Posts Tagged ‘kalydeco’

“What if I only live to be 35?”

 

 

Last month was a difficult one for my Colby, in school and at home. He acted out, he lied and lied and lied. He terrorized his brother and sister, he was destructive and manipulative. And all the while I was peddling just trying to figure out what was going on with him.

He was grounded for several weeks, he was warned of harsher times to come and still there seemed to be little improvement. He is resilient, hard-headed (no BULL-headed) and very stoic in his emotions. So very frustrating! And then I came to a heartbreaking realization….

My sweet, young, intelligent son is clearly perplexed with his future, or how much of one he really has.

At his last hospitalization in October, he randomly made the statement….”I’m not real sure that I want to go to college. I mean, it’s a hard decision.” Really, son? Why is that a hard decision? “Because I don’t want to waste time. What if I only live to be 35? I want a wife and kids.” Profound. Jaw drop. Tear. Heart. Breaking.

I flashed back to this conversation as I lectured him on his lying, his behavior towards his family and at school. And as I spoke to him about my job as a mother to train him into a good man, a successful adult; I wondered if this was, like in my mind, in the back of his.

I felt like such a failure as a mother! How could he think such things? We all have morbid thoughts and worries of how long we will be around for our family, but this poor little guy, at the age of 9, really has validity in his concerns. I have allowed him to hear too much, read too much, but have yet to explain to him that we all have uncertain futures. That no day is promised to any of us.

I decided to come from a different angle….

The following day, I pulled him aside and talked with him about all the wonderful things that are happening in the CF community. I pulled up blogs of mine, stories of other families and adults that are living with CF. I told him of people that live into their 40’s, 50’s and even 60’s with CF. I showed him the CF Foundation site and all the research that is being done to find a cure. And as grace would have it, at the time of this momentous conversation, was the same week that the FDA approved the first “fix” for some CF mutations (Kalydeco). I explained that while this particular medicine doesn’t directly affect him, there is another one out there that I have been watching since it was first publicized. A medicine, VX-809, that would “fix” what didn’t work in his body and he was the perfect candidate for it (homozygeous Delta F508).

His response? A huge smile lit up his face and he said “if they get that medicine, I am going to pass out.”

Over the years, I have done my best to show my son strength, tenacity, and normalcy in the face of adversity. But I have failed to show him, tell him about hope. The most profound idea, emotion and gift that we can be given. With sweat and tears, I have made all of his treatments and medical regimes non-negotiable and “normal” at the same time. It is just what we do. It’s not a big deal. Oh, but it is. And now, he understands how real it is. Mommy is good at lying, too. I play pretend far too well.

Since our discussion, he seems to [slowly] be understanding that there is a future and that he has one. He has been working harder at school. He has made more effort to help around the house and “do the right thing.” I can tell that his outlook has changed a bit and the Cub Scout phrase that he hears every week at his meetings, “Do your best”, has more weight for him. He still makes mistakes and still can carry an attitude. But that tenacious, bull-headed attitude and heart of steel is what God gave him in his fight. It’s what is going to carry him through this and make him a successful, strong and happy man one day.

He has said in recent months that he wants to be a nurse at Childrens’ Hospital because he wants to help kids like all the nurses that have been helping him. He wants to volunteer at Victory Junction Camp, even if he doesn’t get paid, so he can help other kids have fun like he did when he got to go.

All because of one little word….HOPE.