Sometimes, doctors are the worst.
Danny was born ten weeks prematurely, and he spent his first six weeks in the NICU.
After being discharged, we continued to follow up at our local hospital in a specialized clinic for premature babies.
Danny was not diagnosed with anything early on, and we were told at the hospital that he was one of the lucky ones.
We were told that he would develop perhaps a bit more slowly than other babies, but that he should be mostly caught up by his first birthday.
Doctors are sometimes the worst for how they talk to you when none of these things are true anymore.
Danny’s diagnoses unpeeled like an onion his first year.
We had a few big blows; however, we were always kind of anticipating the news.
We certainly experienced grief and loss, but my husband and I committed early on that we would focus on who Danny was, and not what we had expected him to be.
Some days this was easier said than done, but throughout all of the difficult times, we also had a lot of fun.
Danny melted our hearts with his smile and laughter.
Our family came together mightily with us, and we loved and celebrated Danny.
Then we would go to the clinic.
We would share stories of his tenacity, his surprising awareness, and his gains in therapy.
Our doctor would nod politely and smile.
One appointment, after I shared a story about how Danny seemed to be saying “dada” at eleven months, she said, “Well, with some training, maybe he can learn to use a switch someday to communicate.”
I felt like she punched me in the stomach.
At eleven months, she seemed to be communicating that I was deluding myself into thinking that my son was talking.
At eleven months, she seemed to have written off that he would ever have verbal communication.
At eleven months, she seemed to say that all I could hope for was that he would learn to push a button someday.
There was the Danny at the clinic.
This Danny had an abnormal MRI, spastic, quadriplegic cerebral palsy, a possibility of septo-optic dysplasia, and cortical visual impairment.
This Danny seemed to exist entirely in a doctor’s file, in medical reports, and on paper. Then we had our Danny. Our Danny who loved to read books, who delighted in learning about animals, and who noticed every person and smiled.
The doctor’s Danny has diagnoses.
Our Danny is bright, funny, and happy.
The doctor’s Danny needs additional testing.
Our Danny will defy these results.
The doctor’s Danny has limits.
Our Danny is limitless.
Have you ever flown with your disabled child?