Sometimes we have to do things we don’t want to do

I would like to preface this post that I am not telling this story for sympathy but to show how much a diagnosis like Duchenne has made Wyatt and Wynston mature.

On Friday May 14 my friend and fellow duchenne mom Trina’s son passed away. Austin had been on hospice for a few months but hearing news like this is never easy for anyone. Patrick and I were on the road when I read her message and instantly my heart broke for her and her family. Knowing how much sadness I was feeling I was so worried about telling Wyatt of his friend’s death. You see, Wyatt and Austin met at MDA camp 8 years ago. They were 3 years apart in age but shared the dmd diagnosis. When I told Wyatt months ago that Austin was sick and on hospice, Wyatt immediately wanted to go visit him in Lafayette but unfortunately we never made it up there. I just knew Wyatt was going to say something about it when I told him about him passing away and sure enough he did.

When we got home Patrick and I went to Wynston’s room first and he could tell immediately that something was wrong. I told him and the first thing he said was, “oh mom, Wyatt is going to be so sad. Did you tell him already? Is he ok?” I explained to my little guy that we had not and that we wanted him to come with us to tell Wyatt. He jumped up, hugged me, and held my hand as we walked to tell Wyatt. When we walked into the playroom, Wynston immediately ran to Wyatt and hugged him and of course Wyatt looked at him like he was crazy. I went on to tell Wyatt about Austin and he looked at me and said with tears in his eyes, “I thought he was getting better. Mom we never got to go see him.” Patrick and I each gave him a huge hug and that was all Wyatt said for a while about it. Wyatt has to process information for a while so I figured he would eventually start talking to me about his questions and emotions.

As the evening went on I could tell Wyatt was thinking about Austin. He asked Wynston to sleep right next to him because he needed someone close to him. As weird as it sounds, these 2 boys sleep together with Wrigley in the bed every night but usually Wyatt is at the head of the bed while Wynston is at the foot and big ole Wrigley just snuggles wherever he can find a place. Wynston looked at his brother as if wondering what was going on, I whispered that Wyatt just needs some extra hugs tonight after hearing about Austin and Wynston jumped into action. He was curled up next to him with his arm around Wyatt telling him how much he loves him.

Both of my boys matured that night. The next morning Wyatt woke up and was sitting in the living room when he heard me in the kitchen making coffee. He looked over at me and said, “Mom, do you know I love you so much?” I responded as I always do, “yes, and do you know that I love YOU so much?” (Grab your tissues). He then said, “Mom, come here. It’s so sad that his mom will never hear him say that again to her. I wish I could give his mom a hug.” In that instant I sat down with him and we talked. I gave him time to ask questions and talk about his feelings. He talked about never seeing a child in a coffin and I told him I had not been to a funeral for a child either. I told him I wasn’t sure when the funeral was planned and he quickly turned to me and said, “I want to go to the funeral. I mean I don’t want to go to a funeral but sometimes mom you have to do things you don’t want to do.” I wasn’t sure what to say to him at that moment. He then told me, “Mom, I have to be there and we have to bring Wrigley because dogs make people happy and they will be happy to see Wrigley.” He continued, “I will also let anyone pet him because Wrigley knows when people are sad and he will want to make them feel better.”

For the funeral on Monday, Wyatt dressed in pants...not jeans or shorts (though I would have let him) but dress pants. He said, “Mom, I can’t wear jeans or shorts to a funeral!” I just shook my head and thought to myself over the past few days my little boy showed me how mature he has become. I guess being with him all day everyday for the past year, I didn’t even realize it was happening. I can’t believe he will be 15 in August and starting High School. Time slow down, I’m not ready!

Please keep my friend and her family in your prayers and all the families with DMD. At the time Wyatt was diagnosed most boys with DMD lived till their late teens/early 20s...now with research and treatments some are living til their 30s even 40s. This brings more and more challenges for the one with DMD and more demands for families as the loss of muscle and dependence increases. We are so happy for this but there are still too many who succumb to DMD in their teens. We need a cure and we needed it yesterday! There is so much promising research out there but it is still not available. If only a small percentage of the money thrown at covid could be sent to find a cure for Duchenne that would be incredible. Anyways...we wait and pray for our tribe who lose their sons to soon and we pray for those who live long lives that their caregivers find the strength to be there for them so they can live a full life.