Musings of a Marfan Mom

Delaney’s Story

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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.

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One Comment

  1. Thanks Maya and Delaney for this. I needed to hear it! I am sitting at my computer trying to work multiple Dr. appointments into my schedule. I’m also having a hard time sitting because my back is getting worse! I needed to hear/read your last paragraph. I do have puppies and kitties to pet, and beautiful and wonderful partner to spend the day with and our terrific son to get from school. Thanks for the reminder to focus on the good stuff and to endure and move past the bad!

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