Recently I listened to a sibling view of life with the Duchenne diagnosis and wow it was eye opening. The four young adults that spoke were brutally honest and open with the audience. I am not going to lie, I had tears in my eyes through much of the session because all I could think about was Wynston. Before hearing these siblings talk, I had a very narrow view of what I "thought" Wynston was feeling. Listening to these young adults helped me to see that their feelings go a lot deeper than what they allow you to see and hear on the outside.
These siblings talked about feeling left out at times and theirs feelings of needing to be the one who helps their sibling and to make sure their sibling does not feel left out. They talked about the guilt that they have felt through the years, and not guilt that was put on them by their parents but internal guilt that they have put on themselves. I could feel my heart breaking as I listened to them because I know that my little guy has started to talk to me about these things in small doses and I have to be strong enough to listen to understand not listen to defend my actions with him.
As the hour continued, I smiled when one of the young men said that when he had to do a research paper he always chose to do it on Duchenne. The other 3 on the panelists shook their heads and said "same here." It brought back the memory of when Wynston did a report in 2nd grade and he chose to do it on Duchenne. I had no idea he was doing it until we were in the checkout line at Walmart and he looked at me and asked, "Mom did you know that Wyatt will die before he is 20 because he has duchenne?" I was totally shocked when he asked me this and quickly told him that we would talk about it after we left Walmart. I didn't realize, even at that young age, he wanted to learn about his brother and DMD. Unfortunately he found out information sooner than he really needed to and in actuality sooner than Wyatt did but it did start an open dialog with him and now he knows that I will tell him the truth when he asks the hard questions and that we can feel sadness and fear of the future together and that it isn't something he has to face alone.
Hearing the sibling stories and realizing all of them are so similar and have the so many of the same feelings helped me to realize the need to encourage Wynston to reach out and make the connections with other DMD siblings. Luckily PPMD and some "senior siblings" are starting a place for them to connect. I know from experience that being around others in the same situation makes you stronger, feel less alone and helps to feel like you are part of something bigger than yourself.
The love of a sibling is incomparable to any other relationship...there is love, some jealousy, some aggravation and frustration, and then comes the worry and helplessness when you see your sibling struggle and you can't do anything about. Hopefully with mine and Patrick's support Wynston and Wyatt will see that their brotherly bond is so strong and that a little sibling rivalry never hurt anyone.
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