Those of us who work with kiddos in the special needs community understand that Christmas and other holiday bring a different level of concern for some families. They would happily give all the presents in the world for other intangible gifts. Earlier this week I came across this post which helps to illuminate the additional burdens that parent’s of kiddos with extra needs have throughout the year.
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.
Here is the link to the original article.