Musings of a Marfan Mom

Please Don’t Say “I’m Sorry”

| 41 Comments

This is a post I’ve been working on for a couple of weeks. I don’t think I’ll ever be able to make it just right. I can’t even think of a catchy way to start it off.

We had Baby J tested for Marfan when he was two days old and got the results back a few days before Christmas. He has Marfan syndrome.

Neither Mark nor I were surprised. The first thing I noticed about our son in the OR was his beautiful long fingers, then later on his large feet and long legs (all symptoms of the syndrome).

How I feel about this is complicated. And because it’s complicated, my gut reaction was to not tell anyone. There were two things I didn’t want to hear: “This is your fault” and “I’m so sorry!” I think the first is fairly obvious. I mean, clearly Mark didn’t pass on the gene. I know it was me. However, assigning blame makes it seem like was a purposeful act, which it most certainly was not. Also, I don’t feel at all guilty about J’s diagnosis.

The second is harder to explain. I mean, yes, not having Marfan syndrome is preferable to having it. And yes, I feel sad when I think about some of the things that J will most likely go through, like surgery (quite possibly multiple; I’ve had 5 surgeries and 2 other procedures myself, not counting my c-sections). But, when I look at Marfan through the lens of my own life I’ve commented repeatedly that I am not sorry that I have it. There are days it makes me sad and days it makes me angry, but as I’ve written before I have found a lot of beauty in it and I believe I am exactly the way God intended me to be.

I feel like I’ve had to fight against the idea that because I have this illness I am “less than.” Hearing people say they are sorry for Baby J’s diagnosis (or even worse, if they were to follow it up with a declaration of how terrible it is or a guess at how we must feel) makes me feel as though they are making a statement about the quality of my own life, even if they don’t intend it that way.

What I realized though, was that hiding J’s diagnosis sent the wrong message: the idea that we were embarrassed or ashamed of him having Marfan. That couldn’t be farther from the truth!

Everyday I am amazed at my baby’s looong toes (his feet didn’t fit the 0-3 month footie PJs at 4 weeks!) and his lack of a chin (a feature I hate in myself but is endearing in him). I kind of take pride in those physical characteristics. I have long thought that children with Marfan are so beautiful and am always telling the teens how advantageous some of our unique features are. That is not to downplay the seriousness of the disorder, but Mark and I are making a concentrated effort to focus on the positives, so right now one of my positives is that my son looks like me…at least a little bit!

So, what does having Marfan mean for Baby J? To be honest, we don’t know. J might be affected like me, with mostly just skeletal & pain issues. He could also be more severely affected, with more eye and heart problems. Only time is going to tell. He has his first echocardiogram this week (well, technically his 2nd since he had one at 22 weeks gestation), then an eye exam in mid-February to make sure his lenses haven’t dislocated. I don’t expect us needing to think much about his diagnosis for a few years yet.

I’m the one who plans everything 5, 10, 20 years in advance though, so I’ll admit that as soon as my doctor gave me the news, I started considering J’s future. When will we start him on medication? How will we handle PE? Will he come to love the Marfamily and want to be involved, or will he resent it and wish that Mark and I had used reproductive technology to have a baby who didn’t have Marfan instead?

Right now, I don’t know the answers to these questions. I can’t know them. There are a few things I DO know though. I know that we will make sure J has access to the best doctors we can find. I know that Mark and I love him to pieces and will be the very best parents for him that we can. And I know that while Marfan will be a part of who J is, it will not define him.

Be Sociable, Share!

Related Post

41 Comments

  1. My father died of undiagnosed/treated Marfan related aorta failure, I think my reaction to your son’s diagnosis would be congratulations. Congratulations that you know, that you have the experience to help him navigate current medical thought on the issue, etc. Congrats that it is not a surprise, only a special trait for him to be accustomed to.

    [Reply]

  2. “I know that we will make sure J has access to the best doctors we can find. I know that Mark and I love him to pieces and will be the very best parents for him that we can. And I know that while Marfan will be a part of who J is, it will not define him.”

    I know something else, too, Baby J will be led through life, knowing that he’s NOT “less than” anything. I think that’s a marvelous gift.

    I appreciate this post a lot. Thank you for writing it. I’ll be mulling it over for awhile, Maya.

    [Reply]

  3. I’ve always hated the sort of fake pity that people put on others when something is medically wrong with their child. I totally believe that all children are a gift from God and that they are all made to be different. Your newest addition is so precious and adorable and I know how grateful you are for your sons, no matter what!!! I love reading your blog because you’re such a strong and amazing woman and really an inspiration to me (and probably a lot of other people too).

