What used to be a fun game played as a child is now my real life. This is actually how it has always been since diagnosis day. I can go days or months doing well climbing the ladders, but preparing myself for the chute all the way back to the bottom. Well on April 20, 2022 I felt the bottom of my stomach fall out while falling down the chute. Luckily as the days and weeks have gone by I can feel that I am starting to climb back up the ladders of the game of life.
We had a family meeting shortly after the big day and Wynston said his biggest worry is Wyatt being stuck inside and not able to be out and about with his friends and family. So Patrick; the best dad ever; is making that happen. He was immediately on the internet and phone working on getting Wyatt a way to get around outside with his brother and friends. I'll post pictures when it arrives...ladder (but with supply chain issues etc it won't be until about September...chute). When Patrick called about the new chair the representative told him he lives in Baton Rouge and has a son with DMD. I swear God puts people in your life right when you need them. He gave us his and his wife's personal contact information and a list of people to call for other equipment we will need, so we can get the ball moving on those things. Wow that was a nice big ladder.
As I said in my previous post, you don't know what you need until you actually need it. We all have our worries and my biggest worry is not being able to pick him up safely. Luckily he is small but a wet small person is easily dropped. Patrick knew this while talking to the wheelchair supplier and was able to get the information on a reputable ceiling track company. Patrick reached out to them the same day and just last week the representative was here giving us a quote for the track. Good grief having a disability is expensive but these things are needed to help make life easier AND SAFER for myself Patrick, and Wyatt so we will make it happen. As fate has it, after 13 years of being on the waiver list in Louisiana, Wyatt is finally on the top of the list...our newest ladder. So we are working with the state to help get some of these things funded...but we all know how the government works so we have no idea how long that will take (a small chute but one we can work around ). As I have said many times Patrick is not very patient and is ready to do everything NOW. So I will hope the state comes through quickly otherwise I have a feeling the track guy will be at the house next month putting it in place. It's just another day in the world of having a disability...a lot of waiting for things you need.
Anyways I just wanted all to know that it has been a rough few weeks but we are all working on finding our ladder that will help bring us back up. We appreciate all of your messages and calls to check in on us. We feel the love.
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