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When You're the Family of a Chronically Ill Child During the Holidays

It’s 4:30 a.m. and I am sitting here watching my son, Isaiah, breathe. Just breathe. Because that’s about all we can do right now – just keep him breathing – which in some moments requires everything we’ve got.

With the Christmas episode of “Saving Hope” playing in the background and me misty-eyed like all “Christmas miracle” episodes make me this time of year, all of a sudden his oxygen levels dropped. I looked at his face, eyes wide open, flailing his arms in a seizure that scared me. He was fighting his BiPAP mask so hard that he couldn’t catch his breath, which turned into a scary seizure. For most people any seizure is scary, but just as parents know their child’s cries, we know his seizures.

This one scared me. I threw off his BiPAP mask and threw on a cannula as quickly as I could and scooped him up and just held him against me and told him he couldn’t do that. Tears welled up in my eyes and I remembered the fear — the fear that sits in the back of my mind every day but surfaces in moments like this. The fear that everything might not be OK and that this is real. I saw the fear in his eyes when he couldn’t breathe, and it was the same fear I felt in my whole body in that same instant.

He settled on my chest with his face nestled on my shoulder, close enough that I could kiss him, which turned into me kissing his cheek every few seconds. He quietly whimpered on my shoulder every few breaths he took, not a sound of pain but almost of confused relief — like he knew it would be OK. I am not sure my heart felt the same way because I cried.

I thought about the families that share that same fear. I thought about the hospital. I can name a million and one reasons why I don’t want to go to the hospital, and I am lucky enough to have the equipment I need and doctors that trust me to handle some of it on our own. But there are other families in hospitals right now facing that same fear. Families of chronically ill kids that won’t show the fear even though it’s always there, families that are lost and scared because of the situation they weren’t prepared for. Parents who are staying brave for their kids, and kids who are staying brave because they don’t want to worry their parents. Parents who are worrying anyway. And the unforgiving Christmas sentiment of being home for the holidays with family and friends, surrounding a tree with gifts and food.

The TV show was still playing on the laptop in the background. Christmas miracles were wrapping up, and I heard one of the characters say, “No act of kindness — no matter how small — is ever wasted.” I thought about all of the acts of kindness that have been done for us this year. To be honest, I can’t even begin to tell you about all of them because I don’t know half of them. I believe God moved silently behind closed doors for us so many times this year. And then there are the daily kindnesses. Now here we stand during the holiday season, and all my 8-year-old daughter can talk about is getting bears and books for kids in the hospital at Christmas. She says it’s because it isn’t fun to be there, especially on Christmas, and she just wants to give them a present to make them smile.

She’s a smart girl. I think as much as I try to hide the fear, she sees it and most likely feels it, too. And she has found a way to honor the Christmas spirit by turning that fear into something helpful for those families that also experience those same fears.

I am so proud of her but so scared that we are going to spend Christmas in the hospital. I am going to be here, by his side, holding my breath until he is breathing better on his own again. And maybe distracting myself from my own fears by helping my daughter alleviate hers with her act of kindness.

I would give anything this Christmas (and every Christmas) to be able to wipe the fear away, to take away the illnesses and replace them with health and prosperity. Until then, I am going to just get back to holding his head on my chest and watching him breathe.

Follow this journey on Living With Superman.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness during the holidays. What would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.