    [Reply]

  4. He’s lucky to have you for a mama.

    [Reply]

  5. Great post, Maya. In addition to the best doctors, he is also lucky to have you. Since you have been through this before, you will be a wonderful support to him from both an emotional and physical perspective. He is lucky to have you as his mom.

    [Reply]

  6. I was wondering a few days ago if you’d share the news of the testing with us. I guess I was assuming you’d have him tested, and I’m so glad you shared. I’ve been sitting here for awhile now, trying to put my thoughts into words. It’s not working out for me.

    What I want to say, though, is that Baby J will be just fine (but even that sounds dumb, because you don’t need me telling you that). He has a mother who is the perfect example of living with grace and conviction. He has the very best advocate he could ask for, and the perfect confidant. He’s already loved dearly by his family and his Marfamily.

    Congratulations, again, on a perfect little baby. And ohmygosh, when is your family up for Grey’s or House?!?

    [Reply]

  7. Thank you for sharing this news with us, Maya. I, at least, understand that it isn’t easy to talk about medical problems in your children — because they are perfect in our eyes and we don’t want anyone else to see them as anything but perfect. However, I tell my boys all the time that they are “perfection” and I honestly believe that. Just like M and Baby J are perfection.
    You have a unique perspective having Marfan and being the amazing advocate that you are — this will help and may hurt at times while raising your sons.
    I won’t say “I’m sorry”, but rather “good luck”!

    [Reply]

  8. I’m proud of you –

    [Reply]

  9. Baby J is lucky that he will grow up with a mom so knowledgeable about this syndrome and involved in the new developments in the Marfan’s world. Though it’s never a good thing to hear something like this, you are very blessed to find out early so you can at least go in with perspective and warning about possible complications. I truly believe it’s better to know than to have to guess, I so wish my SIL would have my niece tested. I think the fact that she lost her mom to a dissection makes her scared to know whether her daughter has it or not. It’s obviously her choice and I totally respect that, it just scares me a little. Anyway, good luck with everything, I am sure J will grow up accepting of and involved in the Marfan community. He sure is a cute one. :)

    [Reply]

  10. Good job Maya, I know that must have been hard.

    It’s a pretty tricky situation, and I can certainly understand how you might be touchy about people saying they’re sorry, since the marf community and your marifiness (yeah i’m making up words, don’t worry about it) are such major parts of your identity. I don’t think people mean this on purpose, but I can totally get while you’d be upset.

    I’ll be worried about J, just like I worry about your health, or mom’s health, or anybody elses. Of all the marfbabies though, J is especially blessed to have you as a mom. I can’t think of anybody else who is more prepared to be an advocate, a defender, and an unconditional lover for a kid. And because of that…I figure the kids will be alright.

    [Reply]

  11. I don’t see why people would find it necessary to say they are sorry or to point blame. It is what it is, and he is beautiful no matter what. He is lucky to have a mommy that has been there, and can help him out with things. You are awesome.

    [Reply]

  12. I’ll be honest, my first response would be something along the lines of “I”m sorry.” But not out of ‘fake pity’ as a previous commenter said. I may be ignorant to all that having Marfan can entail, I do know that it can lead to serious, life-threatening problems. So yes, my first thought would be to say “I’m sorry you have to deal with this.”

    I’m also a realist, so my next question would have something to do with the long-term prognosis. And clearly that’s where your head is too :)

    As you let people know Baby J’s diagnosis, try not to take “I’m sorry” comments as anything other than not knowing what to say. But feel free to smack anyone whose follow-up comment is anything other than supportive or positive.

    By the way, in the picture posted, I would have no way of guessing Baby J is a Marfan baby. What you see as typical Marfan characteristics aren’t apparent to me. He looks like any other happy infant to me :)

    [Reply]

  13. Maya, he is so beautiful! As the mom of a wonderful boy who just happens to have Marfan Syndrome myself I can understand alot of what you just shared.
    How can he not live an amazing life when he has a mother like you?! He is perfect, loved and very blessed!

    [Reply]

  14. Maya, I love this post. Not one of us gives birth to flawless children. Your thoughts give a wonderful perspective, and I’m so glad you shared with us. Your children are so blessed to have a mother like you.

    [Reply]

  15. Beautifully written, Maya! He is one blessed boy to have you as his mother. I completely agree with your feelings … If it weren’t for the complications I was at major risk for, Jason and I have always been completely at peace with having a child with Marfan. You are a wonderful mother with two beautiful and perfect little boys. I can’t wait to meet them next time you are in Ohio.

    P.S. Oh and I hate my non-chin, too! Jason always laughs that it’s a trademark of “my people.”

