I’ve shared before that I’m a literal person. When I was pregnant with my first, I devoured the books and took the words to heart. When I was in the hospital at hour 17 and uttering, “I can’t do this anymore,” I got excited. To me it meant that I started transition, the 20-45 minute process before delivery marked by feeling you can’t go on.
My transition was nothing like the book. Three hours and an emergency c section later, I wrote my own story.
Our second delivery and her chapters were even more topsy turvy. A jaundiced baby, we had no idea she had congenital hypothyroidism. When the newborn screenings returned, we had her re tested in case of a false reading. Thing was, the diagnosis was real. The receptionist never called us nor looked at her inbox to see the prescription for our child. By the time we were all on the same page, our baby lost 8 weeks of critical medication.
Back then we were sat down and told to prepare for a life with not just developmental delays, but likely retardation. Hypothyroid babies tend to have speech delays. Then, she had setback after setback, so physical therapy started and we were prepared for all kinds of scenarios.
I wanted all the bad news to end.
Once she left that horrific first year, a lot of things stabilized. She had years of therapies, but when it was time to start kindergarten I remember the Special Ed rep for the local school district asking me what my goals were.
I listed for years that she would reach all these goals and be dismissed in a certain time frame.
We’ve seen such progress. She’s in a mainstream class where her grades are A’s and B’s. She sings and dances through ministries at church. But in the last year or so we’ve added specialists to the doctor cocktail with new diagnoses, treatments, and goals.
This year where we will sit down and talk strategy for middle school, I am finally ready to let go of something I held on with a fierce grip—an end date.
I struggled to define our situation because special needs to me meant there might be no mobility or verbal communication. Perhaps therapies and appointments were daily. That was a season for us. Yet, I also had to come to terms with the need to have an end date for everything. Even with progress, there are struggles. She has trouble on stairs. She can’t ride a bike. There are short term and sequencing issues, along with a lot of physical things we pay attention to. Daily medicines. I had to come to peace that puts us in a special needs umbrella, and that’s okay.
It’s still a challenge. I feel guilty because we are not a family in and out of the hospital or in daily therapies, yet I yearn for a day where there would be no medicines, watching out for things, having appointments and making plans. Unless God chooses to heal her, we will have these things on our plate.
No earthly end date.
And I’m finally okay admitting that.