10 Things Parents of Children With Rare Diseases Really Want for Christmas
Christmas can look different for parents of kids with rare diseases. Instead of celebrating, it can often be a difficult time. When visiting relatives with a child who is wheelchair-bound, has a feeding tube or has behavioral challenges, the trip needs to be planned and possibly scrapped.
So in honor of our family and other families (and others who are 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, we just need a little helping hand.
Here’s 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’s hurting him.
7. A pair of rose-colored glasses, so I can look forward to the future instead of worry about what it holds.
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 number 1 on many parents’ lists).
4. A radio station that doesn’t play 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. It’s 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.
This is what I really want for Christmas.
A version of this post originally appeared on MelissaHogan.me.
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Melissa is a lawyer by profession, a writer by passion, and an advocate by necessity. She is a mom to three boys, one with Hunter Syndrome. She lives outside Nashville, Tennessee where she writes at melissajhogan.com on her back porch. She founded Project Alive, now a leading multi-million-dollar Hunter syndrome research and advocacy foundation, and currently consults on clinical trial design and patient outcomes. She has also lived with the chronic pain of CRPS for 10 years.
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