Meet Brendan, parent, husband, and an adult with Spina Bifida. Brendan has the unique privilege of working for 180 Medical. Drawing on his firsthand experience of growing up with Spina Bifida, he wants to share what his life has been like so others can better understand that experience.
Childhood with Spina Bifida
Brendan is the oldest of three children. His parents made it clear they would never bubblewrap him or his siblings. While they cared deeply for their children and kept a close eye on them, they also made sure Brendan could experience the same things of other children his age, even though he was born with Spina Bifida.
He remembers his mom often saying, “One day, we won’t be around to do this for you. That’s why you must learn how to do this yourself.” This usually referred to daily chores, such as doing the dishes, weekly laundry, and cleaning bedrooms. While some of those tasks took longer him than his siblings, it was an incredibly valuable lesson in independence.
Everyone lives with their own set of circumstances. However, when Brendan looks back, he deeply appreciate that his parents did their best to let him be a kid — not just a kid with a disability.
What Is Growing Up with Spina Bifida Like?
People often ask Brendan what it is like to grow up with a disability. Two words he feels describe it best are unique and challenging.
Every person’s experience of living with Spina Bifida is unique to them, just as every case of Spina Bifida is different. In Brendan’s case, he did not need a shunt at birth, while many children born with Spina Bifida rely on.
Some of Brendan’s friends with Spina Bifida walk independently or use crutches, while he primarily uses a wheelchair. That did not stop him from leading a very active life, including sports, scuba diving, and more.
For Brendan, living with a disability often means facing more challenges than many of the people around him. From frequent doctor visits and occasional surgeries to ongoing mobility issues, each day presents a new opportunity to learn how to navigate the world, usually by finding creative solutions. His path has not always been straightforward, but he believes that taking a “detour” does not mean he cannot still reach his goals.
Getting Proactive and Creative
Individuals impacted by Spina Bifida face a wide variety of new experiences and challenges. As children with Spina Bifida, many long for the feeling of “being normal”. Over time, however, they may come to see that their particular circumstances have played a powerful role in shaping who they are today.
Living with Spina Bifida has motivated Brendan to become more proactive. He has worked to support the Spina Bifida community and build connections with others. Brendan has collaborated with young athletes living with Spina Bifida, spoken to various groups, and stayed actively involved with his local chapter of the Spina Bifida Association.
Additionally, the level of creativity regarding the issues faced daily can directly impact levels of independence. One aspect of this involves personal care.
As a person with a disability, he manages many additional tasks regularly, such as self-catheterization, following a bowel program, and performing frequent skin checks to prevent breakdown. These are tasks that individuals without Spina Bifida typically do not need to consider, but for someone living with Spina Bifida, managing them is essential to maintaining a high quality of life.
“Being persistent in our day-to-day routine is paramount. Ultimately, the only person who knows if we’re being accountable is ourselves. We always answer to the person looking back at us in the mirror. And the only way to do that positively is to be persistent.”, said Brendan.
Facing Challenges Head-On with Spina Bifida
Being persistent can require significant energy, and some days may prove more difficult than others. However, Brendan believes there is always an opportunity to find creative solutions, and each new day brings a fresh start.
Growing up with Spina Bifida taught him the importance of making each day count learn to make each day count. He emphasizes that there are always new approaches to overcoming the daily challenges faced by those with Spina Bifida, and by doing this work on oneself, it can help pave an easier path for others who follow.
Growing up with Spina Bifida shouldn’t mean losing care.
On this Giving Tuesday, your gift ensures that children with Spina Bifida don’t just grow up — they grow into independent adults, by connecting those with Spina Bifida to the resources and specialists they need to stay healthy.
TODAY only, your gift will be MATCHED up to $5,000 generously sponsored by our friends at 180 Medical.
