Strange milestones in parenting a medically fragile chid

When Micah was a baby, he had to be fed every three hours round the clock. 9pm. Midnight. 3 am. 6 am. I was unaware that sleeping all night marked my life with normalcy (and sanity) until alarms sounded all night long. Three cans of formula sat by a scale on our kitchen counter and every night, I would measure and weigh and mix a batch of formula for the next 24 hours. Because I was not sleeping and I was overwhelmed by having a child with intense medical needs and had no idea what the future would bring, I should have been in therapy. Instead, the ritual of the formula was marked by darkness. In my memory, I performed this act in a dark room on the brink of exhaustion, though in reality our first small apartment was well-lit and comfortable. The exhaustion part was true though.

Micah had a g-tube and, for a handful of medical reasons, I fed him his formula through that g-tube for 18 months before he was able to drink it on his own. Even with that reality, as he got older and older, the frequency of how often he had to be fed decreased. Life felt more normal. I slept more. I stopped waking up in the middle of the night, panicking over if I had missed a feeding or dismayed that my alarm would be going off in 20 minutes. 

When he was older (a toddler or a preschooler), we changed his formula. It came pre-packaged in a container similar to a juice box but bigger. He drank two of them a day, one in the morning and one in the evening, and my own daily routines shifted with that change. I felt as though I had gained an hour instead of just the fifteen minutes it took to make the formula.

I’d have to go back and look at insurance records to know when we swapped to that formula. But he used it for years. The company that makes it is family-run; they started because their own child needed a medical formula. Now they provide formula for many other families. A couple of years ago, they took the formula off the market to revamp it. At the time, Micah was the only person using it and they continued to make it for him and not bill us until they had a new product available. 

That new product came on the market a few months ago and Micah has slowly finished his supply of the old milk, drinking one every morning while adjusting to his new milk at night. This morning he drank the last one. I snapped this picture of it: the end of a long era of parenting and a snapshot of marking time as a parent. 

I’m grateful for science and I’m grateful for my son.