or two imperfect mommy friends! I may start a listserv, Boulder's Sinful Moms, for those of us that do two or more of the following:

Make kids sleep in their own bed

Let kids have binkies

Let kids watch *some* TV shows

Do not purposefully sicken kids with Chicken Pox

Vaccinate kids

Let kids cry it out

Have kids that have tantrums (LOL No joke!)

Breastfed for 1 year or less

Use store-bought diapers

Dress kids in standard fabric clothing, and feed kids with standard kid diningware

Take kids to fastfood Playlands

Use strollers

Use bouncy-seats, swings, etc.

Don't eat all organic

Work

Sneak to Wally World once in awhile to save dough

Get tired

Need breaks and leave kids with sitters or family

I'm sure the list could go on. Note my sarcasm on the issue. No, I actually get lots of good ideas, recommendations, etc., from the Boulder Mommy listserv - I just hate the "my way is supreme, and I'm a better mom than you" attitudes. LOL My original point being I seemed to reach out to, and in the end after more communication, educate folks by posting.

And today I received this e-mail:

Tammy,

I am a member of a kids group called Heights Kids Group in Houston, TX. I recently posted a comment on the HKG website asking if there was anyone out there who was parenting with a physical disability. The only response came from someone who reads your blog. She gave me your email and the link to your husband's book recommendations on Amazon. I am interested in reading your blog. Can you send me the link?

Thank you.

Thank you to all my readers for your support!

As a final thought...I am short and fat (and trying to be proud of it!) When I sit on my knees at home - I'm kinda like a big beach ball ;-) Benny was hugging me, sitting in my lap today, and out of nowhere, he says, "Mommy, you are just the right size!" I asked, "What?!" and he said it again. I thanked my boy, and asked him to go tell his Daddy!!! LOLOL

Last Week As Seen On BlogSpot

2008-08-10T09:23:00.015-06:00

Burton News Flashes:

1) Benny started Sunflower Preschool Camp and loves it! He goes M, W and F from 8:30a.m. - 12:30p.m. for one more week to learn the ropes, takes a two week break, and then officially starts at Sunflower Preschool on September 2nd, and goes Monday - Friday, same time. His favorite activities so far consist of working (transferring water and sand from pales, etc and making ditches) in the GIANT SANDBOX, working at the water tables, playing in the wading pool and running through the sprinkler, building huge cities with real wooden blocks with the other boys, painting and finding large plastics insects all over the outdoor classroom and inquiring, "WHAT IS THIS??" He went on his first fieldtrip to the park on Friday and loved it. Monday was hard on his Mama - I was just dying to pick him up by 11:30, but I was good and waited! ;-)

2) I hired not one, but two of the candidates I had interviewed the week before to be my Personal Care Assistants! Amy started on Monday, and I think she'll be fabulous; Ashley, I believe will start regularly the Saturday after next, and I'm sure she'll be wonderful to have around - yo quiero mucho! Amy was indoctrinated in disability rights straight away, as we attended a union organizing meeting for attendants/PCA's on Wednesday (a complex, highly controversial blog entirely of it's own!)

3) Dustin became an Amazon Marketplace seller, donating proceeds from "Zoom!" and "A Rainbow of Friends" to Boulder ADAPT. If you want copies, he'll give 'em to you cheaper!

4) We bought (actually paid for by someone else!) a very snazzy and durable Bob double jogging stroller - a definite highlight of our week! It's light enough for me to handle very short distances, when needed. Before moving here, we bought a used dual Gozo stroller, and it got sooo much use, the metal frame broke in June. I have been the jogging stroller ever since!

5) Our FUN RUN was fuuuuuuuuuun! Our family combined ran/rolled 14 laps for Freedom! I think members have raised ~$500.00 in two days, and we expect more donations in the mail soon. We have ~1/3 the money needed for the September action in DC, but we miiiiiiiight actually make it! YAAAY!!!! I'll know more next weekend! I'm about to teach Desty to pout and say "but I'm only 1 and a half!" for free airfare! LOLOL She's saying "I'm two and three quarters!"

6) Do I really wanna graduate?

Better Than Late Night Entertainment

Yes, we love to match!

Nature Anyone?

Boulder ADAPT

2008-08-08T13:14:00.002-06:00

As I prepare to do a last minute fundraising push for Boulder ADAPT and the September 13th - 18th action in Washington DC, I am doing some self-reflection as to why I want to go next month, and why our family should go.

