Feeling it. It being that painful, deep in the gut feeling that parents of special needs children get when we lose another child from our support groups. You know it’s possible, you know it will come at some point, you wish to heck it will not be YOUR TURN. You are brought to your knees, realizing yet again that there is a chance that your family will have to experience this kind of pain.
Not wanting to go there, to touch it, to sit in that place where you realize that you should make plans, should think about the inevitable- we all die sometime. We have been to that dark place to visit a number of times with Sophie when she was younger. I don’t think I will ever really be ready, no matter how much planning is done, no matter how much time you think you have, no matter that that clock is going to stop when it’s going to stop no matter what you do to prevent it. In one week a friend from one of my support groups loses their child, another family is fighting the good fight at the hospital, another is doing it from home. And it hits me each time, “this could be us.”
We keep a file on what we think would be good for a memorial for Sophie. Started it many years ago…and haven’t touched it in years since Sophie’s health has stabilized. At least it’s stabilized today. One small event could cascade into that world of life-threatening circumstances. It’s always sitting there, just over your shoulder. Most days you can ignore it. But when a friend has to say goodbye to their child, that “elephant in the corner” taps you on the shoulder.
My husband worries that my life has been defined by the all-encompassing, passionate and driven way I care for our medically fragile daughter. Years and years and years. I know that we have been blessed with more years than some of the other parents, and much longer than any of the professionals expected. He worries that I won’t know what I will do with myself when Sophie earns her wings. I left that other life so long ago that both he and I don’t think I could pick up that life, nor do I want to be that person. I’ve changed. A lot. Both physically and mentally. I am stronger and weaker. More vulnerable and more resilient. I am fairly certain I will still champion the issues that need to be resolved for special needs and medically fragile people. I am very certain my friends with these kids will keep me grounded and not let me go.
Death is an unwelcome companion, one that has been visiting me on and off for many years. While living in the special needs community it is inevitable that you are faced with the imperfections of death, the ugly sides of dying. I find lessons in each sweet life. Remembrances of a life, sometimes cut short, most times well lived no matter how long in years. At my age I find this unwelcome visitor on both ends of the dashes, some short, some long. It is never an easy goodbye for me.
As I let go of yet another young man, who I only knew in his toddler years, but grew to be a young adult with seemingly a life full, the companion pays a visit to my friends, his parents, that we knew best at the age that this young man was living.
I’ve held on to this entry for a time. Wondering when it will feel right to give it wings. It is a difficult but necessary need in me to write about, to confront. As one more young life is gone, now is the time. As H’s parents are, I am forever changed.