I colored the pirate with a chunky blue crayon and rarely looked my friend in the face. I paid careful attention to the coloring sheet as if it mattered to the structure of my life, as if I weren’t sure that I could hold it together without the finished picture. I still ended up wiping away tears. 2016 has been the year that involved crying over a doctor at Toddler Time.
In January, we rolled off the ambulance after two and half hours and entered the children’s hospital through the back doors to the emergency room. It was not the way I planned to spend my weekend but nevertheless, at seven on a Friday night, I thanked the ambulance workers and took Micah down the hall to the bathroom. We rounded the corner and the ER doors burst open as Micah’s metabolic doctor came in. He took a long look at Micah and started asking questions, giving orders, and hunting down the nurse. That’s why we transferred to the children’s hospital.
As we were settling into our room the ER nurse commented how unusual that was: genetics never comes to the ER. I breathed a prayer of thanks for how, once again, Andrew had gone above anything I ever expected him to do.
When we became parents we weren’t expecting the experience of a rare disease. We weren’t anticipating spending a month in the NICU or learning how to replace g-tubes or tracking protein counts every day. Despite how glad we were to keep our baby, it was a difficult transition into what is a difficult season on its own.
The very first time we met Andrew, Justin asked him point-blank if Micah could live with Isovaleric Acidemia. No one had answered that question for us, telling us only that Micah was very ill. Andrew said to give it time, let them care for him, and see how he responded. A normal life was a very good possibility if we could get past the shock of the metabolic crisis.
When Andrew first told us that he was moving back home and transferring to a different hospital, I was a little shocked at how upset I was. I knew God would take care of Micah and I was heartbroken over the news all at the same time. After a couple of days I realized that I knew Andrew had our backs. I never felt like I had to do my job and the doctor’s job at the same time. I never felt like I had to make guesses about what was the right step for his medical care. It was like losing a leg on your three-legged stool.
Some people are good at what they do because they are talented, naturally gifted in that area. Some people are good at what they do because they work hard at it, accomplishing more simply by putting in the hours. Some people are good at what they do because they care and you know that. Andrew is good at what he does because of all three of those. And in return, he matters to us, not just as Micah’s doctor, but as a person.
The last time Micah was in the hospital he actually stayed locally instead of getting transferred to the children’s hospital. It is a glad sign for the future that it went smoothly but I spent several hours in the ER texting on and off with Andrew, keeping him updated on how Micah was feeling and the results of the lab work and what the doctor was saying. We overruled a decision that the hospital staff wanted to make and they graciously deferred to our experience. Andrew said that was the first time he had been pleased with how another hospital cared for his patient.
He’s called us on vacation, texted us on Christmas break, given advice as we’ve navigated decisions. He was one of the first people to know we were pregnant with our other two boys and helped us plan the prenatal testing to see if they had IVA. Our youngest son’s middle name is Andrew. He’s made a permanent mark on our family and I’ll think of him every time I look at Micah.
God has placed people in our lives over and over again who have helped us care for and love Micah. Andrew was one of the first. There’s nothing we could do that would thank him for what he has been to our family.