Learning to Let Go…Transitioning from the Pediatric to Adult World

When you become a parent you know that your kids will grow up, move out and get lives of their own. When you become a parent of a chronically ill child this scenario is wildly different and so much scarier.


My son, Chase, was diagnosed at the age of 7 with chronic kidney disease known as FSGS (Focal segmental glomerulosclerosis). From the moment that diagnosis came through I went into full-on crazy mom mode. It took me less than 3 minutes to get on my computer and learn every single thing I could about FSGS, lab tests and results, medications…basically anything that I could do to know what he was going through since I couldn’t take it away from him. I made it my life about handling things for him so he could just be a kid. Need medications? I will get them. Fill the pill box? I will do it. Track water intake? I’ve got it. Schedule doctors’ appointments? No problem. All of these are things that parents are supposed to do. It’s our oath, as a mom or dad, to take care of the “big people” stuff so our kids can concentrate on friends, bike rides, sports and yes, even video games. But eventually we need to learn to let go.


Fast forward almost 10 years and Chase is quickly approaching his 17th birthday. SEVENTEEN!! How? Where did time go? About a year ago Chase’s doctor told me that it was time to start putting Chase on a track to independence. He would have to know about things like his medication list, what his disease is and how he got it, about health insurance and on and on. She was going to start talking to him (alone) about the effects that alcohol will have on his anti-rejection meds and about the fact that he’s more susceptible to things like cancers and so risky behavior for a “normal” teenager is even riskier for him. Now don’t get me wrong, I think all kids should know these things, obviously, but to have it be a topic of discussion because it’s a risk to his life just plain sucks. It’s not fair. Regardless of fairness, I know I need to start learning to let go.


I don’t always trust people, especially with Chase. His doctors and nurses could tell you stories about me contacting them freaking out about the fact that Chase seems too tired or has a bump on his finger. I could easily just contact his primary care physician, if he had one, but I trust no one but HIS doctors and nurses. The mere idea of them not being a phone call or email away from ME is terrifying, but a fast approaching reality that I have to accept. But I’m learning to let go.

Chase is now responsible for his meds…filling his pill box, knowing what he needs refills of, knowing what his meds are, how much he takes and why he takes them. He sees the doctor alone before I go in, and he’s now getting appointment reminders in the mail instead of them coming to me. I’m learning to let go.

I know that over the next year I will play less and less of a role in his medical world. While I am so scared of not having the control over all things medical for him, I know that his doctors and nurses won’t let him move on until they know he’s ready and they will work with us to make sure it’s a smooth transition. It doesn’t make it easier, and quite frankly I’m a little angry that this is even something we have to deal with because at the end of the day he’s a KID and kids shouldn’t have to worry about these things. He should be worrying about prom dates, colleges and his first real job. It’s not fair, but as time goes on, I’m learning to let go.