    [Reply]

    marfmom Reply:

    We are definitely having a playdate next time we come up…sometime late this spring or early summer. Mark makes a similar joke about our chins. :-)

    [Reply]

  16. Hugs, Mama! I have three boys with serious, involved medical issues, and hearing “I’m so sorry.” is not at the top of my list of things I want to hear about them. Our children are who they are and are wonderful little people making their way in this world. Life is precious and I plan on living this life, and helping them live their lives even if we don’t know what the future holds. Hang in there, Mama! ♥

    [Reply]

  17. It hit me the other night after you and I were had that Twitter conversation about having “long and lean babies” that I wondered if Baby J had Marfan.

    Before I “met” you, I knew very, very little about Marfan. I have learned so much thanks to you. I know that Baby J couldn’t ask for a better mama and daddy. As an earlier commenter said, congratulations. Congratulations on two beautiful baby boys! Congratulations on being such an awesome mama and daddy. :)

    [Reply]

  18. He is gorgeous, and you are awesome. ((Big hugs))

    [Reply]

  19. When I first read that baby J has Marfan, it made me smile. Not sure why, but nothing holds you and your family back, Maya! He is a lucky boy to be with you and I think he is absolutely perfect.

    [Reply]

  20. Hi Maya,
    It’s been a long time since we have talked but I have followed your facebook, I have to say that I knew the risks of having children with Marfan’s also, and I gave birth to two very beautiful children who both inherited the gene. My son now at 12 has sight, heart, and lung issues. He has a severe case of scoliosis and is pending surgery within the next two months, which will be his second… I too knew the day he was born that he was going to have it… he had the long fingers and toes and he was premature weighing only 4lbs 14 ounces, but he was 21and a half inches long… my daughter was a little harder to diagnose, she mostly has just the skeletal issues. My son and I have talked about it, and I will tell you what he is the most understanding and wonderful boy ever. I would not have changed my mind about having them, they are my world and they have some challenges to face, but I believe that it is making them strong, understanding kids, who have great ambition for life.

    [Reply]

  21. He is completely adorable.

    Great post momma. You already know how I feel on this topic.

    [Reply]

  22. Thank you for sharing Maya. Beautifully written post. I’m still getting used to the idea that you are living a life so different than my generation who mostly chose NOT to have any children. Your 2 pregnancies have scared me until your babies were safely delivered. With the advances made in treating Marfan Syndrome, I believe your children’s experiences will probably be much different that we have experienced. You have a beautiful family. Congrats. Love and hugs. I just turned 55 at Christmas time, and I NEVER would have imagined I could be LIVING WELL at this age. Life is good.

    [Reply]

    marfmom Reply:

    I can’t believe how far Marfan research has come even in the almost 18 years since I was diagnosed. I predict amazing advancements by the time J is in high school. Life IS good. :-)

    [Reply]

  23. Glad you shared Maya. You’ll be able to now help other parents navigate Marfan with their children as you post.
    I understand just how you feel too. I remember before my J was born my MIL always saying she’d pray that he didn’t have Marfan- not that this is bad, but it was the impression she left. That somehow having Marfan would be this horrible life for him. He was diagnosed this December at 3 years old and I’ve known since long before that he would be. My current challenge is to not become the scared, overprotective person that my parents were and allow J to experience life as a “typical” kid as much as he can. I’m so thankful for how much more is known about Marfan than when I was a kid and have hope that he may never need open heart surgery as I did. But I know that no matter what he will do fine and I can help him walk through this b/c of my experience, just as you can for Baby J. Their lives can be just as full and happy as any other child.

    [Reply]

  24. You’re right. There is no shame in this. He is a lucky little boy to have such awesome parents, and such a sweet brother. He will start medication when it is time. As for PE, they schools have something in place for situations just like this, and if they don’t, they will now. I read articles and did activities (crossword puzzles, word searches, etc) based on the articles. It wasn’t bad, and I didn’t have to change in the locker room!!! Look at all of us, our children, our lives they said we probably wouldn’t have. He will have a wonderful life, like all of ours. I know you wouldn’t change your life, because you wouldn’t be who you are now, and have these GORGEOUS little men. I wouldn’t change mine for a minute either. And you know what? J won’t want to change his either.

    [Reply]

  25. I wouldn’t dream of saying either of those things to you. Baby J was created in love. He is perfect just the way he is, Marfan or not. One thing’s for sure: God knew what He was doing when He chose the PERFECT PARENTS for Baby J. No matter what issues Baby J faces in the future I know you’ll love him unconditionally, lift him up and empower him. Because you’re amazing like that. I pray that his future holds love and happiness above all other things.

    [Reply]

  26. Congratulations Maya and Mark! I thought M was one of the
    most beautiful babies ever, but it looks like he has
    some competition. Thanks for sharing. It is a beautiful post.

