It's Duchenne Awareness Day 2023 and I need to share our story again to bring awareness to our nightmare diagnosis. We live everyday hoping for a cure, hoping Wyatt is happy, and hoping that our love will get our family through the tough times. It is a long bumpy road and without our family and friends I don't know how we would do it. Everyday we wake up ready to conquer the day and bring awareness to Duchenne Muscular Dystrophy and live life to the fullest.
As I thought about what I wanted to share this year about our journey I felt my most recent heartaches would be best to help put our life into perspective. I wrote this while I was sitting on the dock at our camp in Manchac, it was raw and gut-wrenching in that moment.
My heart aches right now. We are finally back at the camp for labor day weekend. It has been years since we have been here. It used to be our weekend getaway but since Wyatt stopped walking this trip is no longer easy. We were all excited to be back together on the pass. Now it is all crashing down on us like an avalanche. As all the other kids are climbing pilings and jumping into the pass, Wyatt is sitting on the dock watching with the saddest most disappointed face. It's hard to get around the camp with all the tree roots, dirt, and bumps. He is trying his hardest to be part of the fun but I can tell it just isn't what he thought this weekend would to be.
While I sit here on the swing watching him get more and more discouraged my heart is aching. As he sits and wallows I can't do anything but sit by and hug him, hoping that my presence will help ease his pain. Patrick, on the other hand, is getting more and more frustrated with him. He told Wyatt to make a decision. We either stay here at the camp and make the best of it or pack up and head home. As Wyatt breaks down into tears my heart just can't take much more. It is shattering into a million pieces. He looks up at me with a tear-stained face and asks me, "how do you think it feels when you can't do anything you want to do?" My response is honest and heartfelt, "I really don't know what you feel like but I know what I feel like watching my baby be so sad."
He made the decision to stay. We ended up having a great weekend after this but living with DMD is so hard. Even the people who love and care for our family so much have a hard time understanding everyday life with DMD. It's hard to watch your child be on the sidelines when you know he wants to be in the game. It's heartbreaking to see him sit inside either cleaning tools or sharpening knives while everyone else is tubing or jumping off a roof of a dock. Being the mom to a child with special needs and a mom to one who does not have special needs is definitely not for the faint of heart. This diagnosis has stolen so much of the joy in our lives but it also reminds us to find joy in everyday moments: like having a captain's chair on a friend's party barge so he can turn all the way around to watch his friends and cousins tube from the back of the boat or being able to still lift an arm to throw darts.
We leave on Friday to go to our friends Kim and Duke's annual fundraiser. They bring boys with Duchenne like Wyatt and their late son Barrett on hunting trips. I can't wait to hug my friend. Being around someone who totally understands my struggle gives me a sense of calmness that I need to get through each day.
So I ask you today to share my post and bring awareness to #endduchenne. We are STRONGER THAN DUCHENNE!
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