I hate fundraising! This is a rather recent discovery LOL since returning to Boulder ADAPT. In Utah, it was covered by ADAPT Utah's parent organization, DRAC. In Montana, I only had to raise enough for one room, and one flight, and living in a smaller community, it was easier to get small businesses to chip in. I had more time. I had more energy. I was an ADAPT newbie, the Purple Pistol, a frontliner. ROOOAAAR!!! My ADAPT birth took place right here in Boulder Colorado ten years ago. At the time, Boulder ADAPT had the financial support of it's then parent organization, CPWD. Boy, those were my wild days! Now we are our own 501(c)3, I'm the treasurer and seem to lead the fundraising efforts. I hate fundraising! ;-)

I have ~15 friends that I routinely hit up. The rest of you either are fundraising for ADAPT yourselves, or poorer than dirt like us or even moreso! I'm a mom, most of my social life is virtual nowadays. There's not much new blood to suck! So, we set up tables in front of grocery stores for two hours at a time, and a good day we make $125. Or we do mass mailings and get $500 profit. Our biggest fundraiser is a national ADAPT calendar, which someone else in our group so graciously produces. When we, 7/10 or so of Boulder ADAPT, go to national actions we need 2 rooms ($1000/room), and seven roundtrip tickets. You do the math! I hate fundraising! ;-)

But Dustin and I are passionate about the cause - that freedom is a right for those not convicted of a crime. That community choice (as opposed to nursing homes) should be an option everywhere in this country, to all the people of the land. That America needs accessible, affordable, integrated housing. Yah, yah, you've all heard this before LOL!!!

Our family may not be able to go this time -I haven't had the time or energy to invest, and we all will live. But it'll be like missing a family reunion, but better because we all choose freedom, and to fight for our rights!

Our last minute fundraising push is a fun run tomorrow morning. If I didn't hit you up for it this week and you want me to, please let me know! Small flat donation ($5, $10) are great - they add up!!

--------------------------------------

What/Who is Boulder ADAPT?
Boulder ADAPT is committed to the complete integration of people with disabilities into all aspects of community life. A monetary contribution to Boulder ADAPT is not charity; it goes exclusively to further education efforts to see systematic changes in our society for people with disabilities.

For nearly a decade, Boulder ADAPT has worked to change the institutional bias of Medicaid. Our federal long-term care policy requires institutions, while support for people with disabilities in our own homes is a Medicaid optional service. We have made much headway in changing the system, but the bias still remains in the federal program.

Reasonable housing options are also necessary to accomplish our goal of community integration. Obviously, to get people with disabilities out of nursing homes and institutions they need to have accessible, affordable places to live. In this, the need to end the institutional bias, and the need for accessible, affordable, integrated housing go hand-in-hand.

The Americans with Disabilities Act was enacted in 1990, and today people with disabilities are still being excluded from businesses, employment and programs due to lack of access. Much of Boulder ADAPT’s local work is concentrated on accessibility; Access is a Civil Right!

Active in our Community
In 2007 and 2008, Boulder ADAPT members . . .

Worked with Boulder Parks & Recreation to understand the need for Accessible Playgrounds, and embrace their responsibility for providing recreation for all families.

Demanded and received physical access into Parenting Place.

Requested the removal of the outdated and unnecessary “handicapped” descriptor in reference to people with disabilities.

Presented a workshop on Disability Rights as part of Martin Luther King Jr. Day.

Conducted an accessibility survey for Gunbarrel/ Twin Lakes area and presented our findings to Boulder County Commissioners.

Testified before the Governor’s Blue Ribbon Commission on Health Care.

Supported a mother with a disability during a custody hearing in Boulder.

Spoke before Boulder City Council regarding the lack of snow removal and the barriers this presents to citizens wishing to participate in our community.

Boulder ADAPT demonstrated once in Chicago and three separate times in Washington DC.

Creedo for Support

2008-08-03T21:40:00.005-06:00

I watched this video for the first time when I was living in Billings, MT nearly ten years ago. I was ~ two years being into the official disability rights movement. I had all sorts of feelings, but didn't know how to express them. LOLOL Now I do! ;-)

After so many years, I have found this, and you need to watch/listen to it! Then comment and tell me what you think! It may even get under some skin!

