Saturday, August 20, 2011

Saturday Surprise

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

Thursday, August 18, 2011

Desty's First Day!

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

Sunday, August 14, 2011

Big Decisions, Only A Mother Can Make

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

Saturday, August 6, 2011


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

Wednesday, August 3, 2011

To New Heights!

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