Musings of a Marfan Mom

Marfan Through A Brother's Eyes

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Today is the 2nd installment of a three-part series: Marfan Through the Eyes of the “Unaffected.” You’ve read my story, but what about how Marfan has affected those around me?

Over New Years Mark, the baby, and I met one of my college girlfriends and her fiancée for lunch. This friend has chronic pain, worse than mine, and at one point during the meal gestured to her fiancée and remarked “Yah, I don’t even know why he’s marrying me!” Her fiancée pointed at Mark and said, “Well, he married her!”

And that got me thinking…why did Mark marry me? [I mean, besides love and all that jazz.] How did he/does he view Marfan that makes him want to stay, when it’s made other guys run away? And from there, I wondered about the effects on my other family members growing up. Aside from the medical bills (OH, those bills!), we never really discussed the impact my illness had on them.

Last Monday you heard from my mother, and today my brother Matthew writes. My husband, Mark, will round out the series next Monday.

Matt is currently teaching 4th grade in New Orleans as part of the Teach for America program. He writes about experiences at the blog Relentless Pursuit of Acronyms. In his “other life,” Matt is a Blues musician and sports journalist.

Hi, I’m Matt, Maya’s kid brother. Unlike my sister, I am neither a mother, nor do I have Marfan. I’m 5’10, play basketball a few times a week, and can’t do any of the bizarre hand tricks that Maya can do because she has a zillion more joints than me or something. Despite me not displaying any of the physical traits of Marfan, I think its fair to say that my life has still been touched by the long, boney finger of the syndrome.

I was 6 (Maya was 8 ) when she was diagnosed with Marfan. I’d like to say that I never thought there was anything different about Maya growing up, but that just isn’t true. She was 5 feet tall when she was 8, which to me, meant she was about 13 feet tall. Despite the fact that she was alarmingly skinny, I assumed that she was going to up to be a professional basketball player, and launch our family (or at least me) into fame and fortune. I remember looking up the tallest woman in the book of world records, and then trying to estimate how long until Maya passed her. How would it be to be the female Shaq’s little brother?

Pesky details like enlarged aortas and dissection dangers didn’t really mean much to Little Kid Matt. Heck, I couldn’t tell my aorta from my armpit. I figured that since my older sister was huge, that she must be good at sports. Being a hyperactive little boy without any neighborhood kids to play with, I would insist that Maya come out and play whenever possible, much to the chagrin of my parents…and probably Maya now that I think of it, since she would have rather stayed inside, doing boring things like reading.

My parents tried to explain that Maya couldn’t be subject to the same kind of roughhousing that might be okay for other kids, but I couldn’t ever understand why…only that she had some sort of vague medial problem that gave her a huge scar on her tummy, and now she couldn’t burp.

I think Maya might have used this for leverage growing up. If we got into a fight, Maya knew that she could smack me, but I could never physically strike back. I grew to resent this a little bit. So she was tall and skinny, and she could make her fingers do this disgusting snapping sound…but from the looks of it, there wasn’t anything wrong with her right? She couldn’t be so sick that a smack in the chest could actually seriously injure her, right?

I think I started to understand things a little better when I turned 11. First, I finally studied the human body in school, and realized just how important all those parts of the body that we couldn’t see are (like the heart). Second, one of Maya’s close friends passed away due to complications from Marfan. In addition to getting an uncomfortable reminder of the mortality of humans at such a young age, the possible severity of my sister’s disorder finally sunk in. This wasn’t just something that Maya might use to get an upper hand in a fight…this could actually kill her. I remember thinking about this at night that year…wondering if something like that could ever happen to my sister.

The event was tragic, but had a silver lining, as it brought out the activist in Maya. Determined not to let something like this happen to her (or frankly, anybody, if she could avoid it), she decided to become an expert on Marfan. This meant that everybody in our house needed to become an expert too. Sure, there were times when I quite frankly did not care what possible connective tissue disorders King Tut or Abe Lincoln had…but deep down, I was impressed at how Maya chose not to mope around, and take charge of her health, even when she was quite young.

Growing up with a Marfan sibling wasn’t always easy, but we made it through pretty well by following a few simple rules. We, as a family, had many conversations about exactly it meant (and didn’t mean) to have Marfan (Matt, your sister isn’t crippled…she just isn’t going to be able to play Rugby with you in the backyard). We had a pretty strict rule about not mocking Marfan, although we weren’t so uptight that we completely lost our sense of humor over it. As siblings, we tried to find mutual activities that we could all participate in, and a lot of the time, I forgot that Maya even had Marfan.

That is, until she started doing those gross finger tricks again.

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8 Comments

  1. I absolutely loved this! How thoughtful and entertaining! Hats off to you, Brother Matt!

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  2. Well done, Matt! I pictured my son as I was reading this…I know that he’s felt many of the same things you’ve mentioned in regards to his younger sister (who has Marfan syndrome). Thanks so much for sharing your viewpoint!

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  3. Excellent – I know all about those gross finger tricks. I swear my teenager does them just because he knows they skeeve me out!

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  4. Sweet :-) And interestong-first time I’ve heard of Marfan! Stopping by from SITS!

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  5. I had never herd about marfan until I came across this blog. This was a touching post from an interesting perspective. I’m so glad I read this and now know more about this condition.

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  6. This is beautifully written and told. Your family has a gift for communication.

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  7. Thank you for sharing Matt. I often wonder how all this affects my youngest child, our daughter.

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  8. What a great series! I can identify with your mother in many ways as a mom of a six-year-old with Marfan Syndrome. I hope that my three other children (one yet to be born) will be able to speak fondly of their sibling and find ways to interact with her beyond any physical limitations she has. I also hope that someday there will be a man such as your husband who will be dedicated to my daughter and love her despite the challenges she may face as he rises to the challenge of being her partner. I imagine his role will be different than the average many due to my daughter’s physical limitations.

    I will continue to follow your blog as I am not in touch with many others who have Marfan Syndrome but perhaps someday my daughter can connect with others also. She knows she has “different” features and abilities . . . but don’t we all in some form or another?

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