Find more videos like this on EndeavorFreedomTV

A Princess on Steroids and Personal Assistant Enterprise

2008-07-31T10:04:00.010-06:00

Desty's fine now. Desty (in all her 24lbs!) got her steroids on Tuesday, every 3 hours. We switched to the doctor that treated her last time, so he knew what worked, etc. Last time it took almost an entire day to find something she would respond to. Dr. Fries is concerned because it's summertime, and very rare to get it in the summer. He's sure she'll get it again in the fall, etc. (We have refills...) Then he tells me to bring her in if it gets worse that night like in February...that he life flighted a 5 yr old to Children's because of Croup like hers recently because they couldn't get an airway. LOL That's all I needed to hear! NOT!!! I always thought Croup was no biggie...

I'm just relieved and relieved and relieved more, that we made it to the doctor's office. I'm going back to inquire further about allergies and asthma. I'm not particularly happy that my 2.75 year old needs steroids...

-------------------

I am hiring a Personal Care Assistant , and for the first time in ten years of directing my own care, all the interviewees have been promising! This is unreal!!!!!!!

Okay, I did have one gal set an interview and then e-mailed...

"Did I mention that I will only be here until August 7th?"

Sorry, but DUH!!!! By the time we do the background check, and all the paperwork, it will be August 6th. At least she e-mailed instead of coming and wasting everyone's time. A pet peeve I have is when the opening is for i.e. 7-11a.m. and at the end of the interview, they say, "Now, I would love this job, but I have a scheduling conflict and wouldn't be available until 9a.m., but I can work all afternoon."

So I have an unprecedented problem! :-) Usually, the decision who to hire is very clear-cut - usually ~1/4 of the candidates would fit. This is actually a wonderful problem to have! I wish I could send some of these interviewees down to my friends in Englewood, who have had the worst experience this summer finding interviewees. College towns are always easier to find candidates.

Croup Hits Again

2008-07-29T04:18:00.004-06:00

About two hours ago, Desty awoke crying. Dustin brought her into me and I heard it...the freaking dreaded seal cough and stridor. "Oh God!", I thought, "What did we do to deserve this?!" Really, most kids get croup and it's nothing to worry about. When my daughter gets it, because she's so teeny, it typically means four hours in the ER or, last time it was a 32-hour hospitalization.

So I sit here, writing this blog, while Dustin sleeps with Desty, his cell phone in hand, and our home phone 2 feet from me, wondering how I'm ever going to be able to do the nine interviews I have scheduled for today and tomorrow for my Personal Assistant Enterprise. The pediatrician's office opens in three hours. This is like the old Mervyns commercials with the crowd waiting to rush in. This time I want to take her to the doctor's office, instead of the ER.

-----
A Trip Down Trauma Lane, Plus Tammy's SoapBox #43

On February 27th Benny was getting sick. We thought it was just another cold - it wasn't even bad for once. Miracle or mother's intuition, after getting finished with homework at ~2:30a.m. I decided to lie down in his room. Benny was thrilled, and jabbered on and off for half an hour. He was teasing me three minutes before having a febrile seizure, then becoming unconscious. When his seizure began, I screamed for Dustin, who arrived to work with Benny to ensure breathing and try to alert him. I was charged with going to the other end of the house to call 911. Now, I have a LifeLine medical alert system, but in January the company “upgraded” all units to a device that is inaccessible to me. I unsuccessfully tried to activate it. I then grabbed my cell phone and dialed 911. I obviously have a speech impairment and, complicating matters, I was absolutely stricken with panic. Though I have never called 911 before, I was sure the dispatcher automatically had my address (E-911) and immediately dispatched an ambulance. I repeated, “We need help now! My son had a seizure and we need help now!…” I eventually came to realize that the dispatcher did not have my address. Frantic and frustrated, it took eight more minutes for my address to be understood. We were lucky - the dispatcher was very patient and worked with me to get it correctly, and though we did not know, it was not an immediate life or death emergency. He was finally taken by ambulance to the hospital and diagnosed with a potentially fatal strand of influenza A.

On February 28th Destiny was rushed to the hospital and admitted for 32 hours with severe croup.

Influenza and croup are unrelated.......when it rains, it pours.

One thing I learned, and want to share with my friends and everyone, is the importance of having a land line for emergency calls. I called 911 on my cell phone for Benny, the operator couldn't understand our address, and it could not be traced. I rarely use my land line, and of course, it never occurred to me in the heat of the emergency. Many people only have cells. I now am an advocate for land lines!

