Preparing Emotionally with a Child with Spinal Muscular Atrophy

It is 1974, and my wife was pregnant. We were not expecting twins However, we were blessed with twins. One of the twins, my daughter, Jessie was born with Spinal Muscular Atrophy [SMA]. Both of these situations were going to be a challenge for my wife and me.

I set out with the premise that I would mainstream my daughter in life. But I also knew that I had to get some help to emotionally deal with this new situation. I had to be ready to handle the trials and tribulations of having a child with SMA.

Feeling overwhelmed, sad, and petrified

I was clinically depressed and scared of the monumental tasks at hand. I felt sad, overwhelmed, and guilty about bringing into this world a beautiful daughter that had a serious life-altering terminal disease. The doctors at that time gave us a life expectancy for her to be able to live until her mid-teens. I became petrified of the thought of her dying so young.

This would leave a huge crater in my immediate family’s life that would be empty forever. I was sad and worried that I wouldn’t be able to go on without her.

We were there for her 24/7 365 days a year and that was the new normal way of life for my family. What would my family and I do without having Jessie in our life? How can I go on having this happen? I kept thinking that this was unfair, having a child predecease her parents. Being just 24 years old when she was born, I did not feel that I could handle that situation on my own. When Jessie became 17 years old, she was in her final days.

Getting professional help to cope

My mind was made up, that I needed immediate professional help to help me cope with going through anticipatory grief. My psychologist listened to me intently. Furthermore, I told her about how I was feeling and that I was at my lowest point in the depression: I had to be strong to deal with the slings of arrows that the archer, SMA, had launched toward my beautiful, intelligent daughter. I loved her immensely and did not want her to die. That was not how life was supposed to be. I always believed that parents died before their children.

Anticipatory grief

So, when Jessie was about 6 months of age, after getting that diagnosis, I began my journey with anticipatory grief. Every day for the rest of my life, waking up each morning I wondered if today was going to be the day that Jessie passed away.

This was taking a chunk out of my emotional life. Even though I immensely loved her, I felt that I had to keep a little part of that love for myself, so that I would be able to go on after her demise. I felt guilty for doing this, but I noticed that this was my way of surviving the tragic events that would happen in the future.

My psychologist said that I was too hard on myself and that I had a “God complex.” I was looking for a cure to her condition that evaded her doctors. She felt that I thought that I was mightier than God and that I could miraculously divinely heal my daughter.

Furthermore, my psychologist told me that I had to “get into the backseat of the car,” relinquish my grip on the steering wheel, and give the wheel to God to be in control of the situation. Who was I to think that God was not doing a good job? Who was I to think that I would come up with the magic cure and that God couldn’t do it?

But I was having daily discussions with the eternal powers that I kept asking why they are not interceding on Jessie’s behalf.

Talking to God about my daughter

In conclusion, the night before she died, I was sitting alone at my kitchen table. Thinking that I was crazy as this sounds, I heard my voice internally speaking to me. God was talking to me. He asked me if I was being fair to Jessie by trying to keep her alive just because I did not want to lose her.

The conversation further evolved. What kind of quality of life did she now have, being bedbound? Is this fair to her?

We went back and forth with the questions and answers. At one point, I agreed with Him and symbolically lifted Jessie to the Lord. I gave her to Him. I felt peace come over me.

The following day, she was rushed to the hospital and died. Anticipatory grief was gone. And my emotional healing was set in motion.

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