Christmas looks different

for parents of kids with rare diseases. And instead of celebration, it’s often a difficult time. Visiting relatives with a child who is wheelchair-bound, or has a feeding tube, or with behavioral difficulties has to be planned, and packed, and possibly scrapped.

Christmas, like birthdays, is often a reminder of skills lost, not milestones reached. Johnny isn’t getting a bigger bike this year, he might be playing with teething toys instead of Little People. Katie no longer “oohs” and “aahs” at the Christmas tree and maybe even tries to knock it down; instead, she stares contentedly at the lights, as drool slides down her chin, waiting to be wiped with the custom bib made by her mom.

So in honor of our family and so many others fighting this battle, and many who are looking back in reflection or possibly facing their first year without their child, I offer a candid look into what many of us want for Christmas. I hope that friends and family will give us what they can toward these things – hope, and understanding, and sometimes just a little helping hand.

A Rare Disease Parent’s Top 10 Christmas Wish List

10.     An appointment where I walk in and the doctor knows more about my child’s condition than I do.

9.      The ability to watch TV shows and movies where people die without falling into a puddle of tears afterwards.

8.      A magic “what is wrong” detector that I can wave over my child when he can’t tell me what is hurting.

7.      A hat that disperses all sneaky thoughts of the life after our child dies.

6.      A year with no funerals.

5.      Treatments that don’t hit our insurance out of pocket max every single year (but hey, having a treatment AT ALL is #1 on many parents’ lists).

4.      A radio station that plays no music about kids growing up, dancing at their wedding, or Christmas shoes.

3.      I want to drive a convertible, not a handicapped accessible van with a “go bag.” Or, I’d rather it be a Jason Bourne-type of go bag, and not a we’re-going-to-be-stuck-in-the-ER-all-night-and-probably-the-hospital-all-week-so-we-better-have-diapers-clothes-toiletries-and-snacks kind of go bag.

2.      In fact, I’d really like to have a locker at the hospital, kind of like what you have at the gym. One where I can keep all my necessities, grab a private shower, and maybe even work out. We’re probably at the hospital more than the gym anyway – better investment.

1.      To watch my child grow up.

That is what I really want for Christmas.

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Last modified: April 12, 2017

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