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, “The medications we tried are not saving Emily’s kidneys; she will need a transplant most likely before her fourth birthday this summer.” It felt like the emergency broadcast system had cut into our lives, jolting me from our regularly scheduled programming.

On the cusp of adolescence, Emily should have been pirouetting during recitals, tearing up the soccer field and bike riding with buddies. Instead, at 10, she had double hip reconstruction surgery. Without it, her pain was so intolerable that her younger sister Taylor-Jo would push “Sissy” on a rolling flatbed chair dolly her daddy Joe improvised.

Being sure to grab the medical bag for Emily on our way to one of her weekly appointments, I wheeled her into our white mobility Dodge Caravan. As I drove along Interstate 680, I thought about how Joe had always intended to fix up his old Camaro for Emily’s sweet 16. While her friends hold the luxury of driver’s licenses, Emily holds a record 64 surgeries.

Emily is now 21 — that’s 11 years older than she was supposed to live to be. There are no treatments, no cure. She’ll never hold a job or move out of our home, yet she’s here, living her best quality of life with us. DNRs and wills are in place. They have been for years, as any moment she could be taken from us. We want to be prepared so we can be in our grief when the time comes, rather than making decisions that once seemed unfathomable.

Emily appears to take her fight to survive in stride. She cracks jokes with an uproarious, devilish laugh. “I woke up not dead again today,” she announces, referring to the Willie Nelson song. Thankfully, her love of country music allows her to escape, and for me to see a glimmer of hope in her eyes.

Yet she struggles. Hard. Since October 2019, after another hospitalization for grand mal seizures, her panic attacks have increased. She’s afraid to sleep, petrified she won’t wake. When a mother sees her child with a brave face, knowing they’re in pain, she understands too well there’s far more behind that mask than what they choose to reveal.

Watching this unfold has been excruciating. I hold Emily’s hand, place cold packs on her and lie awake for hours by her side, waiting for the painkillers to kick in as I try to will a soothing voice from the lump in my throat. Witnessing Emily wince in pain, convulse or withdraw from her social life, I don’t always know the words to say or how to help her.

To help myself, I started experimenting with a litany of remedies, including Lexapro, gratitude journaling and Lysa TerKeurst’s book, “It’s Not Supposed To Be This Way: Finding Unexpected Strength When Disappointments Leave You Shattered.” My yoga mat serves as my respite. Expanding my hips, allowing me to breathe fully, the lizard pose brings me a release of emotions and a deepened focus — grounded and aligned at my core, where the belief that we will survive this lies.

Simultaneously, I have crippled myself with fear, worry and anticipation for what’s next. I’ve been living my life in a germaphobic state: washing hands, masking up and avoiding large public scenes for nearly two decades. It’s hypervigilance on steroids; I have felt like I couldn’t escape the germs, the mess, the chaos. Still, our family continues to navigate our little world, in and out of the hospital, no inoculation available against SIOD.

How have I reconciled caring for a child who was not supposed to have lived this long? I haven’t. Imagine mile 25 of a marathon and trying to muster up enough raw physical and mental strength to keep going. What fuels me? Every SIOD child, other kids fighting medical battles, and Emily’s resilience to keep moving forward despite her daily pain and debilitating neurological episodes.

Our home may not be a friend-filled space, but it’s a safe haven, where I am actually the fun mom I always wanted to be: hosting all-night family slumber parties and in-home movie screenings while devouring chocolate chip cookie dough balls. Like for many families, our kitchen has been the main hub for gatherings and giggles — my favorite soundtrack. Yet unlike most moms I know, I’ll continue to stand behind the counter in our makeshift pharmacy of a kitchen, prepping yet another evening smorgasbord of medications for Emily.

Periodically, I’ll conference with the world’s leading expert in SIOD research, Dr. David B. Lewis, professor of pediatrics (immunology) at Stanford’s Lucile Packard Children’s Hospital, to debrief each other on our joint fundraising efforts, including our nonprofit, Little Giants Foundation, and his team’s progress on revolutionary treatment options. I keep faith as my compass.

Several years ago, I had one word tattooed on my inner wrist, my mantra, which I quickly glance at to boost myself in the right direction. This word reminds me to keep dreaming for Emily’s future. Aspire to more for our family. Give hope to families like mine. And it reminds me that when Emily does leave this world, she will have left a magnificent impact on others, passing on her torch of courage. This word is: Believe.

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