The Adventure Continues

Arianna started her blog on Friendster before the invasion of Facebook. We have since stopped her blog (which is still archived there and can be seen via her website www.ariannasawesomeadventure.org)

Today's is from Stephanie, Arianna's mom:

2011 brings a lot of new challenges to our home. It is my first full year of core Nursing school, for which I am hoping to sit for the RN boards in June of 2012 and then continue to get my Doctorate of Nurse Practitioning in pediatrics. I am also going to run my first full marathon.

Both of these major goals in my life are fueled by Arianna. For those that have just joined our adventure, she was diagnosed almost five years ago with a rare genetic disorder called Angelman Syndrome. As a family we have to live with Arianna's diagnosis everyday. There is not a moment of our lives that is not affected by this disorder. It requires us to live a very different life than what we ever expected. There is the fear of seizures around every corner, many sleepless nights when Arianna just can not organize her little body to get to sleep. But I think the thing that hits home the hardest, at least right now, is that she is unable to speak and has a profound delay in her academics and development.

Arianna is the happiest little girl you will ever meet (maybe besides another little girl with Angelman Syndrome). She honestly can cure any bad mood with her smile and unconditional love. She has worked so hard to accomplish simple tasks like holding a spoon, drinking from a straw, walking, and putting an item in a box.

Some have asked me about her brain, does it just not work right? Well the best analogy I can give is one I'll borrow from a friend. Its like a car that has all the a parts but somehow the spark plugs are wired to the radiator and the radiator is hooked up to the fuel line. Arianna and others with Angelman Syndrome have everything in their brain to make it work, it is just that the lines are not connected right.

It is our hope that through research we WILL find a way to hotwire this car. Angelman Syndrome has been CURED in the mouse model. Granted mice are a lot different than humans, but with enough money this research CAN translate into AT THE VERY LEAST a therapeutic for our kids.

I decided to start running two years ago, as a challenge to myself. Every day for three years I asked Arianna to push herself beyond her limits. I pushed her to make herself condition her neurons to fire the synapses needed to jump those wires and help her crawl, stand, point, clap, and babble. Tireless hours of therapy, tears, and willpower. It was my turn to show her that Mommy could do this too. I was going to take on running, something I hated with a passion. 400 meters and I was beat, but I pushed on. Within 10 weeks I ran my first 5k. One year later I ran my first half marathon. Arianna's smile was at every step. When I crossed the line after my first 5k she was there, and my heart swelled with joy.

On Dec 4, 2010 I promised a close group of friends that I'd put my new found runner's high into full gear. I committed to finding a marathon to run. This time I was also putting a pricetag on it. 5 years since Arianna's diagnosis, $5000 to raise for Angelman Syndrome research. A small small price, financially and physically, to pay to make a difference in the life of my daughter.

Someday, I hope to be able to cross that finish line with her calling "Mommy". I would give every step I have ever taken to hear her say that one small word.

So I am blogging for now about my progress running, thoughts of Nursing school, life as a mom, wife, and advocate.