I recently went to a baby shower and my aunt asked me, “So how's it going?” and I responded as I normally do, “Living the Dream”. We both smiled and laughed knowing that what my family is living is not a dream anyone wants to have. I told her “maybe my next post should be titled Living the Dream.” So Aunt Kay...here it goes.
Living the Dream comes out of my mouth so quickly and effortlessly but many think it is more of a nightmare than a dream. The truth is most days I would consider it a dream instead of a nightmare. Fortunately the progress of Wyatt’s disease has been slow so we have been able to take advantage of that and make life fun, and not focus too much on the future. We have taken the time to prepare as much as we can for what the future holds even though it is not easy for any of us but we try not to dwell on it. We try to take each day as it comes and find the sun behind the clouds which is not always easy...for example Our sun: Wyatt can still get in and out of his chair. The clouds: Wyatt has been in his chair more and more each day which is now part of our new reality. Though the wheelchair has always been the thing I have had nightmares about, I realize how much freedom it gives Wyatt and how much his anxiety has decreased since he uses it more. The wheelchair removes his fear of falling, causing a fracture that causes him never to walk on his own again. Yesterday the new electric chair arrived and today the battery will be here. My heart was ready to burst when I looked at Wyatt's smile and joy to see his new wheels.
Though we have been able to enjoy the dream, recently a few of our DMD friends have been living the nightmare part of DMD. I feel like this is important for everyone to know that our current story is not the norm for many DMD families. I have friends whose sons are struggling with the disease right now and it is heartbreaking.
A boy that Wyatt has gone to MDA camp is in hospice. I read my friend’s story and right now they are going through the nightmare we first heard about at diagnosis. He is only 16 years old! It’s so hard to hear their story but we know that it is a reality and one that we prepare for but pray that we do not have to live for a long time. I ask God to help this family daily and I ask you to say a prayer for them in this time of need.
2 other DMD families are struggling with not only Duchenne but with other medical conditions along with it. Both boys been in a lot of pain and their parents are tired from lack of sleep and struggling because it has been such a hard road on their Duchenne journey. They is such a bright light and their faith in God is unshakable. I think about them often. One mom always ends her posts always end with BLESSED! LIVE ON PURPOSE! I just love it and I try to live on purpose daily!
And one of our newest friend’s son was just hospitalized because he had an infection in his port. The port was placed so he could get the medication that can help slow the disease's progress. So something that should have been making their life easier ended up causing him to get sick. Luckily little Brody is out of the hospital and doing well but is now struggling with the side effects of steroids we know all too well. It is so early in their journey that I hope they know we are there for them along the way.
I tell you these stories because it is the reality of Duchenne. We have been blessed to have Wyatt do so well for the past 14 years, so in actuality I guess we have been living the dream but with each and every day I see this disease rob my little boy’s body of the abilities he had just a few months ago. So today I choose to see the sun behind the clouds and be thankful that I have been able to live the dream and I hope that we are not faced with the nightmare anytime soon and I highly recommend to you to make time each day to find the sun behind the clouds even if just for a second.
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