“Coping With the Fear” – Nancy

I had just poured myself a cup of coffee and settled in for the 2-hour Ultragenyx Study, feeling I might have something to offer having been in the CTD world for 20 years, when the second question knocked the wind out of me: What is your greatest fear for the future? It happens every time that question is asked of me. It seems that the fear for the future is always lying just beneath the surface like an alligator waiting to strike. I immediately lost my ability to speak and raised my index finger, asking for a moment to gather myself. I’m surprised by my sudden and intense emotional response to that question, and I’m embarrassed. The ladies interviewing me are gracious and give me the time I need. I just met them, but I feel that maybe they have kids, too. Maybe they understand. I take a deep breath and attempt to convey how I feel, how I worry that my son will be mistreated, neglected, or abused without my vigilance.  I worry who is going to wipe his butt when he, a grown man, uses the bathroom. Or who is going to cut his food small enough so he doesn’t choke. Who is going to draw him away from his puzzles or iPad long enough to interact with real people from time to time? I worry he won’t understand where I went when I’m gone and that he’ll think I left him on purpose. I worry he won’t feel loved.

I know I’m preaching to the choir here. I’ve talked with enough families to know we all have similar fears for the future. And I also know that few of us have found anything remotely comforting in what the future holds for our kiddos. Most of the time, I successfully avoid thinking about his future without me. It’s not that I’m not making plans, I am. I’m working my butt off to grow a farmstead community where he and others like him can be safe, cared for, and loved long after I’m gone. It keeps me busy so I don’t have to think about what it will actually be like for him when I am actually gone.

There are times I wake in the wee hours of the morning and the alligator rises to the surface. Silent tears stream down my face and I feel utterly helpless at that moment. It’s easy to fill my mind during the day but the night…oh, the night. Sometimes I feel as if I might be consumed by the darkness and the fear. I have a few coping strategies that I employ at times like this…meditation, counting breaths, picturing myself on a spiral staircase going down a step with each deep breath, praying. The most useful lately has been reading, and so I’ll sit up in bed and open the Kindle app on my phone, reading until the feeling passes and I’m sleepy again. Sometimes I’ll just give up, go downstairs, and make a pot of coffee.  

I’m curious…if you have fears for your child’s future, what coping strategies work for you?