The Regression Struggle is Real

25 Jan

Change, like an illness, move, death, or divorce, typically brings about regression in children.

Another facet of change most people aren’t aware of occurs when your child has been in the hospital. The post-hospital stay regression struggle is real.

Believe me, I know firsthand.

When Jackson was treated for Neuroblastoma, he had over 100 days inpatient over the span of 15 months. Each time a hospital stay ended, I had to start all over again with putting him back to bed in his crib, playing with his toys nicely, not hitting when he was mad and eating food I cooked.

His longest hospital stay was over three weeks straight. It was for a stem cell transplant and Jackson was incredibly ill the whole time. When he was “well” enough to go home, he was still incredibly ill. Excited to finally leave isolation, we packed the room up in a hurry and watching his room dismantle caused Jackson to burst into tears. He’d gotten used to his CHKD home and didn’t understand why we were leaving.

When we got home and walked into the house, again, he burst into tears. I knew then that even though we were home, we’d only just relocated our problems. He was still just as sick, just in a location we were more familiar with.

It was going to be a transition.

So why is that?

  1. Everything has changed. There’s an abrupt change from normal life to an unfamiliar medical world and back home. Naps are off schedule. Noises are different. Bedtime is a pipe dream.
  2. Your child is sick. An overnight stay means there was an illness serious enough to warrant watchful nursing care, so healing is still top priority when you reach home. Like Jackson was after his transplant, your child might still be really sick but can safely recuperate at home. Home may be home, but the pressure hasn’t let up yet.
  3. It’s happening to us, too. As parents, we are also going through something: a sick kid. It’s scary! As an easy fix, we tend to cater to our child’s ever whim because it’s something we can control. Everything else is spiraling.

When these three things combine, you get one heck of a regression.

Oh hey! See me waving? That’s me currently hanging out in Regressionville. I’m back here with Abby this time.

With her two hospitalizations in the past month, the return to life has been hard. Her stamina for anything outside our house, like running errands, is low. Just the other day we were only halfway through my list at Target before we were on the children’s medicine aisle, ripping into a new box of Motrin.

(Bubble gum flavor. Not berry. Not cherry. NOT GRAPE!)

Bedtime is a sob fest. Since her stays, she’s developed a fear of the dark and doesn’t want to be alone. “Hey Mommy! Hey Mommmmmmmm-eeeeeeeeeeeee!” she yells from her bed about three times with a new request before she finally falls asleep.

And then again at around 1:45 a.m. for me to come fix her blankets and tell me it’s still dark.

And then again as the sun comes up. “Hey Mommy! Hey Mommmmmmmm-eeeeeeeeeeeee!”

I have no great advice for a post-hospital regression except this: it will get better. (I keep telling myself this) Be compassionate but stick to your guns. Call them out when you know they can do better! For instance, I just went in Abby’s room and told her she was clean, fed, safe, loved and the hallway light was on outside her room. Now, go to sleep.

It’s worked for about 15 minutes.

Goodnight from Regressionville!

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