Dear little Abbey,
I don’t remember when you’ll understand what it means to have Ehlers-Danlos Syndrome, but at age 7 you already know the ways you are different. Your first knee dislocation was scary, but you didn’t know it wasn’t a normal injury for someone in elementary school. When you dislocate your knee a second time while coloring on the floor, you are scared. Even at your age, you know coloring isn’t supposed to hurt. You’ll be afraid to sleep at night because you are scared to dislocate again. It breaks my heart now to think of how scared you were. However, the fear will subside and it won’t control you. You are so strong, little one.
After another dislocation you’ll start to feel different from your friends. Your doctor will not let you play outside at recess for a while, so instead you’ll stay inside. Your classmates won’t understand. Your teacher will try to explain it to them, but it embarrasses you. You’re resilient though and this won’t phase you for long. You’ll be back to the soccer field before you know it.
Speaking of soccer, you’ll also get these huge knee braces to wear when playing and you’ll hate them. Sorry about this. A team parent will make a joke about the braces when they think you can’t hear them. This will make you hate your knees for the first time and you’ll cry later that night. I promise their words won’t stick with you forever, but you won’t forget the feeling of being called out for your differences.
You’ll go through multiple tests and doctors appointments each year, but most people won’t even know this part of your life because you don’t let it define who you are. There will be lots of pain you won’t understand, but you’ll learn to distract yourself by entering the world of books.
You will affirm your strength at age 8 when you dislocate your knee while Mom gets her haircut. You will be scared and in pain at first, but instinct takes over and you’ll put your kneecap back in by yourself. Having the power to decrease your pain levels without the hospital will feel so good. You’ll dislocate your shoulder and fingers a few times in elementary school as well, but you put those back in on your own too. Can you believe how brave you are going to be? I’m so proud of all you’ve done.
You’ll start playing lacrosse in middle school, despite doctors warnings about sports. You love it and will work so hard to improve. Eventually by Junior year of high school, you’ll make the Varsity team. You also join the cross country team in high school and really find your passion. Your body isn’t meant to run, but the feeling of having control over your pain while you run sets you free. You’ll work hard to get faster and will battle many injuries. Eventually you’ll be voted Captain and you’ll thrive in this leadership role. You have such a great life ahead of you, little one.
2013 will be your year of knee surgeries. You’ll have 3 major knee surgeries within a year and three days. It will be the biggest challenge you’ve ever faced. The recovery is hard, excruciatingly painful and long. You’ll cry yourself to sleep the night before the second surgery because you don’t think you can handle going through it all again. But you do great. The third surgery will come as a surprise after the screws break from the previous surgery. This hits you hard because it will cancel your first racing season as a novice coxswain for the University of Minnesota. You can handle the pain, but you didn’t know if you’d still have a place on the team after you recovered.
Luckily, you’ll be surrounded by teammates and an amazing coach who will support you and stand up for you. Minnesota Rowing makes sure to have a spot on the roster waiting for you. Your teammates work hard to continuously support you every year. A spine injury will eventually end your career with the team, but you’ll cherish the time you were able to participate. You’ll run two half-marathons after these surgeries and complete your first triathlon. You are unstoppable.
Little one, pain will accompany you your entire life. I wish I could take that away from you, but you will take it in stride. Your life won’t be defined by Ehlers-Danlos Syndrome. You will push your limits and defy the odds. You will accomplish so many great things and be surrounded by constant love and support from friends and family. Hang in there. You can do this.
I’m so proud of you.
Abbey (age 21)