Since Mother’s Day 2008, I’ve been in my kitchen getting evening medications ready for my daughter Emily, who is now a young adult. I’m surrounded by syringes, seizure meds, and special baby formula.
One August night, Emily uses her bright pink crutches to check on her favorite chicken bouillon. Because of her medications and chemotherapy, her taste has changed a lot, so she needs tube feedings every night to get the nutrition she can’t eat.
Emily was diagnosed with kidney failure when she was just 3 years old, and my husband Joe donated one of his kidneys to her. We thought everything would be okay, but less than a year later, Emily was diagnosed with a rare disease called Schimke immuno-osseous dysplasia (SIOD), which affects only about 10 kids in the U.S. and 50 worldwide. This condition is serious and has a very short life expectancy.
For a long time, only friends and family knew about SIOD. When we heard that Emily might live only about 9 more years, Joe and I joked, “We could start a support group, but who would join? Just us and the grandparents?”
As I washed more containers for mixing her formula, I remembered my hopes of being the fun mom—baking cakes, helping the kids with our cat, and making s’mores in our backyard.
Then everything changed. Our doctor told us Emily’s kidneys weren’t responding to treatment and she would likely need a transplant before her fourth birthday. It felt like our lives were suddenly interrupted.
At 10, instead of enjoying dance recitals or playing soccer, Emily had to have double hip surgery because her pain was so bad that her sister would push her around on a rolling cart.
As I drove Emily to one of her weekly appointments, I thought about how Joe wanted to fix up his old Camaro for her sweet 16. While her friends are getting their driver’s licenses, Emily has had 64 surgeries.
Emily is now 21, which is 11 years longer than doctors expected her to live. There are no treatments or cures for her condition. She’ll never be able to hold a job or move out, but she is still here, living her best life with us. We have do-not-resuscitate orders and wills ready because we know any moment could be her last. We want to be prepared so we can grieve when the time comes, instead of making tough decisions.
Emily seems to handle her fight for life with a sense of humor. She often jokes, saying, “I woke up not dead again today,” referencing a Willie Nelson song. Her love for country music brings her joy and gives me hope when I see that spark in her eyes.
But she struggles a lot. Since October 2019, after being hospitalized for severe seizures, her panic attacks have increased. She is scared to sleep, worried she won’t wake up. As a mother, seeing her brave face while knowing she’s in pain is heartbreaking. I understand there’s so much more she’s not showing.
It’s been painful to watch her suffer. I hold her hand, apply cold packs, and stay awake by her side, waiting for her pain medicine to work while trying to comfort her. When I see her in pain or withdrawing from life, I often feel lost and don’t know how to help.
To cope, I’ve tried different remedies like Lexapro, gratitude journaling, and reading Lysa TerKeurst’s book, It’s Not Supposed To Be This Way: Finding Unexpected Strength When Disappointments Leave You Shattered. My yoga mat has become my safe space. Poses like the lizard help me release emotions and find focus. In those moments, I feel grounded and hold onto the belief that we will get through this.
At the same time, I’ve been overwhelmed by fear and worry about what’s coming next. For nearly 20 years, I’ve lived in a constant state of being germ-conscious, washing my hands, wearing masks, and avoiding big crowds. It feels like I can never escape the germs and chaos. Still, our family keeps going, dealing with hospital visits without any vaccines for SIOD.
How do I cope with caring for a child who wasn’t supposed to live this long? Honestly, I don’t know. It’s like trying to push through mile 25 of a marathon, gathering every ounce of strength to keep going. What drives me? The courage of all the kids with SIOD and others facing health battles, and Emily’s determination to keep moving forward despite her pain.
Our home may not be filled with friends, but it’s a safe space where I can be the fun mom I always wanted to be. We have family sleepovers and movie nights while enjoying chocolate chip cookie dough. Our kitchen is the heart of our home, filled with laughter. But unlike other moms, I’m often behind the counter preparing Emily’s medications.
I regularly connect with Dr. David B. Lewis, a leading expert in SIOD, to discuss our fundraising efforts and the progress on new treatment options. I hold onto hope as my guide.
A few years ago, I got a tattoo of one word on my wrist to remind me to keep dreaming for Emily’s future. This word inspires me to hope for our family, support other families like ours, and remember that when Emily leaves this world, she will have made a significant impact. That word is: Believe.
