by Albert Freedman
I remember the simple congratulatory message I received from a friend a few days after Jack’s birth. “You are now a family,” she wrote, quite matter-of-factly.
Yes, indeed we were a family, and I’ll always remember the hope baby Jack brought to our lives. I remember thinking about birthday parties, ballgames, bicycle rides, and perhaps a little brother or sister, or even two. For the first six months of Jack’s life, I pictured myself coaching his Little League team and taking him to Phillies games. I pictured myself watching Jack perform in his elementary school play and play in the school jazz band just like Dad.
Those early days of parenthood were full of possibilities.
And then one day, the possibilities began to fall away. First, our pediatrician told us Jack wasn’t developing normally. Then a pediatric neurologist expressed serious concern and told us to have further testing.
A few minutes after conducting an EMG test, the doctor told us Jack was likely affected by a neuromuscular disease called spinal muscular atrophy (SMA).
|The Freedman family|
The doctor told us there was no treatment or cure for SMA. Jack would be severely physically disabled, and then he would die of respiratory complications. Babies with his type of SMA were lucky to live to age 2, the doctor reported.
The doctor explained we would have an appointment with another specialist later in the day to hear more about SMA and how we would care for Jack for the next few months. He motioned to us to stay put with Jack in the examining room.
“Take all the time you need,” the doctor said. Then he walked out and closed the door, leaving us with each other, our baby and our thoughts. But the doctor didn’t leave us with any hope.
In a matter of minutes, Anne and I were thrust into a parenting world light-years from where we’d started.
Somehow many of us rediscover our sense of hope, a little at a time. And when we keep hope alive, we find ourselves feeling more positive and better prepared to care for our affected family members.
Today, I feel very fortunate to be Jack’s father, despite the challenges my son faces. Slowly, as these years have passed, hope somehow has returned to my vocabulary and to my heart.
The words of others helped us reclaim and build our sense of hope one piece at a time. Through organizations such as MDA, we contacted families with similar experiences who helped us feel we weren’t alone. Jack’s home care nurses, therapists and teachers all view him as a person worth getting to know, and they focus on what Jack can do.
Our MDA clinic became our primary resource for Jack’s medical care. Even in the middle of the night during the scariest of medical crises, the professionals at the hospital somehow remain steadfast in their hopeful approach to caring for children. We continue to be lucky to have so many caring people in Jack’s corner.
It’s easy to look at our son and see only his wheelchair. It’s easy to listen to Jack and hear only his broken speech patterns and the words that can’t be understood.
Entering Jack’s bedroom, it’s hard to miss the pulse oximeter, the feeding pump and the BiPAP breathing machine.
These are indeed things Jack needs, but these aren’t the things Jack is focused on. These aren’t the things Jack hopes for day-to-day.
Like any other 7-year-old, Jack hopes his friends will spend time with him. He hopes for birthday presents, family outings, holiday celebrations and success with his schoolwork. Jack hopes for new computer games. He hopes we’ll take him places with lots of space to zoom around in his power wheelchair. Jack hopes his little sister will be fair and take turns. He hopes to go swimming at the pool. And he hopes Dad will come home from work in time to give him a bath.
So it’s Jack himself who now shows us the way, with his own sense of hope as our inspiration. Despite the many challenges he faces every day, Jack is a happy, motivated little boy who hopes for many of the same things other kids hope for. And seven years following his diagnosis, we’re indeed grateful to have Jack sharing his hopes with us.
Albert Freedman, Ph.D., is a child and family psychologist in private practice in West Chester, Pa. Jack Freedman celebrated his 18th birthday in 2013.
Reprinted from Quest, February 2003, ©2003, Muscular Dystrophy Association