To My Children, From Your Mother With Ehlers-Danlos Syndrome

Dear kids,

My favorite part of every day happens long after you’ve fallen asleep. I quietly slip into your rooms and watch you doze. A smile creeps over my face as I catch sight of your legs dangling over the edge, your arms clutched tightly around a stuffed toy. I don’t pick you up and rock you back and forth as I would like. Sadly, my elbows won’t allow me to do that. Instead, I slowly bend down (if my body will let me) and place a soft kiss on your warm, smooth cheeks. Some nights, when my back won’t allow me to bend, I kiss my hand and press it lightly to your cheek. When I struggle to walk, I hobble as close as I can on my crutches and blow my kiss in the air, hoping it doesn’t miss its mark along the journey.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

As you both know, I have hypermobile Ehlers-Danlos syndrome (hEDS). This is an invisible illness, which means I look OK from the outside, but inside my body is screaming in pain. My joints are dislocating or subluxing (partially dislocating) and my tendons are tearing for no apparent reason. I can’t remember the last time I slept through the night.

People who pass me on the street would never know anything was wrong. If they saw me using my crutches or wearing one of my many braces (wrist, ankle, elbow or knee), they might think I hurt myself playing sports. They’d never guess that my body hurts in a way they couldn’t even imagine. When I tell them I can’t eat gluten, dairy or garlic, they look at me like I’m high-maintenance or jumped on the trendy-eating bandwagon. They could never dream of the after-effects I suffer from ingesting these ingredients. When I say I have to sit down (because I feel like I’m going to be sick or faint from standing for too long) they roll their eyes in disbelief. I have POTS (postural orthostatic tachychardia syndrome) as well, which means my blood pressure is super low and jumps by 34 beats as soon as I stand up, hence the dizziness.

I know it’s not easy for you – having a mom who can’t always play. I know there are days you begrudge the fact that you have to do extra chores around the house (like lifting the groceries, laundry basket and garbage). I know you hate taking the school bus when I’m unable to drive. Trust me, I hate these things, too – maybe even more than you do.

I hate having to opt out of backyard fun, balloon volleyball in the basement and board games at the table. I watch you ride off on bikes with your father and my heart literally aches with a longing to join in. What I hate even more than being a bystander, though, is the look I see in your eyes when I, once again, have to say “not today.” I see disappointment cloud your face even though you’ve tried so hard to hide it. I see hurt in your eyes as the twinkle quickly disappears. I’ve lost track of the number of times you’ve asked: “When will your arms get better? When will your hip stop hurting? When will your back stop being sore? Will this surgery finally make things OK so you can finally play baseball with me?” You’re so brave when I answer as I always do, “I’m not sure, but hopefully soon.”

In my mind, my body can do everything we all want it to. It can run for miles, swim front crawl, throw a baseball and chase you during a game of tag. In my mind, my elbows allow me to brush your hair, pour the milk into your cereal and pick you up for a piggy back. In my mind I can always say, “Yes, let’s go play.”

In reality, most of these things are beyond my ability right now, but that doesn’t mean I won’t have good days where I can kick a soccer ball back and forth. It doesn’t mean I won’t push myself on the medium days to throw a baseball towards your glove, even if I have to pay for it with pain later. As for the bad days, of which there have been too many lately, I need you to remember that I love you more than you think possible. I may not be able to play tag on those days, but I can cheer you on enthusiastically from the sidelines. And no matter what type of day it is: good, medium or bad, I will always find a way to give you a goodnight kiss.