September is Muscular Dystrophy Awareness Month. In just 6 more days we will celebrate World Duchenne Awareness Day.
And so this month we ask that you remember us and other families like us as we soldier on in this journey. Many of the families we have met became blind sided with their diagnosis. We did too. I mean we hadn’t really even known anything about it besides maybe hearing the name in passing.
Yet we refocused and became experts in many different areas. This diagnosis encompasses so much more than just the medical which is daunting enough. But there is also the mental aspect of it. Our way of life was completely turned over as all of our ways had to be modified to accommodate extra time or equipment.
Yet we continued to march onward. I was going to say forward there but I’m not sure our journey always takes us forward. Sometimes I think we go sideways or backwards. I think that has led us to be able to face 2020 with the same determination we have used for the last 3 years. Sure nothing looks like the normal of January 1, 2020, but the one thing we have learned is there is a bigger picture of something far greater that we can not see. Our normal was forever changed on June 1, 2017 and we no longer put our foundation on what we or others think is normal.
And we are so fortunate to have friends that have come and embraced our journey with us. We have been blessed with many new friendships that would not have been possible without our diagnosis. And we have changed some of our friendships too. Some of our older friendships could no longer fit our life. But there have been so many that have stepped in and took that place to fill the void left there.
And so to kick off our month of celebration, we are honored to celebrate those that stand by us no matter what our needs and life looks like on any given day. We love you all and out of great fear of leaving someone out, I can not name you all! But know that we think of you often, pray for you, and feel blessed by our friendship, whether it be 2 weeks we have known you or 20 years!
So happy Muscular Dystrophy Awareness Month and stay tuned for more information because you never know what wild ideas I might come up with!!