Musings of a Marfan Mom

My Feelings


Yesterday I wrote about Menininho’s evaluation by an audiologist.

I’ve got to be honest. I’ve gone through a range of emotions over the past couple of weeks since his 15 month checkup.

I’ve worried about being crazy. I mean, my family has REALLY crappy medical luck. With the exception of my mom, who “only” had cancer, my siblings, dad, and myself all have random, unrelated medical problems. Then there’s my extended family, and of course Mark. As I told the pediatrician a couple weeks ago, I’ve felt like I’m just waiting for the other shoe to drop sometimes, waiting to see what’s wrong with Menininho because it seems impossible that he would be totally healthy. As evidence mounted up over the past few months, I worried I was over-analyzing things because of our family history…being that crazy hypochondriac mom that every doctor loathes talking with.

I’ve been frustrated with the bureaucracy. I know my stuff. At the end of the day though, what happens with us is left to the hands of the doctors and other specialists. Mark and I have felt something was not right with our son for awhile, but we’ve had to go through that process to get his various tests and now to find the proper therapist.

I’ve been frustrated at Menininho sometimes. Things would be so much easier if he could just UNDERSTAND me! He understands “no” pretty consistently, even if he doesn’t always choose to obey it. I am not sure that, other than his name, he understands any other words. It makes daily tasks really difficult! Then I feel like a terrible mother for being frustrated at him and keep thinking that there must be something I have done to cause this (which all the doctors have said is not true, but doesn’t stop me from thinking it sometimes).

I get a pang of sadness (maybe jealously?) watching other kids interact with their parents. It’s particularly hard at church, where there are so many kids his age. It’s like a constant reminder to me that my son isn’t where he should be and every time someone comments on “what a talker” he is, I want to cry a little bit because it’s not talking, it’s mostly undecipherable gurgles.

Along those lines, I’ve had anger towards the few people we’ve told who have totally brushed it off or argued about it with me. I’m. His. Mother. I spend more time with him than anyone else. There is no one who knows my son like I do. I’ve also gotten mad at people who have no idea what’s going on though, which is not really fair. Like, over Mothers’ Day a woman asked me if my son was talking yet. I said no. She proceeded to ask if he could say this word or that word and each time I repeated “no, he doesn’t talk yet.” When she started insisting that she’d heard Menininho say a word, I just walked away.

And exhaustion. I feel mentally exhausted. I’ve been reading, and talking with friends in the field, and doing assessments on Menininho, trying to figure out what the speech therapist might want to know so that I’ll have that information ready. It’s a lot, or it feels like a lot. I wish I knew where this was going to take us, but I don’t.

Here are my parting thoughts. I’m no expert on this of course, but I’ve already thought of a few dos and don’ts if you’re in the position of supporting a parent going through this process.

1) Ask if the child has said a word yet. I know that when my son finally says his first word, I will proclaim it from the mountaintops, Facebook, Twitter, my blog, and texting. Until then, assume no news is no news.
2) Tell me about your friend’s cousin’s half brother’s neighbor who miraculously caught up to where he was supposed to be all on his own, within a month, and learned to speak 5 other languages to boot. This is not the same thing.
3) Say “well, it could be worse.” I’m on Twitter. I correspond regularly with families who have had devastating things happen to them. I know it could be worse. Doesn’t mean I don’t have a right to grieve my son’s challenges too.

1) Ask how the diagnostic process or therapy is going.
2) Offer a listening ear.
3) Be optimistic (just realize there can be a fine line between optimism and being dismissive. Comments like “You’re doing a great job” or “You caught this early” are more comforting than “everything’s going to be fine.”)
4) Offer advice if you’ve actually been there, or if you happen to be a related professional. I know I’ve appreciated the suggestions of which doctors to see when and what books to read or therapies to ask about.

Mark and I are extremely grateful to everyone who has supported us thus far. The emails, tweets, and blog comments have been a huge lift to us. Thank you.

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  1. Maya, thank you for posting this. I’ve felt similar feelings with respect to a matter I’ve had to personally deal with for quite a while now. Granted my issue is totally different from yours, the the feelings it elicits are similar. Your do list, #3 is exactly the words I have been looking for. Dismissive, that is what comments like “it’ll be OK” or “it will happen when it’s meant to” are. I also liked how you talked about your right to grieve. Because yes, there are worse cases out there, but yours is real and serious to you and you definitely have a right to grieve. I hope you are able to get the help you need for him and I think you’re doing a great job :) It’s so hard to stick things out with doctors, they can be so unhelpful and disinterested at times and that can be stressful and disheartening.


  2. Thank you for your honesty. It is real and refreshing. Imagine how much hurt would be avoided if everyone could follow your do’s and don’ts when it comes to ANY hard/bad/difficult/unexpected situation in people’s lives. You are a wonderful mom and your boy is lucky to have you. Best of luck with the next steps. I hope you get some answers soon.


  3. What an awesome and honest post Maya! I have seen first hand the way that people can “judge” the development of other peoples children since my mom is a preschool teacher with 3-5 year old kids. I’ve also watched a lot of my little cousins grow and develop and no two were the same.

    I am sure it seems discouraging and difficult but from what I can see you are an amazing mom and your son and future children are so lucky to have you! You’re proactive, honest and willing to do whatever it takes to ensure the best care possible for them! You’re an inspiration to all the moms out there and future moms like myself – well not anytime soon but you know someday 😉


  4. Thanks for the do’s and don’ts list…that is very helpful. I think people tend to talk about people they know with similar things quite readily, especially medically speaking, because sometimes they have no other way to relate. I have done that so I am sorry. I will be better :) thanks for this post- it was very interesting to read ( well all of your posts are haha). Ok I am done now!


  5. All those feelings are totally legit, Maya. *hugs*

    A friend of mine is concerned that her son is behind developmentally, so has been getting him checked out. Apparently California’s Early Start program is quite good – may be something to add to the mix.


  6. Oh Maya, your blog always impresses me. You are so amazing at expressing yourself honestly — I really admire that. I’m so sorry you, your family, and M are going through this. I wish I could provide you with advice on auditory processing, but I don’t have first-hand knowledge. Though Aaron does have other difficulties outside of Marfan-type issues, like motor planning, sensory processing, and expressive language delays. And, I’ve also been so frustrated with how others respond to it or (NOT) provide support to me, his mother. Isn’t being a mother the HARDEST thing in the world?!?! (as I’m sitting here covered in vomit from Aaron’s stomach flu!!!!)

    And, honestly, like we say to all mothers whose children were just diagnosed with Marfan, thank God it was caught early. Dealing with these issues with our children is similar to grieving a loss. Give yourself time to get to acceptance. And, arm yourself with knowledge — as I know you will continue to do! Good luck, and I will follow the progress!


  7. Hey Maya, I’m sorry to hear that you’re going through this. I don’t know anything about auditory processing. There is a woman in my ward (it’s Elyse’s sister, actually) who has at least one son, maybe two, who are language delayed. I’m not sure if it’s auditory processing, but she might know some things that can help you. Good luck! We’ll keep you guys in our prayers. I know I live far away, but if there’s anything we can do, let me know!


  8. You said it…you are his mother! You know him best, and you have the best instincts about what is happening. You can also listen to Heavenly Father’s advice for you.

    Hang in there!


  9. Hang in there, Maya, and continue to do what you do best — arm yourself with knowledge, advocate for your child and (most importantly) love your son unconditionally. Mehino is so lucky to have you for a mom (and Mark for a dad)! Take care and keep us posted.


  10. This is a great post. If I was still teaching med students and residents I’d make each one of them read it. I used to tell people that if you just listened to moms and the kids that they would give you the diagnosis, but too many physicians out there think that this can’t possibly be true. I hope that your little guy hopes talking soon. If it gives you any comfort, my toddler was a preemie and started talking very late. He’s now three and has a pretty significant delay, but he’s getting there. Hang in there and keep fighting for your son!

    xo – Erin


    marfmom Reply:

    Haha Erin, that reminds me of a story my husband told me. When he was very young (7?) he diagnosed himself with appendicitis. The doctor refused to listen to him until the appendix had actually ruptured, then took the credit for the diagnosis himself! Apparently he didn’t think kids that age could figure it out.


  11. Please, try not to think that your are a terrible mother! Because that only magnifies the problem and all the bad feelings!
    You Know I’ve been there! – where all our expectations and dreams are torn apart by the reality! What is real is that nobody is completely healthy! And those who seem healthy just don’t know what is wrong with them, yet! I concider those who know what is wrong with them luckier, than those who never had to go to the doctor!
    Your son seems very strong and healthy! Most importantly he has a mum that doesn’t turn a blind eye or give up!
    I wish all the best for you and your family! I will pray for you to be strong, filled with humour and optimisme – as it is mostly in your character!


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