It was almost a year to this day when we received Ned’s diagnosis. It was a heartbreaking, heart wrenching sucker punch that we could never have imagined. To say the least, there was a tectonic shift that day and my perspective has been indefinitely changed (but that is an entirely different blog post).
Since we received the news, I have remained steadfast that this diagnosis won’t define us as a family, Ned as a boy, or the life that we want to lead. Our fate isn’t what they say, and our path is different. Very simply, Ned is Ned and I will not let this infuriating diagnosis mess with my awesome little guy and the life of which he dreams. I recognize that this mindset is a healthy mix of stubbornness, denial, and optimism but it’s worked for me so I’m sticking to it.
We purchased our first home in 2017, two weeks before Ned was born. Maybe it was not our dream home but a lovely home with a show-stopping wrap around porch. Soon after Ned’s diagnosis, we realized our home would not accommodate a child with mobility limitations, let alone DMD. Too many stairs, narrow hallways, and tiny bathrooms.
Fortunately, we received an off the market offer (stars aligning), and without much of a plan, we signed on the dotted line.
We quickly started our search for an accessible house that we could grow into. We looked at dozens and dozens of homes – ranches, homes with elevators, in town homes, homes with acres of land. We measured doorways, we brought in an architect to price elevator installation, and I spoke to the handful of people I knew that shared a similar experience.
After months of looking and our closing quickly approaching, we were under contract for an accessible home. An elevator was “easy” to install and with a few ramps, down the road, this house would work well. Just as we were going to move to the final step, another house came on the market in a great location – so I thought I’d take a quick look.
As cliché as it sounds, within seconds of walking in, I knew this was our home. This house is more than its accessibility, it is a special place. It is calming, welcoming, and warm. It is surrounded by the most beautiful gardens, which are enjoyed in every part of the house. There is a brook running through the property that lulls anxiety away. This kitchen is made for family cooking. There are nooks and crannies inside and out that the kids can discover over and over. And yes, it has a 1st floor bedroom/bathroom with wide doorways and is a two-story house, but this home is also a sanctuary, where on some days, it feels like it is just our family in this world and nothing else matters…nothing else – including a rare disease.
As I reflect on our house hunt and the past year, I realize that settling into a perfectly accessible home would have been exactly the mentality I vowed to myself (and to Ned) that I would never take. Many of the houses that I saw that would “work” were then defined by the disease – a utilitarian solution to our reality. And for me, those houses would never be a happy home.
My guiding principle will always be that Ned is Ned; We are Us; and We are bigger than this diagnosis. We found the most perfect home for our family; one that does not remind me every day of what MIGHT come. This house is our dream house before, after, and during this journey and I am incredibly grateful that I can call it home.
