Start early to transition kids from pediatric to adult care

This transition from pediatric to adult care sounds overwhelming, when all of a sudden your kid is like, you know, 15.

“Oh my gosh, it’s going to be in three years they go to the adult clinic.”

But to me, it’s like you start, if you’re, if you can, you start to prepare them early.

Early from mixing to finally pushing the syringe when they have the needle in, and little things like that. And then even talking about, “We order factor, this is who I call.” And so those are the things, I think, that help us when we work toward transitioning. It’s just never too early to prepare.

I think a couple of the biggest challenges that come with transitioning our kids from pediatric to adult care, there’s, you know, there’s a couple that come to mind for me. And one of them is a little controversial, but is watching them fail.

I don’t want my kids to fail. I want them to be OK, and I don’t want them to have any heartache. But this is life, and so things are going to happen.

When Julian was a late teen and he was doing all of his orders for factor, I always had an idea of when he ordered or not. And I noticed that the supply was a little low, and I didn’t say anything because it’s not my responsibility anymore.

Well, then lo and behold, what happens at Friday at 5:00? He starts to have a bleed in his toes, in his little digits, because it was always weird bleeds that Julian would get. And I told him, I said, “Well, why don’t you go infuse?”

“Well, I don’t have — I don’t have any, any factor.”

I’m like, “What do you mean you don’t have any factor?” Because I knew. I saw. I could have told him the day before, “You need to go get your factor. The weekend is coming. You need to call.”

But fortunately, it wasn’t a big bleed. I mean, and it could have been. But I knew that he had to go through that, going, “Oh my gosh, I can’t just call and get it in here tomorrow. Everything’s closed.”

And so he had to go through that experience, and I had to watch. Oh, and I was just beating myself up. You know, “What if this would have been a big bleed?” But I couldn’t go there because in my mind, I knew that if there was a tremendous emergency, we would go to the emergency room.

But still, it was about watching him with that realization: “Holy cow, I didn’t do what I needed to, and now I’m stuck.”

So to me, that is a very big lesson, and some people will not maybe take it that far. I understand. But, you know, we learn from our mistakes.

The other aspect of raising kids with a chronic illness, a rare disorder, is the mental and emotional piece of all of this, which is — it’s hard. It is so hard to raise kids and talk to them about something that is so serious in their bodies, and what they go through about being angry. And, “I hate hemophilia,” and all of that.

That starts at such a young age. But being able to let them talk about how they feel, “Mom, I’m sick of this. I just want to live my life. I want to go to college. I don’t want to have to worry about these things.”

But again, it’s been the openness. “Let’s talk about this. And even if you don’t want to, I’m here, honey. I’m here for you. I’m sorry that you’re going through this.”

And so the other suggestion I have is that it’s OK to say, “Hey, son, do you want to see a counselor? Do you want to have someone else to talk to?”

And so he has seen through his struggles — that have been a little more tremendous than most, with hemophilia and inhibitors — that that is an important part of his health. And I have seen him grow as a young man, as he has really taken charge of that for himself.

This transition, and seeing my kids become good humans in the world, seeing them take ownership of their bleeding disorder, watching my oldest son pay his own bills — things, things that we hope and pray for — that our kids are successful and they can take care of themselves, is something that just makes me so proud, so happy.

And I have this huge sense of relief.