We havent really talked with G about Marfan Syndrome. She knows that she and Daddy take medicine and that they go to a special doctor in Baltimore. For two years, G has taken Atenolol as a preventive medication. B takes a cocktail of meds, including a blood thinner now. Its just part of the morning routine. G has never really asked us what the medicine is for - she will simply tell you that it will help her be big and strong like Daddy.
Other than that, we havent told her anything else. Why? Well, at first she was simply too young to even understand what we would tell her. Now that she is about to turn 6, is it time to talk with her about what Marfan is and why she takes her medicine?
It's not that I want or need to hide it all from her. At some point, she needs to understand what Marfan Syndrome is and what her limitation are or could be. Right now, she really isnt on any restrictions - she is healthy - even her aortic size is in normal range. Docs tell us to keep her active and that she can do anything a normal 6 year old is doing - granted, no games that involve throwing balls at each other (like dodgeball) but those games arent allowed at school anymore.
With all these assessments happening at school and the therapies we are going to be starting, is it time to explain to G that she and Daddy have Marfan Syndrome and that sometimes things are going to be harder for her than other kids, like handwriting. Would that help her as she starts this school journey? Or will it simply teach her that she is different and then make her feel worse about the fact she cant do things like her classmates can (she already mentions that other kids do art class better than she does)?
I dont want her going through life saying "Well, I am not good at that because of my Marfans". I want her to be a strong girl who is confident and smart and successful. So what do I tell her now to explain that sometimes things wont be easy but she can still do it all!?
2 comments:
Hey there, I saw your blog through Maya Zimmerman and I am a teen with Marfan Syndrome. After randomly stumbling across your blog I realized how grateful I am that I knew about Marfan as a kid. While I never knew what it was exactly when I was young, I understood it. The fact that I knew my limitations when I was young has helped me excel in different areas. So while I'm only a teenager and not a mother, I say tell your girl what she has and that while it is a part of her, it doesn't have to define who she becomes. I hope I've helped, I wish you all the best.
I just spent the last 45 minutes or so reading through your blog entries and I just wanted to say thank you for writing it. Your story is practically my story in so many ways. I too am the only non Marf in my family, and have been through aorta repair surgery with my husband and raising two kids, ages 3 and 6 with marfan syndrome. And we are also struggling with how much to tell the 6 year old. Thank you for voicing all this, as it really let me feel not so alone!
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