Cell phones save lives. If a cell phone is the only phone around, use it.
If there is a wireline phone where you are, choose to call 911 from it, instead of a cell phone. Addresses are traceable from most wirelines, NOT necessarily cell phones at this time! (Read about what the FCC is requiring cell phone providers to do at Wireless 911 Services.)

-------
Yes, my LifeLine is accessible now.......

Destiny's Toes

2008-07-28T22:55:00.005-06:00

This is a reinactment of the show Desty put on at Chuck E Cheese's on Sunday (ignore the screaming boys in the background!) From what I gather, she plopped down between the games and began her act. Julie called me over, and there was a moment I couldn't believe my eyes...Destiny had drawn a small crowd of fans, and was so focused and flawless (she wasn't using her hands to hold the cup!)

LOL If we ever again get too hard up on money, we can go down to Pearl Street Mall and she can compete with the great Boulder Buskers!

COMING SOON...My baby is 4!

The Sound of.......Notes? and Other Musical Ramblings

2008-07-22T20:22:00.009-06:00

We got a steal today! We bought the floor model of a Yamaha YPG625 digi grand piano, and the owner slashed the price MUCH further because "I have the power!"... Yes! You da man!! He was truly a nice person, not just out for $$.

This baby is award-winning, and now WE OWN IT!!!!!!!!!!! :-) :-) :-)

We have all taken turns playing. I taught Dustin the only song I know, Mary Had A Little Lamb, and he's trying to teach himself Row, Row, Row Your Boat. Benny comes to me every 30 minutes or so and asks to play. To play, the kids must ask me or Dustin, go wash and dry their paws, come get a dry check from a parent, then finally they can play the "piano". Benny is actually calm on it, and there are moments I think "What a beautiful song!" He has been using both paws, one key at a time. He is also practicing notes and counts. Desty is not amused, thus far, because we won't let her pound it to pieces. Poor kid!

-------------------------
Tammy's Musical Ramblings

If you play the piano, don't call, just come visit us!! I will personally roll out the red carpet from the front door straight to the instrument in subject! ;-)

I'm craving to hear my favorites: Phantom of the Opera and most selections from Les Miserables..........My Goodness! The gut-wrenching, soul-stirring lyrics created by this story take me to a magical place, a sacred place in this world.

There was a time when men were kind
When their voices were soft
And their words inviting
There was a time when love was blind
And the world was a song
And the song was exciting
There was a time
Then it all went wrong

I dreamed a dream in time gone by
When hope was high
And life worth living
I dreamed that love would never die
I dreamed that God would be forgiving
Then I was young and unafraid
And dreams were made and used and wasted
There was no ransom to be paid
No song unsung, no wine untasted

But the tigers come at night
With their voices soft as thunder
As they tear your hope apart
And they turn your dream to shame

The beauty and despair in Fantine's voice, she is alone and unemployed and as desperate as a soul can be, and then the music behind her!

And this one (tx youtube!)

I dunno, maybe I'm crazy, but hearing and singing along to songs such as these greats is my aphrodisiac of sorts! As a teen I sung these and many others at the top of my pathetic little lungs and they each moved me differently. I was in my mid-twenties before I watched the movies and read the books, but these songs are the true story.

Seeing Les Mis live is at the top of my Bucket List.

Most people would not guess me as a musical lover.

Welcome to my blog!

More About Summer Activities

2008-07-19T10:10:00.009-06:00

It amazes me how our family song has taken! The kids sing the chorus over and over again, and when we are out rollin' about, they sing it as long as they can. If you visit our home, be prepared to be handed a sheet of music and sing along! LOLOL I love the song but it's beginning to drive me bonkers! AAAAAHHHHHHH!!! You too?! lol

On the topic of music, Benny continues to love his lessons. He knows the notes and the counts and some of the keys. A few months ago, my friend asked me if I wanted her piano, and narrow-sighted at the time, I turned her offer down. Oh how I kick myself! We're looking at electric pianos on Craigslist, and until we find one that we can afford, we're borrowing an awesome keyboard from yet a different artistic amigo. Who knows! - Maybe I will be publishing a concert someday! Or not! Okay I confess! - I am one of those mothers who hopes her house will be full of music!

