Grieving the Challenges That Lie Ahead for My Son

Prudence Jones avatar

by Prudence Jones |

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Last week, I took my 2-year-old son, Alfie, for a walk-through at a local preschool. We are checking out all of the preschools in our area so we can find the best fit for Alfie when he turns 3 and is able to go. 

I was on the verge of tears throughout the walk-through and while chatting with the director, and when I’d loaded Alfie and his wheelchair into the car and pulled away from the curb, tears streamed down my face. 

At first, I wasn’t sure why I was crying. In an earlier column, I mentioned how in the early days after Alfie’s diagnosis of LAMA2-related muscular dystrophy, I left most of our appointments with specialists crying. This doesn’t usually happen anymore, and I thought perhaps I was just having an emotional day. 

But as my mind went over the day’s events again, I began to pinpoint some of the things I found upsetting. I realized all of the obstacles Alfie would face at preschool, all of the simple things that would be hard

Before Alfie could even enter the preschool, I had to move chairs so that I could push his chair inside. Children pointed when they saw his wheelchair before they saw his beautiful big smile. And the teacher asked, “Still?” when I explained that he is tube-fed. 

None of this was the fault of the teachers or other staff. The school is beautiful, and the children were painting, dancing, riding bikes, and climbing equipment. But I believe that these things are what broke my heart the most. I’ve become very good at focusing on and celebrating the things Alfie can do, and the visit felt like a slap in the face that emphasized all the things he can’t do. 

Lately, I’ve left appointments crying again. Initially, I blamed myself and thought I might be being a bit of a crybaby, but we have also been venturing outside our regular appointments, which has meant facing extra obstacles and even ignorance.

I don’t get upset that Alfie may never walk. I actually place no value on that. But I do get upset when it feels like the rest of the world values it, and when it feels as though the world refuses to cater to people who use wheelchairs.  

I get upset that we have to drive to another town just for Alfie to play on a swing. I get upset that we can’t buy tickets online for shows at the theater like everyone else. I get upset when people question why I use disabled parking spaces. 

All of this made me realize that Alfie will need to have a strength that most children don’t need, or at least not until they are much older. And I worry about failing to foster that strength in him. 

And that is what I wish for. I don’t sit around and wish that Alfie could walk. I wish that he didn’t have to be resilient just to participate in everyday life. 

I dream that he won’t be exhausted from having to be strong. I dream of support, softness, and ease. I want Alfie to be surrounded by those who truly see him and not his disability. 

So, perhaps it just wasn’t the preschool for us. And while for a moment, I wanted to crawl into a ball and hide, and refuse to leave the house ever again, I know that I will keep looking and won’t stop until I find the place that is perfect for Alfie.

One day, I will look back at this process like I have at all of the other things that once seemed too hard, and I will wonder what I was even worried about.

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Comments

Josiane L Farina avatar

Josiane L Farina

My grandson has DMD, it's hard to know what challengers he will face. My heart breaks everytime I see him, I pray that a cure would happen in his lifetime. Only time will tell. All we can do is support our loved ones and stay hopeful for a cure.

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