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The Complexity of Life When You're Parenting a Medically Complex Child

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To “outsiders” who don’t have kids with physical disabilities, the life of parents like myself may seem like a complete mystery. My son has a progressive and degenerative muscular condition called Duchenne muscular dystrophy (DMD). It has undoubtedly changed my way of thinking and parenting.

It’s true, I worry. There’s emotional pain. There’s happiness, too. I have no other choice but to collaborate with doctors, while still being an advocate for my child. Through it all, I remain thankful for every moment I have with my son. In case you’re wondering, this is what it’s like to walk a mile in my shoes with my medically complex child:

It’s when your son can no longer get up from the floor unaided, yet you’re thankful that at 10 years old they’re still able to walk and have no heart problems.

When he crawls up the stairs and has to come down again on his bottom.

When almost clearing the floor when trying to jump is considered “doing well.”

When you encourage them to hop for a North Star Ambulatory Assessment, even though they’ve never done it before and you know they most likely won’t.

When you refuse his clinicians’ suggestion to increase his steroid dose, even though it will help his mobility. You know it will cause more weight gain, therefore requiring even more steroids and trapping him in a viscous cycle.

When every time he complains his back hurts, you worry whether he’s developing another spinal compression fracture.

When you’ve lost all of your original “friends” because they just don’t get it, and the best support comes from people you’ve never met.

When you’re forced to explain their disease over and over again because almost everyone you meet has never heard of it.

When yet another cold is doing the rounds and you pray your child doesn’t get it because you know their weakened immune system means they’ll end up with a chest infection.

When you thank the Lord every night that they’re still with you, because you know of children the same age who have already lost their lives.

The truth is, expectations change when your child has a medically complex and progressive condition.

Still, there’s hope — for another day, for better treatment and for your kids to experience as much joy as possible.

Originally published: March 11, 2019
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