Being a Parent of a Child with SMA

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 into this role of becoming a parent with excitement and hopes for a beautiful future with our baby.

Your child's SMA diagnosis

After a diagnosis of SMA or any disease for your child, life also changes dramatically. What I discuss here is unique to my life experiences as a parent of a child diagnosed with a physical disease. Your story may be quite different, but each one of us understands the emotional toll that we live with.

Taking care of yourself

A point I hope to make is how important it is to take care of yourself. Just know that whatever it takes to give you the support you will need is appropriate.

I had never experienced knowing anyone with a disability before my son. It came with a host of emotions to deal with. The most prominent being fear. Fear of the unknown.

Understanding your child's needs

So, the first mission is to ask as many questions from the professionals as you need to understand what your child’s health needs will be. I will say that since we didn’t have a true sense of expectation, we were able to relay a positive view for his ability to live his life with optimism.

Those feelings of optimism were challenged over the years.  It has now been forty years since we were given the news that our first born will live a life with a physical disability. What we experienced was that our son showed us just how he lived a life without fear of the challenges he faced.

What do you wish others knew about SMA?

Your child will guide the way

Maybe that is some advice that I can pass on. As a parent of a child living with a disability you really need to find support for yourself to cope with any anxiety you may have. Don’t forget to realize your own child will show you how tough they are to handle their challenges.

My journey involved many changes of attitude over the years. At first we kept our many fears just between my husband and myself.  We cried together and prayed together, and shared our anxieties.

Loved ones too emotional to support us

There were many times when we talked with family and close friends we could see they felt uncomfortable with our sadness.  So for me I found comfort and support in talking with co-workers who didn’t have the emotional connection as our family did.

Tremendous support from co-workers and friends

I am thankful to all my co-workers over the years who listened to my anxiety and gave me a place to release the emotions that ruled my coping abilities.  The last twenty years of my career provided me with co-workers who went beyond just listening to my worries, they circled me and my family with just what we needed, love and understanding. But most of all they provided real help where needed. This was in the form of a fundraiser for my son to purchase a specialized van.

Let this be another bit of advice to pass onto a parent when dealing with the complex emotions of a diagnosis of SMA or any disease of your child.  Be willing to accept the support and love of all who are there for you.  

And God Bless.

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