2020 is almost halfway over and what a year it has been so far. Changing jobs, starting a business, dealing with the Covid nightmare, Wishes for Drew becoming a 501(c)(3), and now selling our home! There are plenty of enjoyable things to do in life but selling a home I don’t find to be one. We have enjoyed our little townhouse for nearly 15 years. It was Vanessa’s and my first home which we planned on spending only three to five years at … you see how that turned out. We love our little home for so many reasons. We love its location on the very end of the last set of units in the entire community. We love the way it’s nestled right against the woods where we enjoy privacy except from the wildlife. We love the beds of plants surrounding our home which we have put many hours into and the little fire ring where we have sat, talked, and laughed so many times way into the night. We love the little creek meandering right out front where our children play and speaking of children…the fact that both of our beautiful children were born while we lived here and have grown up in this place makes it even more special to us.
While it will be tough to sell this home, we have many reasons for moving from this home. We want more space for future big plans of animals and gardening, space to hold events for Wishes for Drew, and most of all to get away from all those darn steps! Our home is three stories high which means a ton of steps. I hate the steps, Vanessa hates the steps (especially on laundry days), Brea probably doesn’t mind the steps, but Drew really hates the steps. Those steps make life very difficult for a child with Duchenne Muscular Dystrophy. All of these steps mean that Drew is limited in his ability to maneuver to different parts of the house. Drew is able to slowly climbs the steps whether through crawling or holding on to the railing and taking his time, but it’s not easy. Coming down the steps is a bit easier but not by much. Most days I simply carry him up or down depending on where he wants to be. Carrying nearly 70lbs of boy is much harder for Vanessa than it is for me so when I’m not home it can be rough. Drew knows I will carry him to the ends of the earth if need be, but I can see the satisfaction and simple happiness he experiences when we are places without steps.
A new home will mean a fresh start from Drew’s difficult diagnosis of DMD last year and a new beginning for the next phase of our little family’s life. A new home will mean new memories, new areas to explore, new rooms to make our own, and most importantly so much more freedom for Drew.
So far, 2020 has been a nonstop series of hurdles and obstacles, but just like Drew does in his daily life, we will find a way to adapt and overcome. With obstacles and challenges typically comes opportunity. One incredible opportunity for our family, is that we are so happy, honored, and proud to be one of Cure Rare Disease’s Founding Ambassadors. This means that Drew is on the same path as nine other amazing and brave individuals, to be treated with a customized therapeutic. The hope and excitement of selling this home and starting fresh in a new home has been vastly overshadowed by the complete joy we experienced when we found out Drew was now with Cure Rare Disease. We look forward to supporting Cure Rare Disease through Wishes for Drew in an effort to make positive changes in Drew’s life and the lives of many others living with a rare disease.