I took Nathan to a new specialist last month. Remember that ol’ passing out thing he does from time-to-time? Well, I’m still on a mission to find out what is causing the problem. I’m much less optimistic and aggressive at finding the cause than I was initially, but it occasionally keeps happening, so I keep searching.
Because we have an amazing pain and palliative medicine doctor, he was able to find a way to get us in to see a GI doctor who typically only sees patients who are part of her clinic. Nathan is not. I am amazed by the favor bestowed on him by physicians, and the Lord Himself, when it comes to orchestrating difficult appointments like these.
This new doctor spent over an hour with me. She sat down and said, “Tell me the story of Nathan from the beginning.” Wow, the beginning. So back I went into the far reaches of my memory to try to help her piece together the mysterious ways God made his body. She did a lot of listening, thinking, writing. Listening, observing, writing. I appreciated her approach because there was no rush to quickly treat his symptoms and get on to her next patient. She had no immediate answers, only possible suspects like abdominal epilepsy or something strangely affecting the vagus nerve (which we had previously ruled that because his heart rate goes up, not down). This doctor is long-suffering and willing to continue exploring the reason why he goes unconscious.
At the end of the visit she said, “He’s doing well. I like how he’s playing and interacting with his brother. He’s clearly communicating with you and curious about his new environment.” I told her that was helpful to hear because I get so discouraged about his development. To me it seems like he’s not progressing at all. Then she compassionately looked me in the eye and said, “You are on a different timeline. A slower timeline.”
I’ve been thinking about her comment ever since. First of all, I am not a slow timeline person. I’d rather be on the fast track. I like progress and starting new skills and learning new things and breaking new boundaries. Slow is not in my DNA, but it seems to be quite a part of Nathan’s. The more I thought about the different, slower timeline, the more I appreciated the way she reframed my idea of developmental delay. Developmental delay is such an emotionally charged phrase that means something different for every child affected. Nathan hasn’t stopped developing. He does regress and lose skills sometimes, which is frustrating, especially when it comes to eating. Sometimes those skills come back, sometimes they don’t. But overall it’s just slower and incredibly inconsistent. Nathan’s developmental timeline comes with peaks, dips, and loopty loops. Nathan is writing the rules here. No one else. Not even anyone else with developmental delay or Cri du chat syndrome.
Maybe I can get used to slower. Maybe I must get used to slower.
Jesus said, “But many that are first will be last; and the last, first.” So why do I see this life as a race to finish accomplishment after accomplishment, meeting milestone after milestone? There is value in slowness. In respecting a person and where they’re at. To not always be about getting more done, but about being more present.
But many that are first will be last; and the last, first.” – Matt 19:30
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
Also be sure to check out my list of Favorite Books on Disability!