Not All Children Grow Up: Mothering a Child with Severe Illness

Since 1997, I have been faced with raising chronically ill children. More than once I’ve been in the situation where I’ve had a child in Pediatric Intensive Care, and been told that the child in question would likely not make it home again. But due to the great medical care given, and the fighting spirit of my kids, the grim prognosis has never come to be. I have had the loss of a twin pregnancy, and another single pregnancy. So, in a way, I have lost children, but I am not one of those who feel that losing a pregnancy is the same as losing a child that has actually been born alive, one that I have held in my arms and exchanged a loving gaze with. I know that some women will hate me for saying this, and that they feel the grief of a pregnancy loss profoundly. Perhaps I am deficient in some way. But to me, it’s just not the same. It felt more painful THEN. But now, it is as nothing compared with the idea that my son, who has been my source of joy for 12 years, that HE may be taken from me at such a young age.

He is sweet, shy, and unbelievably kind. His first concern is always for his little sister or someone else. He loves to eat and is happiest when we all watch a movie together with pizza ordered and homemade dessert served after. He loves comedies, and the sound of his laugh is contagious. His hair curls in tight ringlets that no woman can fail to tell him how gorgeous they are, which makes him blush and roll his eyes—he, of course, hates his curls. Over the past four years his muscle weakness has caused him to need his power wheelchair for distances, and has made his joints ache, even when he is not moving.

The heart is the body’s biggest muscle. It is the one that, as it weakens, is killing him.

He has been accepted into a cardiac rehab program, the first child to take part, and the first person to have not (yet) suffered a heart attack. It is the only exercise he can do. It is only safe for him to exercise there, where he can be supervised, hooked up to EKG leads, blood pressure cuffs, etc…and where, if need be, there is a staff with a crash cart, ready and able to revive him. They will do all they can to make it fun for him, but a 12 year old boy is supposed to be playing, not getting his “play” time with a bunch of grandparents, hooked up like this.

Still, our family has long believed that laughter IS the best medicine. I may suffer insomnia from stress, but I try to find ways to laugh every day, and I share that with Danny. He reads “The Onion” for a news source, and the beauty of unschooling him is that he can research American History by writing humorous reports on the errors reported in traditional textbooks. He can take out his anger however he needs to, and I will back him up on it, as long as he uses his brilliance in ways of academic energy.

But no matter how I busy myself with the hundreds of things that call for my attention, his quick deterioration is before me, and I loathe it. I feel a closeness to all the other parents I know are out there suffering in the same way, even if I don’t intentionally seek them out. What can we really say that makes it any better?


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