Musings of a Marfan Mom

December 2, 2016
by marfmom
1 Comment

What I Want My Son to Take Away From Isaiah Austin’s Announcement

* My views here are my own. They are not representative of The Marfan Foundation in any way.

Dear J,

What a time we live in, where Marfan is all over social media – trending twice in one day – due to two famous individuals living with it! However, with such mixed messages as “Isaiah Austin to Play Basketball Again: Is He OK After the Marfan Syndrome Diagnosis?” and “Austin Carlile’s Devastating Message to Fans: ‘I Won’t Get Better’,” it can be hard to know what to think. People are asking what a Marfan diagnosis really means, and how they should live their lives. That’s why I’m writing to you today. There are many lessons that I want you to learn, but one of the most valuable will be how to take care of your body and advocate for yourself.



There is some frustration now, because for two years Isaiah Austin was held as a role model to the youth in our community. He told all of you that yes, Marfan syndrome can make it necessary to adjust your dreams, but you can and will develop new dreams and those new dreams will be amazing. But then seemingly abruptly, he is saying no, he never did leave his dream of playing in the NBA and that basketball is important enough for him to set the risks aside and play anyway. This is not the example I want you to follow.

Right now, the word stable is being used in the media as though it means in remission. This is not the truth, J. Stable for us means that your aorta didn’t grow between echoes. It says nothing about what could happen a day or a year from now. And while doctors may have different ideas about levels of risk, we know that there are some activities that can be universally harmful to us, because of the risk of injury, aortic enlargement, and death.

There has been speculation about the conversation Isaiah had with his doctor. I’d encourage you to reserve your judgement. Such conversations are private. Instead be concerned that the media is calling this the “Marfan Miracle,” and acting as though Isaiah has been told he is cured. We know there is no cure for Marfan.

I have watched person after person die from this disorder, people that I have come to care for and love. That changes you. There is immense gratitude for being part of this community, don’t get me wrong, but there is a heaviness that I live with too. Some people will tell you that restrictions aren’t necessary, that your only limit is your mind. They’ll say that restrictions hold you back. This is not true. I will not parent from a place of fear, but I will parent from a place of caution. To throw caution to the wind is to play with fire, my son. While treatments have improved our life expectancy, Marfan is not a diagnosis to be flippant about.


It is not giving up to live your life within some limits.



My sophomore year of college I took out a notebook and wrote a 5 year plan. Then I wrote another. And another. I had a plan if I went to grad school, and one for if I didn’t. I had a plan for if I married your dad, and one for if I didn’t. I had one that involved kids, and another that didn’t. And when I was finished, I realized that all my plans made me happy. I showed my Type A, slightly control-freak self that there is more than one way to live a good life.



That’s what I want you to take away from this, J. What Isaiah said originally, that is what is true. Marfan will necessitate not participating in some things, like the indoor soccer team you mentioned earlier this week. Some days the pain from this might be intense. You may be mad at your dad and me, and your doctor. As an adult, you’ll be making your own decisions, and deciding what risks to take. I promise you, if you put your safety first, you will find so many options for happiness.



And while many in the community are disappointed now, maybe our fault is in putting all our proverbial eggs in one or two baskets. Role models are important, but we don’t need someone famous for that, nice though it may be. When you go to conference, you only have to look around to see a host of people who have learned and are learning to make new dreams. I pray that you live your life in such a way that someday you will be such an adult for the youth coming up the ranks.



Love,

Your mom

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November 2, 2016
by marfmom
2 Comments

Review: Spot 12

Spot 12: The Story of a Birth is a graphic memoir by Jenny Jaeckel, of her daughter Asa’s time in the NICU. Jenny was planning a home birth, goes to the hospital for an ultrasound, and leaves five months later. This is a story of how an unexpected hospital stay can turn your world upside down, and how “do no harm” is more complicated than we would like to believe.


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Although none of my children have had a NICU stay this long (Miss R was there for a little over a week), there were definitely aspects of Jaeckel’s story that I could relate to. I also found myself wondering repeatedly if this was how my mother felt during my NICU stay and repeated hospitalizations (I spent more of my first 2 years in the hospital than out of it).

At one point Jaeckel writes about a nurse who didn’t want her to touch Asa and how it caused some contention. I had a nurse like that in Miss R’s NICU. You’re in this high-stress situation already with having a sick child, you’re trying to help them get healthy, and bond with them, and respect the professionals, and then you get conflicting instructions from said professionals and it can just feel like Too Much.



