Musings of a Marfan Mom

Talking to Your Kids About Their Diagnosis


How to tell your child they have a particular diagnosis, whether that’s Marfan syndrome, Loeys-Dietz syndrome, autism, or something else, is a question I get frequently…multiple times while writing this post, in fact! Do you tell them in pieces, or all at once? Wait till they ask? Till they’re older? Is their diagnosis part of them, or something that they fight against?

We don’t want Marfan, or autism, to be a big deal in our house. Making them into a big deal makes them seem more scary. So, we’ve never had one Big Conversation. Instead, we’ve just talked about Marfan and autism around the house since the boys were babies, in age-appropriate ways.

For example, J knows he takes medicine. We tell him “you have something called Marfan syndrome, just like Mommy! It makes you tall and stretchy! It also can make your heart and lungs more tired, so you take medicine every day to make them stronger.” Since age 3, J’s been able to identify all his medicines by which body system they’re for, and which time of day he takes them, and he reminds me if I forget one. It’s a little part of his care that he takes pride in.

We got the Marfan syndrome A-Z book, and the Menininho in particular likes for me to point out the real-life identities of our friends and doctors in it. This book (geared towards 3-6 year olds) is actually a great way to open the door to a conversation. You can download it from The Marfan Foundation (not sure if they still have print copies). There’s also a book for older kids (like 7-11 year olds) called Marfan Does Not Mean Martian, written by an affected teen.

We talk about how Marfan makes us bendy and tall, and how much fun we have with our Marfriends. M attended the kids program at conference for the first time this summer, and asked the doctors “what problems does Marfan cause and why does it cause those problems?” I don’t know how much of the answer he understood and retained, but I’m glad he felt comfortable asking the questions.

I can’t even remember any initial conversation we had with M about being autistic. I know one happened over breakfast, where we talked about how autism gives him his good memory, and is also the reason why he is sensitive to noise and touch. Now that he’s 5.5 years old, we’ve seen the fruits of our approach pay off, in how he talks about autism to us, and to other people. M is proud to say “My daddy and me both have autism, and my mommy and J both have Marfan!” He wants to find more autism friends, since we have so many Marfriends.

The boys know that they are different, regardless of whether we’d ever said anything. Even at 3.5 years old, J realizes that his older brother doesn’t take most of the same medications that he does, and we’ve already had a conversation about activity restrictions (an upcoming post). We feel it’s important that they have a name for their differences from an early age. Having a name helps them shape an identity around that, whatever they want that identity to be. As I’ve written about before, maybe Marfan or autism will be a big part of their lives, or maybe it will be a very small part. Either is ok with us.

But, knowing what they have and what that means, particularly in the case of Marfan, is the key to managing it. So at 3, for J that’s knowing he’s got heart, lung, blood, and sleepy medicine, and a vitamin. In a few years, that’ll be knowing the proper names of his meds, and a little more about what they do. He knows his echocardiogram takes pictures of his heart, and as he gets older and asks more questions, we’ll talk more in depth. He’ll guide that conversation. By high school I was scheduling my specialist appointments, and so maybe he’ll do the same. I believe that a successful transition to adult care starts early though, and that’s a very gradual process.

How do you talk about your child’s diagnosis with them? Have you?

(video is of M leading J and some Marfriends in a “Marfan cheer” at conference)

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