Dear Rare Disease Family,
I finally built my dream home. Out the back window, deer graze as I sip my coffee. A visitor might describe it as quiet, but in reality, there’s a never ending chorus of crickets and birds. The sky fills with stars on a clear night.
I carefully chose the paint on every wall. “Black pepper” graces the walls of my office. Who would have guessed that black pepper is actually a deep and sultry shade of blue?
We were lucky to inherit some amazing neighbors when we moved in. People we wanted to live life with. A community.
Drive down the road a mile and you pull into my son’s elementary school. It’s filled with teachers, students, and parents who love our kids.
We chose this land. This house. This school. These people. This life.
I didn’t choose to join a rare disease neighborhood.
And I bet you didn’t either.
When our youngest son was diagnosed with Hunter Syndrome / MPS II in 2009, overnight, someone packed up all of my favorite things, taped the boxes shut, and moved me into a new house – a really crappy one. I woke up in a bed I didn’t know, under a roof that was caving in, and when I looked out my window, I saw tombstones instead of sidewalks and manicured lawns.
I woke up in a house I didn’t buy in a neighborhood I didn’t choose. And I couldn’t move away.
“How can I survive in this community?” I covered my head with a pillow and feigned sleep. Every day.
“I want to move. I want to move back to my old neighborhood of laughter and lightness, where moms worry about their kids making friends and sneaking out at night, not about their kids’ surgeries and surviving through the night.”
But one by one, you neighbors stopped by. You brought me cookies. You brought me supplies and helped me build something out of the dilapidated house I inherited.
And you taught me so much about rebuilding my house, that I started helping rebuild houses too. We worked side by side in our neighborhood of darkness and light.
Our children played among the tombstones.
We gathered our tears and watered the flowers with them. In the gathering, in the grieving with us as neighbors, we changed from residents, living in a neighborhood, to a rare disease family living in community.
And then we chose to become a rare disease family.
A neighborhood isn’t a group of houses just like a family isn’t a group of related people. It’s a feeling. It’s waving out the window as the neighbor jogs by on their daily run. It’s bringing cookies to the new family that is still surrounded by boxes.
It’s posting pictures of your neighbor’s lost cat or feeding lunch to a band of children when your house happens to be the play stop on a Saturday afternoon. It’s rustling up five strong men after work to build a ramp because you watched a new wheelchair being delivered the day before.
It’s remembering the sound of a child’s laughter after their voice is gone. It’s looking them in the eye and loving them until they are too. It’s walking two doors down after the funeral is long over, bringing a warm dinner, a soft shoulder, and a box of tissues.
I may live in a blue house and yours may be red. Yours may be bigger, mine may be falling apart. I might be an old guard and you’ve just moved in. But we’re family. And this is our home.
No, I didn’t choose to move to this rare disease neighborhood. And for a while, I wished I could live anywhere else. But now I’ve decorated my home. My kids enjoy the neighbors. You’ve taught me love and joy. And the sorrow that we feel when we stare out the window at the tombstones is shared among us, somehow making the burden lighter.
My dear family, thank you for welcoming us, for holding us, for sustaining us. Thank you for building a neighborhood, a family, that we can all be proud of. Thank you for taking the story of our neighborhood to the world.
Dare we say, “Happy World Rare Disease Day”?
Maybe not, when our world is filled with too much that is not happy.
But when days like this come along, we look at one another and say,
I am with you.
I am for you.
I’ll stand beside you.
On World Rare Disease Day and every day after,
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Last modified: December 31, 2017