5 Years Later

I woke up this morning like it was any other day. Having my coffee, making out the grocery list, watching Amelia and Arianna play. I hear the date on the television, suddenly I remembered. As if I could really forget, that moment when I was all alone in my cell of an office listening to the doctor on the other line "Mrs. Manning, you had a feeling this was going to be the outcome, Arianna does have Angelman Syndrome." She was right, she fit the phenotype: the smile, the delay, the smile...

I thanked the doctor for calling me right away and hung up the phone. I never felt so alone in my entire life. I sat behind the door of my office crouched on the floor and sobbed. Taking a selfish moment for myself to grieve the loss of my child. All my dreams for her were lost in that moment.

I drove the hour home, alone, paying little attention to the road through my tears. Somehow I made it back to Arianna's daycare. I opened the door to her room to see her crawl up to me, I picked her up as she smiled with delight as if to say "mommy, it's still me, I'm the same little girl that you dropped off this morning..."

I had to learn this lesson as a parent at some point. Most parents don't learn it until their children are full grown. Our dreams for our children are just that, OUR DREAMS. They will have dreams of their own that we can not create for them. We can only support them and help them make the best choices THEY can.

The diagnosis of Angelman Syndrome will last her entire life. The doctors reminded us that she may not walk or talk, will have seizures, and will be profoundly retarded. I HATE that word. The word retarded carries the worst connotations with it, regardless of the etiology. The doctors couldn't tell us much else (or at least not anything I didn't already know from my own research). What they didn't discuss with us was the severe sleep disorder.

Over the next five years, Arianna progressed thanks to the efforts of her family, friends, therapists, and teachers. She fought like hell to make her body do the things she wanted it to, along with fighting with us about how to do it. She learned to walk. She is now learning to run, jump, and ride a bike.

Just this week she waved to me for the first time as she sat on the bus, and we received reports from school that she has said Mom several times.

These little blessings are major accomplishments for her, things other parents and children take for granted. I cherish them. I cherish her perfect sense of complete joy and love. I am thankful for the lessons she teaches me about patience and forgiveness. She has shown me that I can be stronger, work harder, and love deeper than I ever thought possible.

Arianna can heal the deepest wounds with her smile and laugh.

It breaks my heart to see her struggle to tell me what she is trying to say. She has so many thoughts running through her brain that can't get out and the frustration that builds inside her could fuel a jet airliner. She doesn't give up, she keeps trying until she finds a way to get her point across.

My new dreams for Arianna have been formed by her. My dream is that she will struggle less with communicating, forge friendships that are meaningful, and create her own path without being forced into one because of an ignorant label. I dream that she will be seizure free and healthy.

In September I will run a full marathon in honor of Arianna. My goal is to raise $5000 for Angelman Syndrome Research, $1K for every year since her diagnosis. 26.2 miles is a great distance, especially while finishing Nursing school. It will be one of the greatest challenges of my life. It will be hard. It will never be as hard as it is to go through your life without being able to say where your pain is or why you can't get to sleep, or to say "I love you". It will never be as hard as experiencing the helplessness of seizures and respiratory distress. It will never be as hard as being called retard.

So I ask for your support as I add this path to our journey. Arianna grew through small accomplishments. We can reach this goal through small donations. $1 is enough. If you can contribute more, great. Words of encouragement or even being there in person on September 18, 2011 in Rochester NY would be very welcome!

You can donate via the widget on this page or go to:
http://www.firstgiving.com/fundraiser/stephanie-manning/ariannasawesomeadventure