Today the pediatrician asked me about how and when Jack was diagnosed with his syndrome and with autism. Apparently, in their practice which encompasses the entire valley, two more patients now have Macrocephaly Cutis Marmorata Telangiectasia Congenita Syndrome.
Whaddya know, it’s big time now.
I recounted the story of figuring out Jack. We talked about pediatricians and specialists and office/hospital support staff who are either a) irritated by special-needs families who don’t fit neatly in little boxes or b) helpful and caring about special-needs families & who don’t expect people to fit in little boxes because boxes are silly and these folks are here to assist in a real way, however necessary.
We talked about the surgery schedulers at the children’s hospital who expressed annoyance at toddler Jack playing with the same electronic toy over and over for several hours (the surgeon got behind in his queue of surgical cases) in the pre-op waiting room while Jack played quietly, fasting.
We talked about the pediatric dermatologist who spent less than three minutes in the exam room with us, her hand on the doorknob the entire time, before leaving and having the residents explain what Cutis Marmorata Telangiectasia Congenita meant.
There were other vignettes like these, but they make me glum when I think about them. I told them to the pediatrician, and now I’m done with those stories.
We also talked about Dr. P, our pediatric ENT who routinely cleans the gunk out of Jack’s sickly ears, gives us hope that they will improve eventually, and always acts genuinely pleased to see us. We talked about Dr. H, the pediatric gastroenterologist, who was the first person to ask me about Jack–not his medical condition or his behavior–but rather his personality and his strengths. Appointments with her are fun and Jack-affirming. Dr. C at the orthopedic children’s hospital treats our family like the highlight of her day, like we are a fun family, not a problem family.
While I talked, Dr. M listened and then found fluid draining from Jack’s cursed left ear. We left his office with stickers in hand, a plan for treatment and prevention, and a sense of mutual understanding about what people like Jack and me really want.
Here it is, we figured it out.
The thing that people want, especially when they are sick and struggling (or watching their kid sick and struggling) is this: just kindness.