I’m going to tell you a secret. The holidays can be incredibly stressful for a parent of a chronically or terminally ill child.
It’s because a lot of times we feel like residents on the Island of Misfit Toys. You know that story, where Rudolph the Red Nosed Reindeer lands on an island of toys that are a little different. The Charlie-In-the-Box, the spotted elephant, the train with the square wheels, or the water pistol that shoots jelly. They are toys that are different enough to be pushed to the sidelines, in favor of a more sparkly Christmas.
How do we feel different?
It’s the Christmas Cards, for a start. The perfect pictures. The smiles. The letters that accompany them, telling of milestones and trips and accomplishments. Don’t get me wrong, we LOVE that you are doing so well, that your kids are doing well, that you’ve done these amazing things. But our child’s milestones might be different. Our accomplishments, though amazing for us, seem delayed to some. We don’t know exactly what to write about, what to share. We feel a tiny bit of shame in this, the mix of envy and embarrassment, and the knowledge that a few of our kids won’t be around next Christmas. We don’t want to bring you down with us, but for some of us, this is a reality.
Then, there are the families that spend the holidays in the hospital, and though the staff does its utmost to make the time special, the truth is that it’s not home, it won’t be home, and it’s the last place that most people want to think about on Christmas. That’s the reality.
I recently sat around with other parents of chronically ill kids, and this is what we talked about, the wanting to be happy for others, the burden of making the holidays special, and the feeling like you’re always not measuring up to the ideal. For me, here is a small example. Wendy takes medication three times a day (besides her insulin.) We are fastidious about giving it to her. We have a weekly pill organizer, and she never misses her morning dose.
Except on Christmas.
For the past three Christmases, she’s missed her morning dose, because we get up earlier and open presents. Then there’s a rush for coffee and breakfast, and cleaning up. We usually realize around 10 am that we’ve forgotten. There is always guilt with forgetting. There are parents who have kids in wheelchairs and on breathing machines. Parents who have to do PT on their kids’ chests. Medical care happens even on the holidays. Parents are vigilant even on the holidays.
We love our kids. We love our life. And we love the holidays. But sometimes when we smile and say we are stressed, or busy, it’s more than that. Sometimes it’s that we realize if we told you more it would ruin your holiday mood, and you deserve to be happier during the holidays.
If you’re really interested, ask more questions.
In the meantime, enjoy your holiday, and your family, and the season.