Christmas Eve I received a message from a young lady named Anna Mabel . She asked if I would be interested in writing and contributing pertinent articles to her web site called Walk N Rolling With Spina Bifida. They have over 11,000 members and are growing daily. It was begun by a young woman with Myelomeningocele Spina Bifida , who, at 32, has the drive, attitude and conviction that I see in my young 6 yr. old grandson.
When Breighton was born with SB, I began writing comments, finding love and support on a SB FB page. Later I was asked to be an admin, to help contribute links to articles on the web which I researched, looking for info helpful to making my grandson have all the latest medical advice available, just as my daughter and son in law , Kyle have been doing.
One day a reader commented basically that, who was I to make comments regarding SB, when I did not deal with the struggles myself personally? Unfortunately, I let that one comment make me feel that what I was posting was irrelevant. I believed what she said had merit and would never dream of overstepping my boundaries.
Although I had been with my grandson through most of his numerous therapies, doctor visits, surgeries, multiple castings, including body casts-I let one person's words dissuade me from contributing.
Breighton's parents have never allowed him to say, "I can't", until he tries. So inspiring to see them build a long rail of PVC pipes for him to take his first steps on. My Son In Law is an engineer who has built many apparatus to help strengthen his legs and help him enjoy things like going to the beach by building a chair with big wheels which worked perfectly to carry his son, daughter and an ice chest, complete with a beach umbrella.
At two, we asked the orthopedic doctor for arm crutches. I left that day with my daughter, determined to not let his words discourage us, "I don't suggest arm crutches until at least four years of age." This child's wonderful PT and OT listened to their hearts, and one very determined boy, always smiling through it all-by lending him a pair of hot pink arm crutches a little girl had outgrown. I remember with pride the day that we walked into that ortho's office, Breigh all smiles as he proudly took one careful step at a time.
The doctor was amazed and called every other Doctor in the clinic who all followed him as he walked down the hall. My daughter, SIL and Breighton showed them all that day to take each case individually, opening their eyes to possibilities-not limitations.
Back to the Christmas Eve message.....Anna Mabel Adams the young lady who wrote to me, asking would I be interested in contributing articles pertinent to the SB community? My question to her-why me? Her answer was so simple but probably one of the biggest compliments I've ever received. She said..."you have heart". I cried when I read her words.
My daughter, Brittnie Craft Hamel has been active as a Board member for SBGNO (Greater New Orleans) for several years. She and her husband do not listen to the limitations put on their child, but instead encourage him to be everything he can be. When they told us he may not walk when he was born, they started looking for cutting edge innovative therapies designed to strengthen his legs, including stander, rolling walkers, horse therapy and bungy cord therapy. He now goes to a gym, Spoga Fitness to work out and has the absolute best mentor-the gym's owner, who achieved the impossible after being born with his own physical limitations. He wears a prosthesis on one leg, but runs and does everything he can to give back to the community and inspire others.
His mentor, Jeff Day has shown Breigh that he has no limitations, he can do anything he puts his mind to-it may take him a little longer, or he has to do it in a non-traditional way but he does it all. Nothing stops this boy. As I write this, he is in a deer stand at the hunting camp with his Daddy, Uncle, cousin and grandfather.
I've had two back surgeries and had foot drop, wearing an AFO like Breigh for a year. We have matching scars on our backs from our surgeries. He is my little hero.
My grandson has even had a small speaking role on NCIS-New Orleans. He's gone to a local high school with his mentor, Mr. Jeff to encourage others to find patience, tolerance and love for those of us who are born with differing abilities.
The best part of this whole story is that I suggested that Breigh and I co-write contributions to the web site and it apparently was thought of as a great idea. Now I have two things I adore facing me, time with Breighton Hamel to write from a child's perspective, what it means to live with SB and the other is doing what I love, writing.