People find it hard to believe that Michaela was a normal, healthy child before the seizures started. But it's true: up until the age of 3, Michaela was an above average toddler. She had an abnormal propensity for music and art, and was very bright.
Aug 26, 2013 1:05am
Today is Michaela's 16th birthday!
It's hard to believe that she could be so old. There have been many times when we never thought we would see her celebrate this milestone, but it's actually here!
We didn't get to celebrate her birthday yet, however. Michaela has this thing where she associates the term "birthday" with the word "party," and therefore, if there's no party (ie: cake and balloons....gotta have the balloons!), then she gets very distraught and confused. For the majority of her life, we've had to keep mum on her actual birthday in order to not upset her since we were celebrating on another date. Poor child has had her birthday as late as December, simply because we couldn't pull off a Michaela-approved "birthday" until that time. BUT, as long as we don't say the word before hand, she never knows the difference, and happily enjoys her birthday celebration whenever we are able to get it together.
The same will go for this year. I don't know what it is about August 25th, but it seemingly is a very difficult time for me to get something set up for her. She's had many birthday parties in September, simply due to convenience. Good thing she doesn't know August 25th from Sept 7th, Oct 19th, or Dec 23rd ;)
Birthday's have always been a weak area for me, so I'm glad she doesn't know the difference.
But ohhhhh....we plan to have a wonderful celebration for her this year! I've had a lot of different ideas knocking around for awhile, but the BEST idea came up sometime in July...
July 2012, I was at our local mito meeting, when my friend Leslie was talking about these bikes designed especially for special needs kids who couldn't normally ride one. My interest was peaked because Michaela has ALWAYS wanted to ride a bike, and never has been able to do so. It's not a balance issue, because we tried to teach her when she was 3, and the bike had training wheels. It was the strength needed to propel the bike. And then it became a cognizance issue as well. She wouldn't have the presence of mind to know when to steer or to avoid obstacles and other things...like trees.
No, a bike just wasn't going to happen for Michaela. And really, she seemed to be ok with that. It's not like we were flaunting them in front of her...
...until the other kids were riding them. That's when it became obvious that she had real desires just like other little kids, even when she couldn't articulate those wants. We would find her trying to sit on the other kids' bikes at random times...willing the thing to move before it would fall over. And then there was the time she discovered their power wheels, crammed herself into it (she was much too old or big at the time), and took herself for a ride. Around and around in circles she went until the battery died.
The joy on her face was immense. And infectious. I took video of her after she had drained the battery, and I'll never forget the way her eyes danced, and how she came alive for that short 10 minutes. It was at that point that I started searching for a bike for her--one that would suit her personalized needs.
But a bike like that is just not something found easily. Nor is it something generally affordable. Very few companies make anything remotely usable by an adult sized "child," and if they did, the cost was waaaaay out of our budget range.
Yet a bike was so important to her, that we seriously considered asking the Make A Wish foundation if they would give her one for her wish. The reason we decided against it at the time, came down to two factors: 1) as expensive as a special bike would be, it wasn't AS expensive as an all-inclusive trip to Walt Disney World for our entire family, and we figured she would enjoy that as much. And 2) we didn't live somewhere suitable for her to ride it. We owned a little farmhouse with a dirt/gravel driveway on a fast-travelled road. There was no place she could've ridden the bike at that point, even if we owned it.
So, the bike never happened for MAW, but it hasn't been far from our minds. Especially when Leslie was talking about her daughter's special bike that July last year. And coincidentally, the day she was talking about it, the organization that fit her daughter for one, was having an exhibition later that afternoon.
So we went down a checked it out. Picked up a application packet. And saw a bunch of candy-apple red bikes ready to be loved by a child just like Michaela.
We didn't get the application filled out and submitted until November of last year. Yet, once that happened, it's been a long waiting game to see if her application would be picked up and accepted.
Which brings us to this past July 2013.
I finally heard from the organization that Michaela could come and get fitted for a bike in the middle of August. Finally! After what seemed like years of searching and searching for a bike for her, we finally were going to get one JUST FOR HER.
And to top it all off, we had just recently moved to a home with a paved driveway that abuts a slow side street. Perfect place for a girl to ride!
And you should've seen her getting fitted. It was just like that time on the power wheels. She giggled with delight, anxiously pedaling wherever the physical therapist would let her. It amazed me that she had the strength and ability to not only propel the heavy trike-style bike, but she could also maneuver it around the tables and chairs in the large room where the fitting took place. But these bikes are just so well adapted to the needs of these kids, that the demo bikes she tried were a cinch for her to manage--which is exactly what the joy of riding is all about.
After a lollipop and some coaxing, we left the bike area to fill out sizing charts and helmet needs and ordering forms. It felt like the bike dream was about in our sights.
But only if it were just that easy! Like I mentioned, this kind of equipment is very costly, and only a couple of manufacturers exist. I want to say the woman said this was the only American bike manufacturer left. Just the engineering to make sure each bike is specifically tailored to each child, takes a lot of time and money. And when you don’t sell 1,000 bikes a day...like Schwinn or Huffy...the financial burden gets heavier.
So the physical therapist explained to me that they work hard to write grants that will help them take some of the financial burden off of the families that need these bikes. (And here’s the thing: does she “need” a bike? No. Of course she doesn’t. No child “needs” a bike. But the fact remains: bike riding is a golden experience of childhood, and is an excellent past time for any, and EVERY, child. The freedom of movement, and the feeling of the wind whizzing past your ears when riding a bike is exhilarating. No child should be denied that, and you’d be hard-pressed to find an adult who doesn’t have fond memories of bike riding. I know I sure do!) In their program, they also rely on the families to work out their own fundraisers within their own communities to help raise funds. Once all the necessary components of the bike are funded, the organization purchases the bike, puts it together, and adjusts it to the specific rider.
So that’s the stage we’re at: the fundraising part. But it just so happens that all this excitement falls around this very special milestone for Michaela: her 16th birthday. What better time to give her a gift she can “drive,” than for THIS birthday THIS year! Sweet 16 is the birthday that many parents like to gift something a little extra special for their children, and we couldn’t think of anything more wanted or loved than her very first bike. I get choked up thinking about the timing, especially seeing as how she’s been doing so well in so many areas. Areas we never thought would function again.
Not only can she actually USE a bike, but she can positively ENJOY a bike. It wasn’t that long ago that I never would have dreamed that to be possible.
Which means that THIS year, for her birthday, we have an account set up by the organization in order to receive birthday gifts for Michaela. I have a few small trinket things to give her that I’ve picked up over the past year, but her BIG gift, is the bike. We don’t plan to have the party until the bike is funded and can be given to her, but you’re all invited! In the meantime, if you could see yourself coming to her Sweet 16 Birthday Party, and you would generally bring her a gift, would you forego a physical gift in exchange for going in for the bike? It doesn’t matter what you can or can’t add to the pool---just know that you’re giving her something she will love. And it’s simply not the kind of thing we could purchase for her on our own, but we know if we all pooled together, we could make her dream come true. Just like most people couldn’t buy a bride her pots and pans, or a new mother the crib, by themselves--so it is with the bike. No one or two people could afford such a costly piece of equipment alone, but together, with a bunch of people putting something towards a birthday gift, it can be done!
I’ll hopefully be sending invitations out this week, but we won’t know the date or time until we know we have enough to give her the bike. So if you want to come to her party, or if you would just like to give her a little something for her birthday, please use the link below to see the bike and buy a “ticket” that goes directly toward the purchase of it. If you’ve already pooled in, thank you! I hope you can come to the party when the date is set! We will be sure that everybody’s name is on the card, and she will be giving out her typical thank you hugs :)
Until then, HAPPY BIRTHDAY to my sweet sweet girl! I love you more than 16 years could ever hold! I can’t wait to spend the next 16 with you!
(Please disregard the date of the event on the link. That's a technicality that has nothing to do with when her party will be. It's just a goal date for the organization to try to get all the funding in. If you decide to get her a birthday gift by adding to the bike, register with the organization (easy) "for the event", then choose your gift amount. I believe your gift will be called a "ticket", but it means nothing more than you donated. And if you do, THANK YOU! I will try to post a video of her when the bike comes in!)
Guestbook signed 0 times today
We cherish your messages. Take a moment to write a note in our guestbook or read entries from other visitors.
Michaela's CaringBridge site is made possible through donations. You can make a donation to CaringBridge.