Why Life With My Daughter With Mitochondrial Disease Is About the Journey

If I could describe my life as a mom of a child with a terminal diagnosis, it probably wouldn’t be what you’d expect. There are countless doctors’ appointments, therapies, hours on the phone ordering medical supplies and several trips to the pharmacy each week. I spend days researching each new symptom as it develops and endure many sleepless nights worrying about my daughter’s future, her health and her quality of life. But my days aren’t just filled with to-do lists and schedules. My days are also filled with hope.

In 2009, when my daughter, Sarah, was just over a year old, I heard the words that I could never have imagined: “She may never walk. She may never talk. She probably won’t live to be 2 years old.” These earth-shattering words have replayed in my head every day since then, driving my sense of urgency with every common childhood illness or delayed accomplishment of a developmental milestone. But in every situation, she has prevailed. She has defied expectations and she has overcome. And we’ve never lost hope.

Sarah has mitochondrial disease, which has threatened many times to take my daughter’s life. There is no cure, and there are currently no treatments that have proven to be effective. But our days aren’t filled with words like “terminal,” “fatal” or “tragic.” We focus on her strengths, which include her love of a strict routine and her blunt (and often funny) delivery of the truth as she sees it.

Sarah is a beautiful and happy 8-year-old who loves second grade and everyone she encounters there. Her favorite things are riding the school bus in her hot pink wheelchair, playing with her brother and sisters and eating Reese’s peanut butter cups. And although Sarah requires continuous oxygen and takes 19 medications a day just to maintain her baseline, she doesn’t ever complain. Never in eight years has she asked, “Why me?” or grumbled about the many blood draws, injections or surgeries she has endured. She just lives. She wakes up every morning as happy as can be, and she is always ready to meet every challenge head on. 

But the best part is that Sarah doesn’t see life as a challenge. She doesn’t see herself as disabled. She sees herself as the luckiest girl in the world, and she has said that many, many times. Over the years, she has stated, “I’m so lucky that I have my wheelchair — right, Mom?” or “I’m so lucky that I only had one seizure this time — right, Mom?” She even listened to our local radio station’s stories as they were raising money for St. Jude’s and said, “I’m so lucky that I don’t have cancer — right, Mom?” I didn’t have the heart to tell her that her disease is just as deadly. But honestly, I don’t think it would matter what battle she faces. Because Sarah is a fighter. She’s a warrior. And she is a winner.

She will continue to overcome her battle with mitochondrial disease, and she will continue to inspire those around her with her contagious joy and never-ending positivity. And one day, I pray that I can be as strong as my hero because she has shown me what strength and courage are all about: It’s about the journey. And Sarah’s journey is one of great magnitude. It’s a journey filled with hope.

We want to hear your story. Become a Mighty contributor here.

Lead photo source: Thinkstock Images

Find this story helpful? Share it with someone you care about.

Related to Mitochondrial Disease

Rear view of person in wheelchair in public place in blured motion

Why Being Disabled for 5 Years Changed How I View the World

Five years ago, I went down the disability rabbit hole. It wasn’t a sudden fall, but more of a slow slide down smooth walls. This formerly independent journalist was now at the mercies of a body in full revolt. Vision issues turned into not driving; hearing issues turned into iPod apps. Then there was the [...]
eukaryotic cell

Mitochondrial Disease Explained for Non-Scientists

September is Mitochondrial Disease Awareness Month, and knowledge is power. Our daughter has mitochondrial complex I deficiency caused by mutations in her NUBPL gene. There are dozens of types of mitochondrial complex I deficiencies, but her particular type is rare. Because there are so many types of mitochondrial complex I disorders and each is different, we [...]
Saira and Amaan

When Nothing Can Prepare You to Say Goodbye to Your Child

Saira and Amaan. Strength and perseverance come naturally when you are a special needs parent. You learn to overcome obstacles on a daily basis. You are taught the most beautiful lessons of love, patience, hope, courage and moving on by your child only. Friends and strangers view you as a very strong individual, and with every [...]

6 Ways to Become a Legislative Advocate for Your Child

In April 2016, Kentucky passed legislation that mandates private insurance “to pay for ‘therapeutic food, formulas and supplements’ for patients who are diagnosed with mitochondrial disease,” according to the Lexington Herald-Leader. Twice a day, our 5-year-old daughter takes a compounded mixture of vitamins and supplements known as a “Mito cocktail.” Prescribed by her neurologist, this [...]