Ever since Nicky graduated from High School, one of these questions seems to be on everyone’s lips:
“What is Nicky doing now?”, “What are his plans?”, “Is he going to College?” or a variation of these.
The truth is… I don’t know.
As a parent of a child who is medically fragile (to say the least), I don’t know what my son’s plan is, or what he will do. He would like to do things, but on most days it’s a challenge just to drag through another painful day without trying too hard to think about the future. Planning for something like College seems impossible when I don’t know if he’ll even make it to next week. I can only wish and hope I can find a way to help him through this day and deal with the constant barrage of pokes and needles, bandages and medications. I hope the clinical trials are the right choice and can provide some relief. I can hope that some treatment can come around to make his dreams come true, as he has told me a number of times that if he felt good, he would love to go to culinary school… but as things stand, that’s completely out of the question.
Parents that live in this “medically fragile” bubble have to take life differently. Most days, it’s by the hour. The things I worry about with my healthy son, such as “I hope he can adjust well in middle school”, or “I hope he gets a good grade on the math test”, are just not my priorities with Nicky. My priorities with him are vastly different. I concentrate in keeping him as healthy and as comfortable as possible. With Connor I urge him to go play outside, be active and social, with Nicky I am just happy if he has “online” friends that can take his mind off his pain. Planning things too far in advance is impossible. I just can’t go “there”.
If I do make plans, they are in the immediate future. I do plan, for example, to take the boys to Italy to see my parents this summer. Amazing organizations, caring individuals and non-profits have made it possible for Nicky to have fun days and make memories in the past. Over the years we have received amazing pillows, blankets and care packages, toys and stuffed animals to let him know he’s cared for. They don’t take away the daily struggles, but they help ease the emotional pain and put a smile on Nicky’s face, which is priceless.
“Success” is a word measured differently with kids like Nicky. I consider a “great” and “successful” day, when we’ve gotten through a day without choking, vomiting or screaming in pain, or when we can spend a few moments laughing. Sure, I may be a bit overprotective, I may do too much for him or shelter him too much. But every day is such a chore to get through at times that I will do anything to make him happy.
At the end of the day, I live moment by moment. I choose to be present-oriented and let the future take care of itself. I can only hope it won’t break my heart too much, and while I have fully accepted the fact that there are so many scholarly and other achievements my son will never reach, I find peace knowing Nicky touches lives in his own unique way. Inspiration itself is a great achievement.
Love & Light,
