This Rare Day

This morning, we turned off Collin's sleep machines and pulled him out of bed earlier than normal. He had an 8:00 clinic appointment, an exception to our no-appointments-on-Friday rule. Kyle carried his lean little pajamaed body to the bathroom; his hair stood up in a dark fuzzy poof except for the indentation from his BiPAP mask across the top of his head.

On the way into the city, we listened to NPR and some classical music while Kyle gave Collin his breakfast via syringe through a feeding tube in his stomach. Beef, strawberries, pineapple, three oils, and a handful of supplements created an orangish puree precisely mixed to fight seizures.

At one point in clinic, eight therapists and medical representatives observed Collin. At another, two doctors quizzed me at the same time while another worked with Collin and spoke with Kyle. We left with orders for x-rays, three follow-up appointments, two wheelchair modifications, and a knee immobilizing brace.

Once we got settled at home and sent Kyle off to work, I put on Collin's two-piece orthotic braces and manhandled him into his stander. He played his keyboard (All the rockstars play keyboards standing up, I told him) while I did some prep for the Valentine we were planning for his cousins. Collin pushed the tissue paper onto the glue (helpful) and scattered paper hearts on the floor (not helpful) while his favorite Pandora opera station played in the background. 

At nap time, I pulled his oxygen tank out of the closet, turned the dial to 1/4, tested the cannula on my lip, and fit the tips in Collin's nostrils. I turned him on his side and he stopped wiggling when I nestled his Cookie Monster between his arms. After double-checking the video monitor to make sure I could see his face, I whispered into his smiling cheek and tiptoed out to my writing desk.

In the afternoon, Collin kept me company in the kitchen while I baked muffins and we listened to an audiobook. I helped him practice eating pureed prunes by mouth. We read a book about lemonade in winter. I hung him upside down on the inversion table to slow his scoliosis and made sure he spent some time prone on the floor to stretch his lower abdominal muscles and hopefully encourage some pushing with his arms or movement of his body.

After dinner, we loaded the wheelchair in the back of the van and headed to the grocery to buy supplies for Valentine and Birthday weekend. Collin loved the colorful produce department and the whole fish sitting in baskets of ice at his eye level, but the noise and lights got to be too much for him, so we hustled home.

Then at bedtime, after the blood glucose and ketone check but before the growth hormone shot, we all crawled in Collin's twin bed and read out of our three regular books: Just the Way I Am: God's Good Design in Disability, Farts Around the World, and a book of Billy Collins poetry (currently Picnic, Lighting).

Just another day living alongside rare disease and disability. It's our normal.

This wasn't the life I expected and it hasn't been easy getting used to it. But it's mine and I'm living it as fully as I can, one day at a time.