    [Reply]

  27. I think you are amazing. Baby J is beautiful, made perfect for what he needs to do on this earth. He was given to you because God knew that you would be able to raise him in a way that he could love who he is, that he could see that having Marfan never got you down. That it won’t beat you.

    He will see that, and I don’t see him ever regretting or hating you for giving him his life.

    [Reply]

  28. As a Mom of 3 with a plethera of medical issues, some we knew may be inherited before conception & some we had no idea, I can see both sides of the coin. My kids’ dad & I made the decision that although we prefered they not have what we did, if it was meant to be then they were coming into a family who knew what to expect & could help guide them in having the best life possible.

    I was telling someone the other day about all the advances in Marfan knowledge in the last 17 years since Daniel was diagnoised and how it went from an almost guarenteed life shortning condition to a usually manageable one with more & more living full lifespans. The future is even more exciting and besides with parents like you he is going to do GREAT!

    Hoping to see you here at convention in July!
    Shelly M.

    [Reply]

  29. I love this post for so many reasons! My husband has Marfan’s and 3 of our 4 children also have Marfan’s. They are proud to be just like their dad. We have always been open about everything..discussing things casually over the diner table at times.

    I wanted to share with you something a genetic counselor shared with us when we were deciding about making our family bigger with the knowledge that we would be risking having children with Marfan’s. She looked at us and said, ” No one would have any children if they worried about the genes they would pass to their children.” SO true!

    Congrats on your beautiful baby!

    [Reply]

  30. So I think he’s lucky to have you as a mom because you have Marfans too. God doesn’t make mistakes 😉

    [Reply]

  31. Hey Maya. I wondered if that’s why you posted after his birth that he had long fingers.

    Think about the advantages that J has, being diagnosed so young, with a mom who is very knowledgable about Marfan’s syndrome, and who will make sure he has the treatment and care that he needs. You know better than I do that lots of kids aren’t that lucky.

    But anyway, congratulations on J! He’s beautiful, and send my empathy to Meninho, from one older sibling to another. And remind him that he has been given the best gift of all, a younger brother. (He just won’t appreciate that for 20 years or so.)

    [Reply]

  32. Maya, you spoke your heart and covered a lot of important ground. The thing that stood out for me and my girls, is that they never would have had the experiences they have had, and will have, nor would have met the beautiful people in the Marfan family, including you, M, Mark and now, J. So proud of you. You are a great Mom.

    [Reply]

  33. There are so many positives to an early diagnosis. You are one of the most knowledgable people I know about Marfan, and you don’t have to fear a steep learning curve with an unknown disorder like many parents. You know your baby has this and so you know the precautions that can be taken to help protect him. Going through this yourself means he will have a safe person to talk to about his feelings on it. And you must also remember Marfan is a spectrum…he could have a much milder version than you do.
    You are right, it isn’t ideal. But you are also right that this isn’t the end of the world. He is a beautiful boy, just like his big brother. And he will have a wonderful life. And there is absolutely nothing to be sorry about.

    [Reply]

  34. Maya, Baby J is lucky to have you and Mark for parents. He will grow and develop with all of your love and his personality will reflect all of that love. I am hoping and praying that the advances for a Marfan Syndrome cure will come soon. We are who we are. Everyone of us
    probably has something we would like to change. You are right. He is not defined by Marfan Syndrome. We will all love him for just being himself. Ruth

    [Reply]

  35. Hi! This is Amanda Bruckelmeyer (Sara Slack’s daughter). I really enjoyed reading this. I didn’t really read the comments above but one popped out at me that said “God doesn’t make mistakes.” I completely agree with that. God made you who you are for a reason- and look at all the good you have done- a truly incredible person. Your little boy will be the same way! God made him who he is for a reason too and has an important and valid purpose for him. He is a beautiful little child of God! :)

    [Reply]

  36. I can only say your post made me cry Maya! but it was a cry of happiness, and admiration, too, because i would love to be as strong and positive as you are, and i think i´m gradually making improvements in what refers to the Syndrome. And of course it doesn´t have to do with whose fault it is, because, as you said, in order to be guilty of something you must have wished for something to happen!! Enjoy every moment with your children, and with your loving and caring husband, and don´t worry about future events, you never know, but what you can be sure about is that he won´t suffer about the Syndrome, having you at his side! you went through many things, and you know exactly how it feels, so he will never feel alone or discouraged! Congrats!!!

    [Reply]

  37. Pingback: “Please Don’t Say I’m Sorry”–Fantastic Post from “Marfmom” | The Lewis Crusade

Leave a Reply

Required fields are marked *.