Last Saturday we went to see "Pete the Pirate", a comedy, music, puppet and magic show at our local library. Whoda thought something so silly could keep a crowd roaring for so long?!

Summer is the best! Benny and Desty are enjoying their wading pool and makeshift water slide - we use this as a reward for taking their naps, and thus far it's been an ingenious summer parenting technique! Come October...well, we'll come up with something!

Dustin and I discovered Survival Swimming at Infant Aquatics in May 2007. We were looking for swimming lessons that would teach the kids to swim independently and teach water safety. This is important to me perhaps moreso as a mom with a disability, who'd be unable to react quickly in an accident. Of course, just because they have the skills, doesn't mean their safety is guaranteed, but it does significant improve their odds if they fall into a pool or even a lake. The first skill they learn is the float. The kids learn to get to a float from any position. It's not the "throw, sink or swim" lessons you may be imagining...

-------------------------

Hi Everyone, this is Dustin filling in while Tammy does her awful, terrible, horrendous Accounting homework. Infant Aquatics is really amazing! It's real cool to see babies swimming and floating! Yes, at first the lessons are not fun! In the beginning the babies or kiddos go 4 days a week for 10 mins a day; since they were just getting used to the water they were rather scared and they couldn't eat much before swimming. OK that's the end of Not Fun! Now that Benny and Destiny can swim they love swimming lessons! They go once a week for a 30 minute Fun Day to keep up on their skills. All week, every day we hear "When is my swimming day?". Last week Destiny missed her lesson because she wouldn't go to bed the night before and couldn't wake up in time. Today Destiny and I went swimming and she did the best swimming I've seen her do in a long time! She didn't want to take a break even for the group activity of "Motor Boat". Destiny is the oldest in her group called "Aqua Babies", where a parent goes with the child in a fun group. Usually, I'm the only dad but today there were 3 dads and 3 moms. This fall Desty will be swimming without me with a group of other kids and a teacher. It will be interesting to see how she does since as any of you who know her know - she is not quite so good at listening and following directions as Benny. We've kept her in "Aquababies" as long as we could but now she'll just have have to adjust - I'm sure she'll do better than a fish out of water. Infant Aquatics has great instructors - the kids love 'em and they really know what they're doing.

-------------------------

If the kids are supposed to be waiting on the platform, you can bet Benny is hanging or swimming off the side, practicing his skills and/or massaging his confidence. I'll post a clip of Desty swimming soon!

And then there's gymnastics which we all love! Since I've written about gymnastics in past posts, I'll leave it at that...

This One's For The Girls

2008-07-17T16:44:00.023-06:00

Just up from a nap, Desty briefs me on her nightmare. A big red scary monster stole her baby doll, and then I run him over with my chair and saved her baby. This clip is barely audible but with your volume maxxed, you can make out some of Desty's description. (Notice my accounting book in the background)

It is a fact that kids are a source of great entertainment. My daughter, given the time to express herself, can provide hours of non-stop story-telling, and does so with so much pure animation that I'm torn between A) She has the natural ability to take us to Hollywood, or B) She's delusional and I should be seeking professional help for her. Unfortunately (and very fortunately sometimes!) for her, Destiny is the second child and is frequently compared to her big, intense, ambitious brother, who is very aware of the world around him. It is sooooooo interesting to see the two of them interact. Desty is artistic, doesn't give much thought to the world, and allows her imagination to drive her wild!

No doubt, Desty is the daughter I dreamed of having (on the rare days I ventured to go there). Desty is super smart in select areas, and she chooses those areas very carefully. She's a tricky one too. For example, we had been singing our family theme song for two weeks, and Desty showed no interest in learning it. Instead she'd dance around the living room, or carry her little piano over to accompany us. Then one day outta nowhere, she ran into the living room and shouted, "Mommy, Daddy! Let's sing the Unconditional song!" Destiny proceeded to sing the entire chorus a cappella style. I was stunned! But that is definately how she works with most things.

Oftentimes I actually think she plays a little dumb, so not to compete with Benny. When we are one on one, she let's it all out. She seems to have what I call "Baby-itis" - she professes she wants to stay little and be a baby. In fact, I'm sure she'd be potty-trained if not for this. We're not ready to push her just yet.

