Parents Living With a Ticking Time Bomb

Living within the dash, 1974-1991. My wife and I lived 'within the dash,' holding a ticking time bomb. During this time my daughter lived her life battling spinal muscular atrophy (SMA). The ticking time bomb was spinal muscular atrophy during the 1974 era.

How long would she live?

Anxiously, we did not know how much longer she would survive this dreaded disease. We also did not know how our family will function after her imminent death in the future.

Life between the dash

I will focus on what my wife and I personally had to deal with during this time within the dash, trying to keep our anticipatory grief in check for those seventeen years. We were fighting for our emotional, mental, and physical health while trying to do the same for my child. In addition, we were trying to get the right treatment for my daughter to extend her overall functioning.

My child fought like a trooper! At the beginning of her story, our family’s story we were given a ticking time bomb by her pediatric neurologist, Dr. Silver (an alias), at a prestigious neurological hospital in New York City.

First, a misdiagnosis

Dr. Silver told my wife and me after a subjective evaluation that my child was severely mentally challenged. He hypothesized erroneously that she would have no intellectual functioning. He also ruled out spinal muscular atrophy and muscular dystrophy.

"We should ‘put her away" in HIS pediatric nursing facility and get on with our lives, Dr. Silver continued. Basically, all he did was drop a towel on her face and she did not try to remove it with her hand, as he expected. He checked her Babinski reflex. We felt like Dr. Silver dropped an unlit time bomb in our laps.

Getting a second opinion

After digesting the news over a few days, we decided that we would not follow his suggestion until we got a second opinion. "Putting her away" was not an option. So, for a few weeks, we tossed and turned, trying to chart which road we would proceed on, and to see if there was another doctor who does objective diagnostic evaluations. We were still carrying around this unset time bomb that was getting more difficult to handle.

Handling this time bomb

Finally, after going to a local hospital near our home, they tested her and referred us to go to another larger hospital in New York City which had a Jerry Lewis Neurological Disease Center. We made an appointment.

Finally a diagnosis

At this hospital, the pediatric neurologist did genetic and other formal testing. Then he told us that she had spinal muscular atrophy (SMA). This doctor told us the survival age in 1974 was around the mid-teens. Now, the time bomb was set!

The time bomb's timer brings questions

When is the time bomb going to go off? How much longer will she still be with us? What are we to do? How are we going to function dealing with a set time bomb? How will our family survive after her death? This in turn began my pre-grieving period. Are we going to develop post-traumatic stress symptoms?

Panicked, we ruminated that she could die any time now until her mid-teens. This caused us more anxiety, worry, and depression. Every day, 24/7, we were on a vigil, “Is this going to be the day?” We agonized.

How we lived within the dash

However, within the dash, we quickly began physical and occupational therapy two times a week and monitored her swallowing and breathing abilities as well as observing her skin for breakdowns. As she grew older, she was seen by a speech therapist for voice and swallowing therapy.

The time within the dash marched on to that dreaded day. We were totally immersed in caring for her physically, mentally, and emotionally as well as mainstreaming her educationally.

She had all the wishes and desires in life that any other girl her age had. On top of her bucket list, she wanted to graduate high school. We had the high school send teachers to the house. And she finally graduated.

Losing her

But unfortunately, she was never able to experience life like the other girls were able to achieve. Our hearts were breaking each and every day. Sadly, she passed away one week later after graduation.

Educationally and socially, we tried to make her life as normal as possible. The ‘dash’ of her life started to shrink at an alarming and frightening rate. But the ‘dash’ was closing in on her life and frantically breaking out heart, simultaneously.

The after effects

After she died, my wife and I felt the void in our lives. Sadness and depression and memories of the battle filled the void of losing our child. We had to regroup and rebuild our life functions without her.

Life without my child was very difficult for us. She is in our hearts. Not a day goes by that I don’t think about her and the valiant fight she fought over this insidious condition. But, with psychological, grief, and psychiatric counseling, we were able to regain a balance in our lives.

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