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Letting Go of Control When Your Child Has Chronic Illness

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As a parent of a child with health conditions, I often find myself perseverating over something that didn’t go right or something that is bugging me about my child’s medical care. It’s easy to get stuck on the things that feel like they are within your power to change.

But then you get a reality check when you are reminded by your child’s suffering of what really stinks — and it’s not the little changes or appointments you didn’t make. It’s the fact that your child will forever be ill, and there is not one thing you can do to change their fate.

As parents, we all tend to try our best to create a fulfilling life for our children. Parents of medically complex children often try a bit harder because we feel the need to continually compensate for all of the things we are very aware our children are missing out on.

One Beanie Boo after a shot morphs into a collection of 400+ because the tasks we ask our child to do never end. We tend to be a bit more lenient about things other parents strictly regulate because we have to strictly regulate nearly everything else about our child’s lives. We could care less if we eat McDonald’s more than once a week because our children are underweight and running in between eight therapies a week. A few extra pieces of candy or some fast food isn’t going to hurt anyone over here.

The things that are hurting our children are already doing a pretty good job of that.

Last night my child woke up in unbearable pain, and all I could do was swallow the pit in my stomach that grows every time I know there is no medicine, tool, surgery, etc., that will take it away. As she gets older, when this happens, the common theme is, “Why do I have to be the one that is suffering?”

Perhaps the most painful part of being the parent of a medically complex child is that I can’t give her an answer. I don’t know why, and I hate that this is her reality. I hate that all I can do is tell it, “Yes, it sucks, and I’m sorry.”

I hate that she has to carry that weight on her shoulders, and I hate that there is not a good answer because she’s right; it isn’t fair.

She’s one of the quietly chronically ill children. If you don’t see her late at night crying in my arms, you would think she is “normal.” If you don’t see the scars across her chest, you wouldn’t know she’s been through more painful situations than most adults.

Her hidden pain is not a blessing for her. It means she has to deal with being treated normally and treated like a sick kid. That is an extremely hard mental state to balance for any grown adult, let alone a child trying to find her spot in the world. And kids and friends — well, they are innocently ruthless even at age 9.

It’s brutal.

So much of being a parent of a child with health conditions is about learning to let go. Letting go of resentment. Letting go of the dreams you had. Letting go of the path you subconsciously created while they are still safe in the womb.

Letting go of control. Letting go of the mirage that your child’s health is up to you. Letting go of your plans and letting go of your weekly schedule. Your life will never solely be up to you to plan again.

But at this stage in the game, we must teach our kids to let go of all of these things again. A salve has not been created that is strong enough to ease that pain.

However, there is strength in numbers. We are not alone. The best thing we can do as parents is work together to calm our kids and lean on each other for support. Because while life is not fair, we aren’t fighting this battle alone.

Getty image by Oliver Rossi

Originally published: January 25, 2023
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