This past month, she has really pefected her role as Miss Drama Princess! We joke about this but it is the truth - Desty is acting hormonal. Can two and a half year olds have PMS?!? We'll be eating dinner and suddenly...a piercing scream, followed by a tearful uncontrollable cry. "What is wrong? What happened?" we ask. "BENNY LOOKED AT ME!!!!!!!!!!!!" and then more hurt feeling crying. She'll carry five dolls around the house and if one falls, WATCH OUT! LOL

The newest mad Desty screams and cries, throws everything, pulls everything from her dresser and repeatedly slams her bedroom door. Unless she is going out with mom, or going to gymnastics or swimming, she requests to stay at home. And now I ask, anyone want to board her in eight more years, until she's at least 15 years????????????? :-) (Laura, I have you down!)

You'd never believe my little angel had it in her!

My girl - happy or momentarily heart-broken - makes my heart sing and I'm sure proud to be her mommy!

Another Quick Laugh

2008-07-13T10:30:00.004-06:00

After my previous two posts, this blog can use a little HUMOR! ;-)

Granted, my humor has always been a bit tainted.

This is one of Dave Lupton's "Crippen" cartoons that I love.......and, what do ya know, it kinda ties into my Trippin' post!

http://www.daveluptoncartoons.co.uk/crippen/cartoons/patronised/patronised002.html

BTW - Why does everything good seem to come from the UK?!?!

A Trip Inside My Mind

2008-07-11T20:29:00.006-06:00

Watta week! Probably the best thing that happened to me this week is I just scored a really nice, like-new 2006 Graco convertible car seat for $20.00! (Of the many things Diana taught me, cyber-recycling and cyber-yardsaling is a fave!) One of my other good friends is coming to visit with her almost 2 year old son pretty soon, and now we're ready for them! The carseat will become Desty's, and will grow with her as does Benny's.
LOLOL Yes, this has been a hard week for me! ;-) It's hard to live in the present when your heart and mind are several hundred miles away, isn't it? Despression doesn't come easy to me - I don't know what to do with it. Usually I am supporting people through their depression! I had so much work and homework to do upon returning home from SLC - it was a great excuse not to leave the house. Yesterday I had to get out because I have class on Thursday evenings, and we couldn't put our Costco trip off any longer. We decided to eat Hebrew National hotdogs for lunch at Costco, and while I was saving a table for us, I became a blubbering idiot for no apparent reason...A bit embarrassing, but it felt good!

I survived Accounting again!!!!!!! My nose gets browner by the class! I am searching for an Accounting tutor......I'm finding gobs of math tutors but none to tackle Accounting. Oh, I take that back - I found a service that would find a tutor in Accounting for $40.00/hr!

This blog is without photos because all of our photos are on my computer which crashed AGAIN on Tuesday. LOL So, I have stolen Dustin's laptop AGAIN (Sorry Babe! :-* )

And now, inside my mind: While in Utah, I met and spent a few hours with an older, very traditional woman that lives a very modest life in the corner of Utah. Several times she made comments that would normally really piss me off, but did not because I knew her good intent and where she was coming from. One comment haunts me though..."It's incredible to me that with all of your struggles and personal miseries, that you are sitting here, here to help someone else." Using everything in me to conceal my shock and horror at her interpretation of my life and the comparison it seemed she was making, I replied, "Nothing I have gone through can even compare to what is happening here." (the pain and depth of Diana's situation)

I have been mulling over this on and off for six days. The idea that my disability bogs me down with struggles and misery, and so much so that it precludes me from caring for others, mystifies me. I've actually heard variations of this numerous times. On one hand it makes me chuckle, and on the other hand it really saddens me. I know some people that do blame all of their unhappiness on their disability, but if you ask me, I'd say more than likely, they'd be unhappy regardless of disability. Disability - especially aquired - takes time to adjust to. I know probably over 1,000 people who are DISABLED & PROUD, and that is where I fit in. Ninety-nine percent of the time, I do not even think about not walking or my speech impairment as a negative thing. What is the big deal?! Who the fetch cares?! Well, unfortunately society, I've learned, and everyone with a disability learns. It is that fact that angers me.

So today when my friend sent me a link to a Yahoo News article entitled “Americans would rather be dead than disabled”, I was not surprised. It’s a super sad phenomenon, if you ask me.

The funny thing is, people/society oppress me, my disability does not. We cannot, nor should we, eliminate disability. But it seems to me that as a society, we can and should change the way we think about it. Not merely the way we think about people with disabilities, but all people in all "groups" that we, as a culture, have stigmatized.