I belong to this online group that is for parents of kiddos with PMG (polymicrogyria) which is part of Jackson’s condition. It’s a great group with members from all over the world and there are often a lot of interesting discussions. The most helpful thing is that it makes me realize that there are other parents out there going through some of the same stuff we are. But more often than not, these parents are going through even more than I can imagine. A lot of the kids with PMG have epilepsy because of the brain malformation. There is a lot of discussion in the group about monitoring units in their children’s bedrooms so they can hear if they are having a seizure. There are parents that sleep in their child’s room and/or bed so they will always be there. These parents often talk of how exhausted they are from the lack of sleep. Not only can’t they sleep comfortably but they are afraid to sleep because they fear their child may have a seizure in their sleep and die. A difficult glimpse into the extraordinary lives of parents of special needs kids.
A few weeks ago a woman posted that she had lost her child the night before. She was telling us to hold on to our children and be thankful for every day we have with them. Her child died from SUDEP, Sudden Unexplained Death in Epilepsy. It’s how John Travolta’s son died. They have an extremely intense seizure that kills them. I have to admit that since we discovered Jackson was having seizures in his sleep in October I have been more wary of every little sound he makes at night. Yesterday he slept until almost 11 a.m. and around 10:00 I turned the monitor up all the way so I could hear if he was breathing. When I don’t hear him for a few minutes my heart starts pounding and I start thinking he’s dead. Then a few minutes later I will hear him and I relax. It may be irrational, there may be nothing I can do about it, but it’s my biggest fear - Jackson has a seizure in his sleep, he dies and I find him the next morning. I don’t spend a lot of time dwelling on it, you just can’t. But it is always there in the back of my mind. While I’m terrified of him dying, I’m also scared that Kevin and I may have to take care of Jackson until the day we die, and I worry endlessly of who will take care of him after Kevin and I are old and gone.
There are so many things I think of these days that aren’t what I imagined I would worry about when I thought about becoming a parent. But I suppose that is what being a parent is about, the unexpected joys, surprises, and worries.