My 21-Year-Old Daughter Was Not Supposed To Live This Long. Here's How I Keep Us Both Going.

Since Mother’s Day 2008, I’ve stood in my kitchen prepping evening meds, surrounded by syringes , seizure medications and predigested baby formula for Emily, my young adult daughter.

One August night, she maneuvers over, using her hot pink crutches to check on her evening order of chicken bouillon, her go-to menu choice. Emily’s medications and chemo have altered her taste buds dramatically, causing a lack of nutrition intake by way of mouth, which in turn requires her to have nightly tube feedings.

When Emily was 3, she went into kidney failure. My husband, Joe, was thankfully a match and gifted her one of his kidneys. We thought we were in the clear, but not even a year later, Emily was diagnosed with Schimke immuno-osseous dysplasia (SIOD), a rare, fatal, multisystem disorder characterized by dwarfism. This particular genetic disease is so rare, it affects only 10 children in the U.S. and 50 kids around the globe.

Until recently, the only people aware of SIOD were the families and friends of the children afflicted. Since sometimes you need a little humor when you are told your child has a life expectancy of 9.2 years, Joe and I wisecracked, “We could create a support group, but who would attend? You, me, and the grandparents?”

Washing another load of canisters for mixing formula, I thought about how, well before surgical masks, hand scrubbing and crowd avoidance were a part of our medical journey, I had a dream. I visualized being the fun mom, baking devil’s food cake my kids and their friends would snarf down after school. They’d help Cali, our calico, birth kitties; roast s’mores over the firepit; graze in our raspberry patch in Gretna, Nebraska.

Then, WHAM! Dr. Lovell, our pediatric nephrologist, reported,