5 giant people hold their hands out and hold a miniature family in their hands

Grandparents Help Child with SMA Live Life

Zelda's water had broken that night and off we went to the hospital, as planned. So, my wife, my parents, and her mother crammed into my car, and off we went to the hospital. It was February 14, 1974! The snow started to fall on my car.

At the emergency entrance of Brookdale Hospital, the doctors and nurses greeted us and ushered my wife into the labor wing. The rest of us went into the waiting room. Excitedly, we were awaiting the anticipated news.

A daughter's birth

After a couple of hours of labor, the nurse came out and told me that Zelda was going to have a Caesarian section because the baby was too large. About 2 hours later, the nurse came out to tell us everything was going well as planned and that we had a beautiful new daughter. We were overjoyed!

The nurse disappeared and about five minutes later, she came back to the family with a big smile on her face and announced that she had a surprise for us. She beamed that there was another baby inside, born two minutes apart, a crying baby boy!

Twins!

“Twins”, I yelled in disbelief. We had no clue that we were going to have twins!

The obstetrician had no idea because all he heard for nine months was one heartbeat. (The reason was that their hearts were beating simultaneously with each other in unison.)

We named our children, Jessie and Kane.

Our daughter wasn't meeting milestones

Several months later, we noticed that Jessie was not meeting the same motor development levels as Kane. We told the pediatrician about this, and he remarked that they were preemies, and we should give Jessie up to a year to catch up. We did.

A diagnosis of SMA

She was still developing slower than Kane. So, we were referred to a teaching hospital that treated Muscular Dystrophy children and was told that Jessie had spinal muscular atrophy.

Both Zelda and I were working full-time. Who was going to take care of the children when we went to work? We were lucky to have my parents nearby to be a great help to us in taking care of the twins.

Grandparents there to help

My parents watched Jessie in the mornings so that we could work modified schedules. My mom was able to give her breakfast and put her on the school bus and returned to our house to be there when the school bus returned. I started work from 6:30-2:30 pm. My wife worked from 7:30 am-3:30 pm.

My parents were dedicated to helping us take care of Jessie. They were with us when Jessie received physical and occupational therapy. My mother helped do activities of daily living with Jessie. They were a godsend with their endless love for Jessie which was mutual.They helped us through good and difficult times.

My daughter participated in all the family activities

Jessie was included in most family activities such as taking her bowling and letting her push the bowling ball down a specially designed ramp that was strategically placed for her to get strikes!

In the winter, we went as a family to the ice-skating rink, and we ice skated with Jessie. She was on the ice in her umbrella stroller guided around the rink being pushed by me.

It was important to all of us to have a happy family experience and make sure that Jessie got physical, emotional, and social support from her nuclear family.

Additionally, Jessie wanted to be as independent as possible. Jessie went to the movies and ceramic classes with her friends. We were with her in the movies, sitting several rows back, out of the way, just in case she needed us.

In conclusion, Jessie felt that she was like all her girlfriends and schoolmates, except that she was not able to walk. Jessie was thought of by all that she was an intelligent, fun-loving girl and was not defined by her spinal muscular atrophy.

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