Every year, at the end of October, I feel my emotions being all over the place. Some years I know exactly why and some years I don't realize it until a few days later. October 31, 2007 Wyatt was diagnosed with DMD by a neurologist with black skeleton stockings on.
This year though I could feel it in my bones. While Patrick and I were talking about it Halloween night I started to cry, saying I don't know why I'm just so mad this year. He said it's because "they lied, the first doctors were right."
At diagnosis, 16 years ago, we were given no real hope but as years passed we have held onto the possibility of a treatment. Unfortunately that has not happened and I guess Patrick is right, it feels like it was a big lie. With failed trials and the FDA being so slow it seems like this current trial is our last chance to make a difference.
In some ways this year was harder than last year. I can see the progression in his arms, which is what gives him his independence. My heart breaks when I see him struggling or unable to do things that he was able to do just a year ago. I can feel his frustration more and more and it comes out as anger and outbursts just like times before. Unfortunately, now he has a teenage mouth and wowsers that no filter DMD brain sure gets him in trouble. It's in times like those I question myself.
I know over the past 17 years we have taught both boys the value of love and respect. I have to remember that my boy can't see in front of his nose and when he is maxed out it all just comes out. I have to remember, I can't be with him all the time to remind him when he needs to roll away when he gets upset. He needs to self regulate but damn DMD makes that so challenging for him. It's hard for myself and the rest of his family. God bless Wyatt's SPED teacher, Liz Folse, who has realized these emotional issues and has been able to minimize them at school with different accommodations in order for him to be with his peers.
Though the treatments haven't met our expectations over the past years, we won't stop hoping for a new treatment and praying that the trial Wyatt is currently in will help. Because even if Wyatt and Wynston think deep in their hearts that DMD will steal him from us at 21, Patrick and I do not and we will continue to do everything in our power not to have that happen. We will continue to show our boys what commitment is. We are committed to hope, love, happiness and each other. So today we celebrate that for the past 19 years Patrick and I have been committed to loving each other through the good and bad times and we will continue to Laugh thru our tears the rest of our lives.
This is picture is from Rachel's beautiful wedding in Marathon on Duck Key.
10/14/2023
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