Patrick and I grew up in the same community and had many of the same friends through grammar school and high school. When we started dating I was a senior in high school and he was a freshman in college. We continued to have many of the same friends that we had through our teenage years and made others as most do in college. As all of us started our adult lives we were in each other's weddings, godparents to each other’s children, and had big plans of what our futures would look like as our kids grew up together. And then the big Diagnosis day happened for us, October 31, 2007.
Our then 13 month old got diagnosed with DMD, an incurable terminal genetic disorder. What one would think is something that would bring your closest friends even closer actually turned out to be the complete opposite for us. Patrick and I were lost. I don’t want it to seem that it was an immediate loss but a gradual loss of inclusion which seems to hurt more because there isn’t one thing that I can put my finger on as to why it happened. I talk openly and freely with other duchenne parents and those who receive a tragic diagnosis and they have the same experience.To say we were lonely and surprised by the way these relationships deteriorated would be putting it nicely. So many days and nights I would cry trying to figure out what was happening. Why would friends with the same age children just stop calling or inviting us to events. We were already at a loss and heartbroken knowing the inevitable timeline of duchenne and now at a loss of losing friends. We know being around someone who is grieving is hard, being around a child who can’t keep up like others is hard to watch and dealing with a child who has behavior outbursts is uncomfortable but being alone to figure it out was a hard pill to swallow for me. Those are just a few examples of what makes “normal hanging out life” extremely different for us, still to this day.
Sometimes who you started out as is no longer the person you are after a diagnosis like Duchenne, and you know what that is ok but realize the new you may not be who others expect or need you to be. Unfortunately instead of finding comfort in the arms and hearts of old friends we found it in new people who wanted to join us on our difficult journey.. Now don’t take this wrong those old friends would still be there if we needed them but sometimes that is just not enough to sustain a true meaningful friendship.
So along this journey we have continued to find people in the Duchenne community and local people who show up on our path and never leave. These are the friends who then become family, the people who we have fun with, protect us when they see we are falling apart and take a true interest in our life. They love our children unconditionally.
Let me explain, the Duchenne diagnosis sometimes comes with behavior issues, struggles that put the physical parts of DMD to the backburner. I will go into the behavior topic another time but I bring it up because these new friends and slowly but surely our family have tried to understand these issues and support us in every way possible. They do not judge Wyatt or Patrick and I as parents. They don’t tell us how we should parent our child or shame Watt for behaviors that he cannot control. They just love us, unconditionally. We are so blessed to have many of these family members live in the same neighborhood as we do and they have watched our family continue to grow in love and understanding of living with DMD.
As Wyatt’s physical condition progresses we continue to see these families step up. They are ready to jump into action and make Wyatt and Wynston feel just as much part of their family as possible. For example, this hunting season, one friend-family member took Wynston on a hunting trip to give him some special time doing something without his big brother. Another friend-family member, my dad and my uncle all bought hunting stands so Wyatt could participate in hunting season just like everyone else. It’s the little things that show Patrick and I that we are not alone in this journey and that we always have our family to lean on. So if you are reading this and you haven’t checked on a friend in a while...send a text, make that call, your friend would love to hear from you, I PROMISE!
Hugs. We love you guys.