The People We’ve Met Due to My Son’s Disability Are a Blessing

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by Prudence Jones |

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My 2-year-old son, Alfie, lives with LAMA2-related muscular dystrophy. Obviously, it is hard, stressful, and heartbreaking to raise a child with a disability. I wouldn’t wish this condition upon anyone. From his premature birth to his diagnosis, the experience has been a huge learning curve for us, to say the least.

But sometimes, we have moments when we can completely push aside the terrible parts of LAMA2. During these moments, we aren’t focused on contractures, therapies, or accessibility. We almost even feel “lucky” to have LAMA2 in our lives. (We always feel lucky to have Alfie in our lives!)

One of these moments happened this week, when my husband and I decided to take Alfie to a local wheelchair sports competition, where we were welcomed with big, open, and loving arms. At the competition were wheelchair users, allied health professionals, support workers, family members of people with disabilities, and others who were simply interested in the event.

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Everyone approached us to introduce themselves. They even let Alfie have a little go, although he’s too young for the competition. People asked if I needed help with anything, such as accessing equipment or joining an early intervention program. They cheered for my husband when he scored a goal, and they grabbed my phone to take photos when I tried out a wheelchair for the first time.

I’ll admit, I was ignorant before I had my son. If I am grateful for anything that has come from all of this, it’s that my eyes have been opened, and I’m now able to meet and be among these kind and wonderful people. I almost feel sorry for those who don’t get to experience the pure, raw joy that comes from these moments.

The people I have met because of my son’s disability are more than just a “silver lining.” Having certain people in my life, when our paths probably wouldn’t have crossed otherwise, is something I will always be grateful for.

I previously wouldn’t have said, “I want to be the parent of a child with a disability one day,” but I didn’t understand what that meant. It’s a job no one ever applies for. Nevertheless, at times, it feels like the best job in the world. And a big part of that are the wonderful people we get to meet along the way.

What are you grateful for? Please share in the comments below.


Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to muscular dystrophy.


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