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My Reactions To Finding Out That My Daughter Had Spinal Muscular Atrophy

Last updated: September 2022

My experience with anticipatory grief (AG) began when Jessie was about 3 months old. She was not meeting her developmental goals compared to her twin brother. Our pediatrician advised us to wait a little longer and see if she catches up since they were born six weeks prematurely.

Misdiagnosed, at first

At six months, we took her to a pediatric neurologist at a prestigious New York Hospital. The doctor there did a subjective diagnosis and misdiagnosed her. My wife and I were told that Jessie would be ok motorically. However, she would be mentally handicapped, lacking speech, cognition, and intellect!

A second opinion

We took her to another local hospital for a second opinion. There she was given an objective medical examination. She was diagnosed with a form of muscular dystrophy. Jessie was referred to a Jerry Lewis MD Center of Excellence at another hospital. She was then diagnosed with SMA.

At this time, my wife and I endured anticipatory grief (AG). AG is defined as a normal mourning process that occurs when a loved one is still living. I was anticipating her death. As Jessie missed more developmental milestones, this anticipatory grief grew stronger. Other close relatives like her grandparents experienced it as well. We mourned that Jessie was not going to experience a normal life span. At that time, SMA children survived until about their mid-teenage years.

Mourning what Jessie missed

We valiantly tried to get Jessie the best medical care and physical therapy possible. It felt like a race against time. In addition, AG led my family and me to experience personal loss and grief.

As the AG consumed me, I started to dwell on the feeling of despair in this situation. I started to mourn Jessie's future life that she would not experience what other girls her age experience. She will never know about life such as going to college and having a career. Additionally, she would never go on a date. She would never marry or have children. Selfishly, we would never experience the joys of being grandparents to her kids. I felt sad, depressed afraid of her future demise.

I had self-directed anger. By both of us carrying carrying the SMA gene, Jessie was born with SMA.

My anticipatory grief affected my family

This AG, in addition to affecting myself, was also felt by my family. Anticipatory grief combined with SMA led my family and me to experience personal loss and grief.

As the AG consumed me, I started to dwell on feeling despair and helplessness. I start to mourn Jessie being cheated out of a future life. I started to feel my sense of hopelessness about the future loss of not having my child live a long life.

Bottling up my feelings

Never did I show anyone my true inner emotions. All feelings of being sad, afraid of the future, self-anger, anxious, or feeling guilty about genetically giving Jessie the genes that formed the SMA were kept inside of me.

In sum, I was consumed by depression, anxiety, and sadness. Consequently, I had to accept my lack of ability to help deal with the effect of SMA.

I had to concentrate on things that I could control instead. I had to wholeheartedly be positive and make each day a good experience for her.

However, the more I overthought Jessie's SMA, the more depressed I became. Consequently, I had to be thinking about what was happening now. I had to deal with the current presenting SMA issues. Anticipating what will be, may never happen.

Jessie succumbed to spinal muscular atrophy when she was 17 years old. The anticipatory grief was replaced by the normal grieving process. I miss her every day.

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