Connections. Most of us need connections to survive. Meaningful connections, where we feel like the other person in the relationship truly hears and understands us. Someone who makes us laugh, even when we feel like crying. We can have lots of different kinds of connections in our lives, and draw from and learn from all of them.. As I have talked about before, as a child I always longed for a connection relating to my disability. I wanted to meet a friend who shared the same struggles, someone to who I could say .....this is how ______ feels, do you ever feel that in your legs, or does your weakness ever scare you? They would look at me with caring eyes and they would say "yes" I totally understand how that feels. They would be able to say this because they felt it too. Every human should be able to have that kind of connection. It's one that makes us feel truly heard and seen. I was 44 years old when I first felt that type of connection.
Since being diagnosed, I have made a lot of new connections with people who live all over the world, that share my same diagnosis. People of all ages who have walked the same steps in life that I have. It's mind blowing to get a message from Egypt, Scotland, Australia, or Canada just to name a few, saying that we have so many similarities. We bounce questions and different ideas regarding our disability off of one another, and how we navigate it. There is a lot of creative sharing of ideas, and trying different things that can help. It truly is life changing.
This week I Facetimed with a young woman who lives in Pennsylvania, that was also not diagnosed until later in life, despite living with her condition since a very young age. Just like me! She and I just lit up when we spoke to each other. It was a long awaited connection that brought much joy on both ends of the conversation. It was a connection made that we both hope will continue. I also spoke on the phone with a man who reached out to me that doesn't have my exact diagnosis, but a different form of Muscular Dystrophy. He and his wife could not have been kinder. We laughed, and we also talked about some hardships that his diagnosis, which did not come until later in life, has put in front of him. Both new connections said I was the first person they had connected with that they could talk things through. Through sharing my story, I helped someone feel less alone! I cannot tell you how happy that makes me. That is my goal, to connect others who can understand what living with Muscular Dystrophy is like. I have a few other special connections that I have made since being diagnosed. One beautiful lady, who has named us soul sisters, I would love to meet someday. Sometimes, you just know when a connection is a special one.
Recently, I wrote up a proposal for a mentorship program for the Muscular Dystrophy Association. I was hesitant to pitch my idea, even though I believe wholeheartedly in it, and I know it could change people's lives to have these connections. It's quite honestly a dream I have been working on for several years. I have a vision! I shared it with one of my new national connections at the MDA (who is a complete rockstar by the way!). She has helped me so much in the last few months to continue on my mission of helping others. She is truly in her job to help others, as are all the people I have worked with at the MDA. Today, I was connected with someone else at the MDA who further discussed my proposal with me. She said it was perfect timing! That's how you know something is meant to be. Just another reminder that if God places something on your heart over and over again, you should not ignore it, but do something about it!
Don't give up if the first several times you share an idea it doesn't come to fruition. I have pitched this idea many times over the last 5 years. It just wasn't the right time to the right people. I'm glad I didn't give up on it though. It's going to be a wonderful way to connect people living with Muscular Dystrophy, and their families. People who want to be able to make that special connection that is like a breath of fresh air. I am so overjoyed with the connections I made this week with others who are also walking humbly courageous right along with me.
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