One of the most difficult parts about having Marfan syndrome or a related disorder is figuring out how to manage activity restrictions. Affected youth (and some adults!) see themselves as invincible. Parents may be inclined to place their children in a bubble for that reason, though some others opt to ignore doctors’ recommendations entirely. Neither is a healthy approach.

The Marfan Foundation has a handout on activity restrictions. It discusses the basics: non-competitive, non-isometric activities, keeping heart rate low, no collision sports. Serious weight-lifting isn’t advised, nor basketball, or football.

But what about all the activities that are somewhere in the middle? And what if your/your child’s aorta isn’t yet enlarged? Do you take the preventative approach and observe all activity restrictions, in the hopes of slowing down aortic enlargement? Or do you decide to let your child fully participate until they absolutely have to stop, even if that might speed up when surgery occurs? We only have one life, so it’s not as if we can try both routes and see which is best in the long run…we have to make the most thoughtful decision we can and hope for the best.

I was diagnosed at 8 and was already enjoying horseback riding and basketball. I had to give up both. My mother would argue that she and my father took a balanced approach to activities…I might remember Mom in particular as being more of a bubble person (love you, Mom!). Naturally, growing up I told myself that I would parent MY kids differently, if they had Marfan. I would let them do way more than I had been allowed to!

But then I grew up, learned a lot more, watched too many friends die too young, and had kids – one of whom has Marfan. I thought maybe I’d get lucky and J would be completely uninterested in sports. I mean, his mom is a freelance writer, and his dad was nationally ranked in Starcraft2 for a short time. What I’m saying is, the athletic blood does not run through our veins. Except, of course, in J’s. He wants to play all the contact sports. Jumping off furniture? Why not? Knee-high AFOs don’t slow him down.

J has watched his brother play sports, and begged from a young age to be included. I’ve been torn. I know the very real pain of having to give up a beloved activity. But, sometimes you don’t miss what you’ve never had (case in point: due to a stomach surgery I’ve never been able to have soda pop, and that doesn’t bother me). At the same time, if you’re too restrictive, kids can rebel, which can be dangerous. I used to sneak into gym class and participate in all kinds of things that weren’t good ideas.

And so we talk. He’s only 5 but he understands a lot more than you might think. He’s been keeping track of his medications for awhile now (what he takes, for which body system, and when he needs to take it). He self-advocates with doctors. He understands, on a very basic level, why he can’t do certain activities. When the Menininho was playing t-ball last year, we agreed to let J try out his preschool playgroup’s t-ball program. It was perfect! None of the kids had any idea what they were doing. It couldn’t have been less competitive or dangerous. So, in the fall, we allowed him to play soccer in that league. J understands that he is only allowed to play soccer until he graduates the preschool program. I like that there is a clean cutoff. Easier for him to understand, and early enough that he’s not terribly invested in it yet.

This summer, we’ve decided, in conjunction with J’s cardiologist, to let him play t-ball in the regular community league. The nice thing about having an older brother without Marfan is that we’ve been able to test out the leagues first. That’s how we know that even at 5 we would not be comfortable with J playing rec soccer, but t-ball is low key. We haven’t determined whether his cutoff will be the end of t-ball, or the end of coach-pitch. We’ll see how the latter goes for the Menininho this summer.

I don’t know if this is the right answer. My Marf Mom gut says that stopping risky sports before middle school will be easiest, but who knows what J will tell his future therapist? I think that’s just how parenthood goes in general though….muddying through, making the best decisions we can with the information we have, apologizing as needed, and trying to do better.

How do you make decisions about your/your child’s activities?