October 14, 2011. Such an innocuous day, not anything really jumps out to make it memorable. I promise it will be a day I will never forget and I marked its one year anniversary in 2012 looking back on how far my little family had come.
After I hung up with Will's neurologist that dreary evening I experienced this strange sort of high. Ha! I knew it, in my heart, I knew he had Angelman Syndrome. I called everyone close to us to tell them the news and I heard everyone's heart hit the ground. Everyone, that is, except me. At that point all I could think was, ok, Angelman Syndrome isn't the dream situation but I had an answer and something I could treat and, best of all, Angelman Syndrome itself wasn't fatal. While my research at this point was fairly high level, that part I knew by heart. We were starting down the path of mitochondrial diseases after his first AS test came back negative, so this was a path I was ok with.
I continued to ride this strange ride throughout the entire evening. I talked to many, tried to come up with an action plan, next steps, etc. I am a planner if nothing else. As long as I can preoccupy my mind, the painful thoughts stay at bay. The key is to KEEP the mind preoccupied.
We went through our evening routine and Will and Gabbie fell asleep about the same time and I held Will extra close, extra long that night. I watched his beautiful little face as he dreamed. Counted fingers, toes. My perfect little boy. As he smiled in his sweet angel dream state, my heart cracked. Perfect, yes, in his God given way he was. I am not an overly religious person but God and I definitely did our rounds since my first medical emergency at 18 weeks pregnant and I had no idea the row we would have that night.
I laid Will in bed, walked Gabbie to bed, muted the TV and sat in its glow absorbing the deafening silence. It didn't last long as my brain kicked into overdrive. Time to learn. Knowledge is power, it is a plan of attack, it is a readiness for whatever may come your way. No matter how bad it was, I needed to know. I launched the internet, navigated to Google and away I went. I came across the Angelman Syndrome Foundation first where I learned there were 3 types of AS and each of those was considered a spectrum. At this point I still had no idea what form Will had. I had much to learn in the coming days, weeks, months. I made a mental note of that - must find out genotype. Then I found FAST - the Foundation for Angelman Syndrome Therapeutics. And then the not so fun stuff about AS. The seizures, the accidents, the lack of speech, potential lack of mobility. The videos of those beautiful, beautiful sweet kids - all with AS like my Will. My Will. Has AS. As the first tear dropped onto my laptop, I felt the flood gates open. Every tear I wanted to cry but couldn't for over two years came out that night. I begged God to make it better, to take it away, to give it to me. Let this beautiful boy live a life full of adventure and words and songs - let this all be a bad dream.
I realized this pain wasn't going to go away quickly, nor would the tears. A song that always resonated with me and was potentially some foreshadowing into the path my life was on is "He's My Son" by Mark Schultz and it played on a steady repeat that night. I still can't make it through that song without blubbering.
"Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God what he needs right now is you"
Ahh the tears sting my eyes just typing the words. I went and got my boy out of bed and curled up on the couch. In all its unfairness and sadness one thing was beyond clear holding him that night - I WILL be strong and see him through.
He was given to me for reasons I won't even pretend to understand. As long as I walk this Earth and have breath I will be his voice, I will fight the fight, I will bring awareness and advocate for all the angels I would come to know and their mothers, fathers, siblings, grandparents, friends. And oh the AS community - that is a post in and of itself for it is an extended family and an experience I am truly honored to be part of. That weekend after diagnosis my Facebook page grew by literally hundreds of angel families, loved ones around the globe who knew exactly where I was. The pain my heart harbored, the fracture that would never heal completely. I remember having to walk away from Facebook because the requests and the messages truly didn't stop for two days straight. Who knew Facebook would become the lifeline it truly is for me in so many ways.
The baby sea turtle hatches on the beach and begin his trek to the safety of the ocean. A distance not very big to you or I but a vast expanse to that little sea turtle. Along the way there is threat upon threat - to lose their direction and not make it, to become a snack to a predator. Many will laugh but Will is my sweet baby sea turtle and I can't even see a sea turtle without thinking about Will and vice versa. His rough, rough start in life, his never ending brevity and strength when I myself didn't think I could take one more hospital stay or test and eyes that can touch deep in your soul, to places you never knew existed with just one look.
Around my neck is a beautiful baby sea turtle charm, he is coming out of his shell. This was a surprise gift to me by someone who will always be near and dear to my heart and I haven't taken it off since. It rests next to my heart which belongs to my sweet boy with the big sea turtle eyes.