Duchenne can turn your mind into a web of chaos; thinking about everything you need to do to keep your son healthy and all the things he needs to have a great quality of life. It’s overwhelming how much this disease costs mentally and monetarily. Dallas and I stress wondering how to pay for the medical bills, the medicine, the wheelchair and the van that needs to be purchased. Another stressor has been our home. Westley has very little independence when inside our home but that is all about to change.
Thanks to my in laws (Papa and GrandMama Patty) we have broken ground on what we have dubbed “Westley’s Wing”! Dallas and I don’t have words to express how much their gift means to us. (I’m tearing up as I type.) To be able to give him a space where he is free is a gift beyond all gifts.
This new addition will allow Westley to enter the house on his own via his wheelchair (which we are working towards). His entrance will take him straight into his room where he can then access the remainder of the home. He will have his own handicap accessible bathroom to include a roll up sink and a zero entry shower. Right now Westley has to ask us to do almost everything for him. He can’t get up from the couch, needs help dressing and toileting along with the simple tasks like turning on the sink. Now when its time to wash his face and brush his teeth he will be able to do these things all on his own. It may seem simple to some but these are huge bits of freedom for him.
We have enjoyed watching every truck, tractor and worker man come and go over the last few weeks. There is so much more to do but its awesome to see freedom being erected before our eyes!
We have documented the fun step by step. I hope you’ll take a moment to check out the pictures.