To the Mom of a Chronically Ill Child: I Get It, and I’m Lonely Too

Image Source: Eden Strong

You never expected parenting to be like this, did you?

I sure didn’t.

I had this idea in my head of what motherhood would look like. It was a picture that was painted by everyone I knew, and everything I saw. But it’s not like that for me, because my child is sick.

And when your child isn’t like other kids, you don’t get to be like other moms, do you?

All the plans that I had are now just the plans that I can no longer make. The zoo we don’t visit, the playground we don’t explore, and the puddles we don’t watch our kids jump in. I never thought that family vacations would be something I watched other people do on Facebook, posted by the friends that I had, but no longer have, because my world began to spin differently when my child got sick. Instead, my life revolved around the one who needed me most, while everyone else’s lives moved on.

child in hospital
Image Source: Eden Strong

It’s a lonely place to be in, isn’t it?

I’m lonely too.

When I hear other moms talking about how they wish they had more quiet time alone, I know that they can’t fathom the emptiness of coming home alone without their hospitalized child; when having a clean house means your child wasn’t around to play with their toys, and the quietness is spent looking at barren walls, waiting for school projects that are never hung because your child never makes them. I never imagined that instead of playgroups where I’d trade tips on getting my kids to eat their vegetables, I’d be attending support groups where we discuss getting our kids to take their medications. I beg for the soccer games and birthday parties. I dream of being bored by an everyday routine.

child in hospital
Image Source: Eden Strong

I didn’t know that it was possible to have more doctor appointments than days of the week; days that are often measured only by the dimming of lights on the hospital floor, and hours that are broken down by the meal trays that are delivered and taken away.

I never knew that being “home” meant staying home, away from germs, people, and dangers of the outside world; things that can hurt the chronically ill. It’s when a house becomes a prison, and yet, it’s the only place you want to be, because you get to have your child in your arms — which is the only thing you want.

Except if I’m being honest, I also want the life that I thought I was going to have. Yet I’d still never trade it for the child that I have now.

You are strong, you are courageous, and you are brave. You are doing an amazing job navigating a path that you never asked to be on.
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I’ve cried myself to sleep more times than I can count, after holding back tears more times than I care to remember. Doing what’s best for your child isn’t always something that kids understand, and having to be in that position at all is something that even most adults can’t understand.

But I know you get it.

And if I told you that when I am alone, I scream at the ceiling at the top of my lungs and beg the universe to tell me why, why my child, why my baby, I know you’d understand that too.

Because we know what it feels like to hold our child’s hand and assure them that it will be OK … while trying to convince ourselves that it actually will.

I know you get it, because you are my fellow warrior.

You are a soldier in a battle that is not yours to fight, but you are giving it everything you have because your child is the only thing that matters. You are strong, you are courageous, and you are brave. You are doing an amazing job navigating a path that you never asked to be on.

You are exactly where you need to be. You’re seen by the one who needs you most — your baby.

You’ve got this, because despite everything else that is going on, you are a mom to an incredible child, and because of that, you show up.

Every day you show up, and I see it.

I see it, because I’m here too.

You are not alone.

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