How My Daughter’s Diagnosis and Care Affect Her Siblings
August 2017 was a busy and exciting time for our family. My youngest daughter, Bella, and I had just spent the weekend helping my oldest daughter move into her dorm room and begin her freshman year of college; my son had just begun his freshman year of high school; Bella had begun the fourth grade at a new school; and I’d just started a new job working at Bella’s school.
There was so much to be excited about. My biggest challenge during this time was getting my kids to get along. Little did we know that neuromyelitis optica (NMO) was about to come and change our lives forever.
Being diagnosed with a rare disease is a life-changing event, not only for the patient, but also for the family. Bella received her diagnosis in September 2017 when she was just 9 years old. While the journey to Bella’s diagnosis was stressful, scary, and traumatizing, I’m grateful that she had her siblings right there with her.
During the initial days of Bella’s NMO attack, I decided not to tell my oldest kids just how sick she was. I didn’t want them to worry, and I definitely didn’t want to add to their already high stress. What I didn’t realize was that my stress is my kids’ stress, and they would do anything for one another.
When I learned that Bella had NMO, I was unsure of what life would look like for her and her siblings. Bella’s doctors told me that I might have to provide 24-hour care for her and teach her how to walk, talk, and eat. I didn’t know how things were going to work, but I knew that as a family we would figure things out together. Bella’s siblings also promised to do all they could to help care for Bella and keep her safe.
I will never forget the look on my other kids’ faces when they first visited Bella in the hospital. She was in the intensive care unit in a medically induced coma and had tubes and machines all around her.
My son walked in the room and immediately became emotional at the sight of his sister. My oldest daughter was also overcome with emotion, but both of my kids knew they had to be strong for their sister. In fact, my oldest daughter was not too happy that the room was so quiet. She told me that Bella probably didn’t want to hear us crying, but she would love to hear music.
At that point, my daughter decided to put on Bella’s favorite song, “Uptown Funk” by Mark Ronson and Bruno Mars. We immediately noticed that Bella began moving to the beat. A few minutes later, we were all completely amazed that even in a coma, Bella was dancing. We all shared a laugh of relief, and in that moment, I knew everything would be OK.
In the years since Bella was diagnosed with NMO, we have learned so much as a family. My oldest daughter graduated college in the summer of 2021 and is now working at a library and advocating for underserved members of the community; my son has graduated from high school and just completed his freshman year of college; and Bella is headed to high school with lots of confidence, sibling love, and tips for four successful high school years (Mom-approved or not).
The lessons I have learned in this journey are many. The bond between siblings is unbreakable and undeniable. When one family member is diagnosed with a rare disease, it affects the entire family. Take time to stop and enjoy the music, even in the most difficult of times. I’m so proud of the strength, courage, bravery, positivity, and optimism my kids show the world and each other every day.
My hope is that they’ll continue to be there for each other and grow their sibling bond in the years to come.
Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder (NMOSD).