Caregiver

Everyone has a bucket list. A bucket list is something you want to do or experience before you die. In 1989, Jessie had a bucket list also. When she was...

Relationships are all about give and take.  We wear so many different relationship hats in our life. Child and parent, sibling, friend, mate and co-worker to name a few.  When...

I'll be honest here- I didn't grow up around anyone with a disability. Growing up, classrooms in my school were segregated. I didn't know anyone who was disabled personally until...

I’m sure we all can remember that Labor Day meant watching the Jerry Lewis’s Muscular Dystrophy Telethon.  It was always an emotional experience for me.  My senior year of high...

I realized that we, as parents of a child with spinal muscular atrophy (SMA), were trying to do everything possible to meet her needs. There were many choices in life...

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...

Advocacy is part of my daily life. I provide family support to newly diagnosed families, I share Emma’s story as a patient ambassador for the treatment she receives, I work...

I have talked about this a few times already. I have also read other parents' points of view on this site.  I can say with certainty that we all come...

We were going to have a baby! My wife Zelda, water had broken that night and off we went to the hospital as planned. So, my wife, my parents, and...

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...

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...

In March 2020 I became Mike’s full-time caregiver.  This was a big decision and one we discussed for a long time. It was the beginning of the pandemic and Mike’s...

Some mornings you wake up and you just know the day is going to be tough. You want to stay in bed, in the warm comfort of your home, and...

My daughter, who had spinal muscular atrophy, was mainstreamed in a regular classroom throughout her school years. We lived in a semi-affluent area. All her classmates were able-bodied. Her fellow...

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...

As a parent, we can remember that day when we heard the news, "Congratulations, you are going to have a baby." From that moment on, we immersed ourselves in planning...

Our son was diagnosed with a neuromuscular disease at the age of 5. At that time the name given for his condition wasn’t the same as his final diagnosis. We...

For our firstborn son, the first five years of his life were pretty much routine. We were oblivious to any health problems. The only noticeable activity was that he ran...

When we are given a health issue, we face a new journey. When it’s our own personal journey, we do our best to get the right answers and treatment. We...

Back in the 1970s, we found out that our daughter, Jessie, had spinal muscular atrophy [SMA]. A respected doctor told us that we should “put her away” because she was...