In a row, two women and a man in a wheelchair are positioned with laptops in front of them; the man is looking over at the two women and smiling

A Family Affair

I have been writing about my spinal muscular atrophy journey for a few years now. I often wonder who out there is reading these articles. Obviously it can be intimidating talking about yourself. Especially when you are being vulnerable. About 5 years ago I was invited to be a part of a speaker series with other disabled people. I spent a few months working on my speech with the help of a speech writer. What I wasn’t prepared for was how my story would be impacting young people.

SMA impacts the whole family

This spinal muscular atrophy diagnosis affects the whole family. I would argue that from birth to maybe 6 or 7 it probably affected my parents more than me. The reason I came to this conclusion?  Reading my Mom’s articles.  When I first was asked to write for the site, they asked if I knew anyone who would be interested. They were looking for parents and caregivers too.

The viewpoints of my family members

I thought this over for a day or two before recommending my Mom and Suzanne, my partner and caregiver.

I’ve always been a very private person. For most of my life, I have not spoken about my disability or how it affects me. The older I get the less I worry about how others perceive me. I have been blessed with a strong supportive family, a wonderful partner and a great group of friends. These relationships have helped me become more secure with my circumstances.

I recommended both my Mom and Suzanne and they both have been sharing their experiences. I know from talking to my Mom that her experience of writing about me and spinal muscular atrophy has been therapeutic for her. Something I haven’t told her is that reading about her and my Dad’s experiences has also been therapeutic for me.

My parents made everything possible

When we are young we probably never think about how our parents are handling everything. I know that I never thought about how my parents made life happen for our family. The added stress of having a disabled child obviously was a heart wrenching experience. Especially when there were so many unknowns.

Over the years, I feel I have developed a pretty good sense of placing myself in other people’s shoes. Especially when it comes to how they interact with me. I am talking about my family and close friends. Even though I am the one who carries the physical and emotional burden of this disease I know they all do too.

Being able to relive my spinal muscular atrophy experience through my parent’s eyes has given me a newfound appreciation for what they went through. Even though I try to put myself in their shoes I still didn’t know all of the heartache that they went through.

If you have spinal muscular atrophy, start asking your parents about their experiences regarding your diagnosis when you were young.  I think it will give you a new appreciation for your parents. There is no owner’s manual to life. We all deal with situations in our own way. That being said, keeping a positive mindset has helped me stay mentally strong. It’s not always easy but if you focus and surround yourself with positive loving people it makes it easier.

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