Most of friends and family know that Ella wants to be a scientist when she gets older. And the past few days I have been telling her about famous scientists that had disabilities like the ones she’ll have, but that they wanted to achieve their dreams so bad, they never let those struggles get the best of them.
I told her all about Stephen Hawking, when I got to the part about the wheel chair and the robot voice and the fact that he’d written so many books communicating like this, her eyes lit up and her mouth hung open. “You can do it to, Ella, anything you want, you can do” I told her, which made me feel slightly uncomfortable as I have always been honest with my daughter, even when the truth was hard to hear, and by telling her that she can do anything she wants, without knowing what it is she wants to do or what the severity of her disabilities will be, I’m not being completely honest.
Sometimes though, kids can get hung up on the wrong things, and right now I want her passionate and motivated, so she can go in physical therapy in a wheel chair and walk out of there two months later. So a little fantasy motivational speech doesn’t need to be put through Dad’s fact-checker program right now, and I clinch my tenth and smile and tell her yes, you can DO IT!
Am I wrong to do this? I’m changing my principles it seems like. Oh but wait, one of my favorite quotes just put my mind at ease.
“Intelligence is the ability to adapt to change”
Stephen Hawking.
ellaeinstien
I had the final stages of disease when I was about Ella’s age and was left in a coma as well (at least for a shorter period of time). The doctors told my parents that I would probably be profoundly disabled – both mentally and physically if I survived. Obvisouly, I did survive. More than that, I have thrived despite their prognosis. I am very happy that doctors don’t get the final say. You are right about the life in children. Ella’s spirit is very strong. Encourage her to keep working hard and to focus on the good in her life and the goals she wants to attain, I suspect that she will surprise even herself.
The other thing that I’ve learned, sometimes our limitations, when framed with the right perspective, serve to make us stronger, more creative, more sensitive – essentially better people. Ella isn’t a victim, she’s a survivor and with that attitude, she will go far in life, regardless of possible limitations. She will inspire others and bring hope to many. That is a true blessing in the midst of tragedy.
The other thi
Twenty four years ago, after my nephew was born with Spina Bifida, we’re all very amazed at the outcome, and the only reason why I’m just now sharing this with you, is not only is he doing exceptionally well, the thought of him with Spina Bifida has moved on.
Though he wasn’t given a very good prognosis at the time, he has since then, completed school with A’s and B’s, is holding down a full-time job, and is a professional drummer! He has a beautiful girlfriend, which we’ve just learned they are getting married next year. The wonderful life that he is able to lead has been endless, compared to the diagnose twenty four years ago. One just never knows, except we do know that our love and perseverance is what helped him become the person that he is today.
We all know from the stories you have shared, that Ella, too, is surrounded by the same amount of love and care, and by taking this new life of hers One Day At A Time, hope is what will pull her through.
Continued positive thoughts coming your way daily!
Dear Glen,
Although you want to rely on science, sometimes the human body surprises the scientists and doctors. Please allow your daughter to pursue the dreams, make her try things. Taking the challenge and learning the limitations is the only way limits should be learned. My husband was born with Spina Bifida in 1965. To this day he has a 5 inch purple raw looking scar where the opening was sealed the same day he was born. The doctors told his parents that he probably wouldn’t live very long, he wouldn’t walk, he couldn’t have children, he probably wouldn’t talk, he would not go to school. Basically an incredible litany of what normal activities that he would never accomplish. Although his parents didn’t push as hard as they possibly could have to make sure my husband did his best, my husband with the help of excellant doctors and physical therapists learned to walk by age 4 with the aid of braces. At age 45 he walks still. He not only made it through normal school life, he went to the traditional college prep and although he struggled, he graduated. He currently holds a master’s degree, holds a full time job, has two very normal children and goes deer and duck hunting with our son. Go For It! She will surprise you.
What kind of a scientist does she want to be?
there is something so beautiful about hope!! no one can decide ella’s own limitations
hugs to you, ella, deb, alicia, and mark!!
xx
r
I just saw this quote today for the first time. Ella and you (Glen, Deb, Alycia, Mark) came to my mind as perfect examples the deep love he was talking about:
Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.
Lao Tzu
Strength. Courage. Hope.
Alysson
Good morning Glen,
Thank you for sharing such wonderful information. With it, I did some research myself, and was delighted to find several other famous and non-famous survivors, and feel you’re doing the very best that a Dad can do; given her hope!
With your love and devotion for Ella, and the determination to help her through this, One Day At A Time, we can only hope for the best. This is why it’s called Hope4Ella!