There’s also this part where the author writes, “You have to let your baby go, into the hands of the surgeons, and her own destiny, whatever that is. When you have a child you give birth to your own heart. Your own heart goes under the knife.” J has only had outpatient procedures but I can’t think of a more true statement than this. That moment your child is laying on the gurney, being wheeled down the hall away from you…Jaeckel captured that moment perfectly.

Not to spoil anything, but you’ll see how medicine is an imperfect science, and measures that should be healing can actually be problematic. This is exactly what parents of medically complicated children worry about. When I was a child, I’d have one surgery, only to require another 2 to fix troubles that arose as a result of the first. Even now, as I’m preparing for another surgery, the surgeon gave me some general statistics on the procedure, then cautioned, “but I can’t assess YOUR risk percentage.” Being a parent, and a surgeon, is about trying to make the best decisions possible while realizing there is only so much that can be controlled. That is really difficult to acknowledge to yourself.

The one thing that threw me initially about Spot 12 is that all the characters are animals. I’m curious to know if there was any particular reason that Jaeckel chose this way to illustrate her graphic novel. It’s kind of cool! 

If you haven’t figured it out already, I highly recommend Spot 12 to anyone who has dealt with medical issues in themselves or their children, especially if there was a NICU stay. That said, it may be triggering, so proceed with caution.

You can buy Spot 12 from Amazon and Barnes and Noble. You can connect with the author on Twitter or her website.

* I was given this book to review, and no compensation for my words. All views are my own.

September 26, 2016
by marfmom
1 Comment

Delaney’s Story

I’m excited to share a post from one of my former teen council members, Delaney. Delaney has Ehlers-Danlos syndrome and is a force to be reckoned with.

As cliché as it sounds, Ehlers-Danlos syndrome is like a box of chocolates. Some days you have the energy to attend a rock concert, buy a new puppy, and go swimming with sharks. Other days you cannot make it out of bed. EDS is a perplexing and painful puzzle that constantly tests your faith. But those days where you have enough spoons left to conquer the world and come out on top? Those days make this a life worth living.

My most recent struggle has been the diagnosis of neurogenic thoracic outlet syndrome, a rare nerve disorder commonly found in us zebras. When I was younger, I joined a swim team after learning it would help my joint pain, and have continued until just recently. Unfortunately, last year I started having severe arm and shoulder pain, and I would lose feeling in my fingers. Not understanding what was going on, I saw an athletic trainer and physical therapist who tried to strengthen my weak back muscles. Then, at a short practice this summer, I lost feeling in my entire arm. Mystified and teary-eyed,my mom and I saw an orthopedic specialist who diagnosed me, and explained that the pain and tingling happens because the nerves near my collarbone are compressed. She suggested physical therapy.

I have been in physical therapy for some type of weakness or imbalance since I was little. I have also been in physical therapy for my shoulder since the pain started, so her suggestion to continue PT left me feeling hopeless. Not to mention ibuprofen had decided to stop helping the pain. Unable to do any type of physical activity, I wanted to scream. When I was younger, I had to quit Irish Dancing. Now swimming? Unbelievable.

Nevertheless, for every hundred bad days, there is one good day.

My ray of light came about a week ago, after auditions. I am an oboe performance major at Lawrence Conservatory, and, despite the joint pain I have, performing gives me a rush like no other. This year, I earned section leader of both our wind ensemble and orchestra, an honor that left me speechless. Despite everything, despite having to quit swimming, despite unhelpful doctors, despite my physical therapist giving up on me, despite crying episodes at school, despite dropping conducting class, I have a silver lining.

Yes, there have been days when the pain is so bad I cannot practice. There are days when I lie in a lump, crying because I feel useless. There are days when I want to give up. But, I don’t. I am here for a reason, and even if the reason is to make one person smile, I will take it. There are always people who love me, and are willing to help me when I am down, and I want to be there for them as well. Just because things do not go the way I plan, I will always keep moving forward. There are still sunsets to watch, new things to learn, puppies to pet, scary movies to scream at, friends to make, people to fall in love with, music to make, and lives to change. I want to be here for it all.

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Delaney is a 20 year old student at Lawrence University, double majoring in Gender Studies and Oboe Performance.