My sister stopped by on New Year’s Eve with homemade pretzels, a Snap Chat tutorial for her old lady sister and some passing comments about 2016, looking forward to 2017 being better.
I thought back over my year and whether I would sum it up as good or bad. Immediately I thought about my mom’s cancer treatments, the summer of Mark’s broken arm and his new intense fear of doctors, and the loss of the two children with SCN2a. Realities of my fears; potentially losing my mom, the increasing difficulty of parenting a child with special needs, and the ultimate fear of my son’s life being shortened. Because of it, I’ve acquired more gray hair, my worry lines have deepened and I’ve gained more of a seriousness to my demeanor.
As Mark was curled up in my desk chair watching slideshows of photos on my computer this afternoon I caught a glimpse of a picture from a few years ago that lives in the “before” category, a separate space that I’ve mentally designated to contain the memories of a time when I didn’t know what was coming, my life wasn’t turned upside down and I didn’t wake up in the middle of the night alert, mind racing, very aware of all that weighs on me. In this photo, I looked healthy and clearly less stressed, because I didn’t know then what I know now. The little boy I was holding was missing milestones and it wasn’t just because he was a boy, and boys develop at a slower pace. I often yearn to go back to a simpler time, when my worries were so much less significant; so much so that I can’t even remember what consumed my concern.
And now my fears are in layers and they come in waves. I lay awake at night researching schools on my phone, terrified that Mark will attend a school where he’s ostracized, secluded and rejected. I imagine having to sell the house we built as our forever home in pursuit of better education and services. I even imagine the possibility of homeschooling, something I never considered. I lose track of him for a moment in our house and my heart skips a literal beat as I entertain the possibility that he may have figured out how to open an exterior door. And on mornings where he sleeps later, I worry that I will find him seizing in his room. The failed attempts at learning, the loss of language, and dreadfully slow progress makes me take a deep breath that I wish would lighten the weight I feel but doesn’t. The heaviness of discouragement coupled with these fears leaves me feeling physically drained, emotionally tapped and on edge.
I constantly reevaluate, rethink, and criticize what I’m doing, and what I’m not doing. I think about Mark’s team of doctors, and whether I should I try a new one. Whether to seek out that quarterback that I’ve always wanted, someone to coordinate his care, to think about him as a whole person, rather than seeing his body systems in isolation, to help to reevaluate therapeutic approaches and diet, and for goodness sake, know something about SCN2A, and take the pressure off of me to unravel the tangles. I constantly second guess my choice to send him to a speech program that requires a three hour round trip four days per week. I wish for time to reorganize and renovate my basement to be the sensory play gym that I know he needs. I beat myself up over the time I don’t spend trialing new foods or not making everything from scratch, my lack of follow through with using his communication binder and the things I let slip through the cracks, like getting his new insurance card to the private therapy company in a timely manner.
2015 was the year of scrambling. I spent it reading every book on autism I could get my hands on, trying every therapy within the realm of possibility that looked remotely promising and talking to every parent I knew with a child on the spectrum, and at the end of the year, connecting with parents with children with his specific SCN2a mutation. I fought hard that year for his insurance, for his therapy and for a support network that could help us manage the chaos. 2016 was the year of seeing what I fought so hard for fall into place and anxiously awaiting the resulting progress. The year has concluded with the sobering reality that his diet, supplements, therapy and my efforts to move him forward aren’t producing the results that I had anticipated. He absolutely has made progress, but it’s hard to decipher what to attribute it to and it’s even more difficult to keep a faithful outlook when the progress he does make is gone quicker than it came.
So now in 2017 I find myself regrouping and taking stock of where we are, and digging deeper to see if I can work smarter and not harder. Despite feeling beat down by the never ending battles I know that Mark deserves the best, my best. He deserves a mom who will keep an eye on the ball, not give up on him, and fight with every fiber of my being for everything he needs to be safe and supported. And I will shoot for the moon, I will work hard to learn even more about SCN2A, I will work to double our profit at this year’s color run, and we will take one step closer to a cure. And so perhaps these are my resolutions for the new year.
This past year may have aged me a bit, but may I gain wisdom from the mistakes, rejoice in even the smallest of victories, and may the fears that exist in my world serve only to fuel my perseverance and determination. We may lose words, the milestones may never come, but I resolve to keep my chin up and my outlook bright, because just look at that face. His smile says it all, without the words.
Angie, you are one of the strongest women I know. You and my sister in law Sharon are totally awesome and have tackled more than any one person I can think of. You both have been blessed with the two totally terrific little boys. I love you and your family as if you were part of our own. Happy New Year, give everyone a hug from Cole’s Aunt Mary.