It’s Spina Bifida Awareness Month and we are honored to share this sweet story written by Erin T. about her son’s wish come true…
The Hot Air Balloon
Our twins are just over three and together have endured more than most adults in a lifetime. They were not supposed to survive pProm (preterm premature rupture of membranes in pregnancy), which occurred in the first trimester. They were born three months early as micro-preemies weighing a pound and a half each. Today they are thriving, but both have extensive ongoing health concerns that will continue to plague them in childhood and beyond. What is most rewarding to me as a caregiver is when their determination shines and they are able to overcome great obstacles.
Saturdays are usually pretty low key for us. They consist of pancakes or muffins, playtime, and letting my husband sleep in. On a few rare occasions we may leave the house, but definitely not before noon. It takes a lot to get going, and more planning and orchestrating than one could ever imagine unless they are in a caregiving role.
A few months ago we had been invited to a fall festival in town. It started early; 8:00 am to be exact, as there was a pancake breakfast, pumpkin patch, and tethered hot air balloon rides. After rising before dawn, we successfully loaded up the kids and the car and arrived at the venue just past 8:30 am. The whole event was packed with hundreds of people and we barely found a place to park. My son James, who has Spina Bifida, had his walking sticks. Along the way I realized we did not have the stroller, meaning everyone would have a lot more work that day.
Our agenda was to get a hot air balloon ride, as James loves hot air balloons more than anything. As we got to the registration table we were firmly told that they weren’t taking any more people as they were maxed out for the day. The organizers didn’t feel as though they would get through one hundred groups ahead of us and they had been turning people away for a while.
Disappointed, I mentioned in passing that James loved hot air balloons more than anything. We would have to come earlier next year they said, perhaps at 7:00 am, to get our name on the list and ensure we got a ride. We headed towards the pumpkin patch with James stopping every few feet, pointing his forearm crutches in the sky at the hot air balloons. He kept talking about the hot air balloons, as he is more persistent than any person I know; it has paid off for him on more than one occasion. He has perseverance and persuasion skills beyond the average 3 year old.
Our daughter Maisie went about picking a pumpkin while James was being a stickler for the hot air balloons. He told everyone around us about them, pointing in the sky. We attempted a few pictures in the pumpkin patch but it just wasn’t right; too many kids around and our kids not paying attention, etc.
Out of nowhere a man ran up to us, and said, “If you want to go in the balloon, we have to go NOW,” and so we grabbed our stuff and quickly followed after him. He took us to the very front of the line. “I want to make his dream come true,” the man said, before disappearing into the crowd. We were told the kids would be too small to go in the balloon, not safe with James’s mobility, and that we wouldn’t be able to go up together. A consult with the balloon pilot revealed all of these concerns to be false.
After a brief wait, we loaded our family into the hot air balloon and went on a tethered ride up at the park. It all went by so fast and before we knew it, we were on stable ground once more. The kids absolutely loved it and want to ride again. We are so grateful for the guy who gave us a chance to do something we’ve only dreamed of, and incredibly proud of James for never giving up on his dreams.
A few years ago, life found a way to slow me down. I was a different person then; ambitious and career-driven to a fault, and neglectful of my own health when other responsibilities seemed more important. I helped others and was extremely hospitable, but there is no mistaking the fact that I was living for myself.
Now, as a caregiver, it is my job to motivate and celebrate successes, align and coordinate care, and above all to ensure that my children have opportunities to succeed. We have strong partnerships in healthcare, our community, and family that work fluidly together, but it is not without great effort and attention to detail. I aim to never give up on my children’s dreams or ambitions, in spite of the diagnoses they have. They are strong, determined individuals; seeing them overcome barriers is the most rewarding part of my life.
“With love and patience nothing is impossible.” -Daisaku Ikeda
For more information about spina bifida, here are some helpful articles and resources: