One week from today, it will have been one year since we learned of Noah’s diagnosis.
For me, this is where a new year begins.
365 (- one week) days ago, our lives changed.
Not a day has passed that I haven’t been reminded of Angelman Syndrome being our reality.
Our reality is one that I couldn’t have imagined one year ago. We have experienced incredible moments of sheer, unearthly joy. We have shared deep, harrowing realities.
Most days I am awakened by Noah’s elbows digging into my body as he attempts to roll over and lay his head on top of mine… Then instantly, he’s up and ready to start his day… Next we hear little pitter-patter steps as he makes his way down our long hall to the front room where he awaits his ipad (eye patch time for the next three hours). One year ago, I didn’t allow myself to imagine when Noah would walk. I wouldn’t allow myself to imagine him signing for his ipad, or opening the fridge and helping himself to his morning milk at three years old. I haven’t allowed myself to imagine very many milestones, which has made the reality of these experiences that much richer each and every morning.
Angelman Syndrome is out of my control. I have a tendency to get uncomfortable in situations that I lack control. God planned this quite well, I’d say.
This past year has offered more growth and knowledge than I experienced in my four years in college combined. I have developed a much wider base of knowledge about neurological disorders, school systems, how to nutritionally feed and treat disruptive behaviors, and how it helps to have your hand in as many pots as possible at all times. I’ve also learned that I lack the ability to be enough. I can’t do this on my own. I am almost completely dependent on the people God has placed in our lives to guide and direction and assist us as we figure all of this out.
For the last third of this past year I began to feel exhausted, worn out with routines, formalities, paper work, phone calls, and my inability to do everything for my child. I became frustrated with myself for my imperfections, not being like the other super-star special needs moms who have it all together. You mean, I’m supposed to have picture cards on a lanyard attached to my own belt loop to show my child the difference between cheddar cheese and string cheese at the grocery store?! Control and self-dissatisfaction are two things that drove my eating disorder in my teens and early twenties. It was an endless cycle, because the more control you actually have, the less satisfied you find yourself. My perceived control only made me crave more of what was always just.out.of.reach.
This week, I had a rude awakening. I was politely informed that I am searching for control so hard, that I’ve lost sight of my goals, my job. I’ve neglected my own health and well-being in hopes of attaining some semblance of control over my life, over Noah’s life, over my family’s life.
I’m telling you this because, I believe that honesty is what breeds honesty. It is what draws people together and makes life and conversations more meaningful. It’s easy in life to put on a front, to smile, to say “life is good”… And while our lives are indeed deeply satisfying and rewarding, I am also a bit challenged with my own coping skills and keeping up with the fast pace of life.
The journey that God placed me on is intentional. He knows my weaknesses and has given me a situation that if used correctly, will complement those challenges. As I look towards the next year, I intend to allow myself to imagine experiences that may seem outlandish or unlikely because frankly, this year, I have been in awe of the hurdles Noah has overcome despite AS. I will attempt to allow myself the time to rest, to nourish my body, to regain the strength that I need to do the job God has given me, however hard it may be because without that health, I am useless.
As I lay here beside Noah, watching his chest rhythmically rise and fall, his breath slow and steady, his little belly peeking out of his Mickey Mouse PJ’s, I can’t complain about the hardships of life. Despite the challenges we face on a daily basis, whether real or perceived, our lives truly are beautiful. I’m thankful that I have this little soul to raise, and to motivate me to life a full life. I am thankful for rude awakenings, regardless of the tears shed in the process.
God has placed us all in situations where His glory can be made known. It’s our job to bring glory through those circumstances, no matter how weak or bad our coping skills may be.
This is my challenge to myself and us all, friends.