The Decision to Change our Lifestyle for our Daughter
Jessie and her brother were born twins. It is important to realize that she was diagnosed with spinal muscular atrophy (SMA) at six months of age. My son did not have SMA.
Common illnesses could be fatal
We were living in Brooklyn, New York, at the time. The winters were getting colder. She was becoming more prone to getting respiratory issues and pneumonia. Her doctors warned us that catching pneumonia numerous times could be fatal for her.
Schools not equipped for handicapped children
The schools in New York were not mainstreamed at that time, and she would have been transferred by bus to a special school for "mentally" handicapped children. Jessie had a physical, not a mental disability. Unfortunately, she would have had to ride the bus for about seventy minutes each way. For these reasons, this school was unacceptable.
Needed to find a better place for Jessie
I decided with my wife what we needed to do next for Jessie. We instinctively knew that we had to find a warmer place to live with our daughter. My wife and I were dutiful in selecting a place that had good hospitals and medical centers.
In addition, we wanted to live nearby a specialized teaching hospital. We chose an area in South Florida that had an exceptional school system.
No turning back
We took a trip to Florida to buy a house with a contingency clause in order to sell our home first. Then, we sold our home and quit our jobs. Talking about financial insecurity!
It was very scary to give up our way of comfortably living and the security of having a job, family, friends, etc., and relocate to a new life to help Jessie survive, without the brutal New York winters.
Grandparents came along, too
My parents were very dedicated to my daughter and son. At the last minute, they decided that they would give up everything, family, friends, employment, etc., and move to Florida too. They wanted to be there for my children and give of themselves in any way that they could, to make life easier to take care of Jessie. Both of them are gone now, but I could have never repaid them for their love and dedication to my family.
Jessie loved my parents and trusted them wholeheartedly. Subsequently, they were integral in being involved in the medical care that Jessie needed, while my wife and I worked.
Making a life in Florida
My wife was employed in the outpatient surgery department of a local hospital. I found employment in management as Director of Speech Pathology for a national rehabilitation company. We bought a home in a nice community in South Florida. Jessie was mainstreamed in public school and had many friends in the community. Due to the warmer climate, her SMA symptoms and bouts with pneumonia were better.
Sadly, Jessie passed away after graduating from high school with honors. That was on her bucket list. She is sorely missed.
In conclusion, anyone can write and implement a plan to make selfless major decisions in life to benefit their SMA child. Taking the challenge was beneficial to my entire family.
Have you found something to help you mentally cope with SMA?