Honest Look at a Parent’s Heartbreak
Last updated: March 2023
The emotions that each parent truly lives with from that first day our child is given a diagnosis of a neuromuscular disease. In reality, each parent feels that same initial heartbreak when their child is diagnosed with any of the long list of possible diseases and disorders, including SMA.
Heartache continues on after diagnosis
Make no mistake each parent lives with that heartbreak even as the years move on. What we did learn is to stand firm with HOPE and be that support and love for our child. We also learn to be able to put ourselves into another parent’s worries and truly understand what they are dealing with.
Just what is each of us dealing with? On a daily basis we worry that our precious child will have to experience another medical procedure. In addition, if they will experience a painful social dilemma of being ridiculed or looked over by their peers.
Wanting to protect our child
As a parent, you want to be able to protect your child from as many hurtful experiences as possible. Unfortunately, the reality is we cannot be that complete buffer, but we can always be that supporter.
Challenges will change as SMA progresses
Over the years of your child’s development the challenges of their needs will constantly change with the progression of their abilities, or should I say their disabilities. Here is when, as a parent, you must find the strength to be the PARENT.
I can attest that meeting families who are dealing with the challenges of having a child with SMA or any multitude of medical issues is a feeling of kinship. We understand the depth of their fears and anguish of “Why my child?”
I wish that it was possible to accurately describe the anguish and sadness a parent deals with on a daily basis having their child deal with any health issue. But the truth is only another parent can feel that anxiety and sadness.
Holding the child's needs above the feelings of anguish
It’s not my intention to highlight only the tough emotional side of being a parent with a child living with any health issues. There certainly is another way to live with the positive attitude of a parent who gives their child all the love and support needed to hold on and live their best life.
As you can understand there is such a fine line between the emotions of sadness and the importance of being that parent who holds their child’s emotional health as a priority.
My thoughts are, as a parent we must try to always hold that thought. We can help our child handle their own emotions by our own example.
After all they are the person living with the challenges. Each child has their own feelings and fears to deal with on a daily basis. It’s of the utmost importance that we lead with confidence and only consider their needs for support. In other words, be the parent.
This life presents many challenges over the years. And as a parent we stand strong for our child. That is the reality of our love and responsibility for our child. It’s important that even though we live with the consequences of their challenges, we deal with our emotions ourselves and continue to give them the positivity of HOPE and watch them not just thrive, but grow into a happy positive person.
Have you shared your SMA diagnosis story with us yet?