Challenging lives are challenging. Okay — all lives are challenging, but add special needs and life does get more complicated.
Our family is lucky for a ton of reasons. The first is always SMILES. Jack is happy and that’s pretty amazing. He has every right to be frustrated and miserable and angry, but he’s not. All those people who bitch about headaches and hangnails (myself included), should learn a thing or two from our boy. He wakes up with a smile and goes to bed with a smile. THAT makes being around him (even changing his diapers) pretty darn wonderful. His smiles are contagious.
There is also a whole lot of DUCT TAPE that holds our family together. Some of it is made up of stuff. I know that such things should never be mentioned out loud, but sometimes stuff makes things a little easier – iPads, vacations, Buddybikes, super cute diaper bags. None of them make challenges disappear, but it can make those challenges easier to look at.
Stuff is fun, but the most important DUCT TAPE — the real glue that’s held us together — has been the people in our lives. From the teacher that helped us search for a diagnosis, to the doctors who dove in to saving Jack, to the nurses that held us together during the horror of transplant, to the family who is always here for us, to the teachers and therapists who have helped rebuild and teach us how to adapt, to the test earlier this month that determined that ALD is not going to mess with my grandchildren*, and to our friends who – what haven’t they done?
We are grateful for a lot this season. I got a little lost in brining, mashing and setting the table that I almost forgot to thank the universe for all our gifts. Now that the universe has been notified, I will continue cooking.
What are you grateful for?
* I am aware that Anna is YEARS from having children. Years from even thinking about relationships or even holding hands.