I awake to a familiar screech. “Mommmmmyyyy……HELP!” So begins my biweekly sleep-run to my 11-year-old’s bedside. “Mommmmmyyyy……I want to cut it off, I can’t stand it anymore…I hate my leg….make it stop,” he hollers, eyes wide open yet not quite awake. My 14-year-old son appears at the door, sleepy-eyed yet familiar with the routine. He helps bring his brother to the bathroom and wash his face until the terror subsides. “Mommy, can I please get a pill?” I give him a couple of Advil on top of the bedtime Tylenol, a cup of water, and I hope for some peace.
As a mother of four kids, aged 6 to 15, I am certainly used to making lots of decisions. As all mothers throughout the world, from the time that they were babies until today, I’ve made thousands, perhaps millions, of decisions. I decided how and what to feed them, which schools to send them to, where we will live, what extracurricular activities they will participate in, what time they need to be home, whether they can stay out late on school nights, on weekends, and countless more such everyday issues. Some decisions were easy, others more challenging, but all were quite ordinary.
When my third son was born in 2002 with a rare orthopedic condition whereby his right leg was chock-full of pathological fractures that don’t heal, my decision-making turned up a notch. Granted, it was not a matter of life and death, but I entered the unchartered territory of disability, uncertainty, and medical science as well as the psychological and behavioral ramifications of this conglomeration.
There were decisions to be made about doctors, limb salvaging procedures, psychological support, school support, types of orthotics devices and walking aids, and of course navigating the bureaucracy that was set up to help and/or protect people with disabilities.
But now, we are faced with an extraordinary decision–11.5 years into the “leg story” and it’s broken again. In the case of my son’s disease, there seems to be a philosophical divide between surgeons who advocate for limb salvaging and those who recommend amputation and a prosthetic. The first surgeon who saw my baby at the ripe old age of one day recommended amputation. Shocked and new to this world, we grabbed our bundle and ran away. The second surgeon was with us for a decade. We tried surgery with internal rods, then an inquisition-like procedure called external fixation–or in plain language, rods, nuts, and bolts through the bone, muscle, and skin. Results lasted for about a year and then, it fractured again, slowly expanding until my sixth grader can no longer bear weight and is back on crutches and is in frequent, if not constant, pain.
Now, it’s decision time. Amit has had enough. He wants a life without limitations. He wants to run, to climb, to jump, and to hike. Most of all, he wants to play soccer. With a prosthetic, possibilities are great. We met a 12-year-old girl with a prosthetic who plays competitive soccer. He is inspired. He says he is ready. He wants to “cut off his leg.”
But there are the “maybe, maybe, maybes”–maybe, if we would try again, it would work, maybe this time…I don’t know…maybe not… After 15 years of parental decision-making, this one has got me good.
For months, I vacillated between succumbing to his wish and amputating (hoping that it will indeed solve the problem) and encouraging him to try limb salvaging yet again, sacrificing two years of his life for the very uncertain potential of a functional yet fragile limb.
Now the die is cast, and his amputation surgery is scheduled for early April. This decision was not entirely mine–it was ours. Amit has chosen this route and his father and I, along with our family and friends, will be there with him.
Amit is the bravest kid I know. Please follow his blog: www.tagamit.com