Photo Credit Nicole Young at Country Inn and Suites in Annapolis, Maryland
If you’ve ever been to Dr. Sprouse’s office for an evaluation or a conference, you may have stayed at the Country Inn and Suites in Annapolis, Maryland. It’s a quaint and unassuming hotel with a maritime theme that greets you at the front door, along with fresh baked cookies and a welcoming central staircase.
It is a homey and comforting place, by all accounts. But for me, it is also a strangely heavy place, imposing almost, because I never expected to need to be there. It is a hard, physical reminder of Wendell Berry’s words: “We live the given life, and not the planned.”
I never imagined when we were having our first baby that we would be making an annual pilgrimage to Annapolis for the entire span of his childhood and adolescence, both to navigate his growth and development and to participate in ongoing research on his rare genetic difference. But that is what we have done, nearly every year since our son was an infant.
There is another staircase behind the one in the lobby, around the corner and to the left. And that’s the one that really haunts me. It takes you down to the first floor basement, to a gathering area and conference room just large enough to host a small group of families like ours. I distinctly remember walking into the conference room for the first time, thinking, This is a club I didn’t ask to join.
Several years after our first visit, my husband and I met a mom at the beginning of another annual conference who told us her husband was there with her but just
couldn’t make the walk down the stairs to face the reality of their son’s diagnosis. I knew the feeling. I remembered how much it hurt to be there for the first time.
Many of you have walked down those same stairs into that same conference room. Or maybe your “staircase” is a different one, but we’ve all had this experience. A moment we can point to when we had to face, head on, the difficulties that come with accepting an XY chromosome diagnosis for our child. Difficulties we didn’t ask for, didn’t expect, and may still sometimes resent, if we’re honest.
Walking down that staircase may have been one of the most difficult things we ever did, but it also meant getting the help and direction we needed for our child. It was there, in that basement, that we first met Dr. Sprouse and her team in 2010, that we first introduced ourselves and then two-year-old Isaac to other parents and kids who were on the same uncharted path. And what we found there was more than just studies and statistics. It was a community, a place to find the guidance we needed for the months to follow and a recognition that we weren’t entirely alone. It was as much for us as it was for our child.
Beyond the medical, therapeutic, and academic guidance, there is community here for the taking. There are people in this group who understand parts of our life that some family members and even close friends never will. Remember the dad who couldn’t walk down the stairs? On the last day of the conference, he finally worked up the courage. And while I can’t say for sure, I suspect the tears in his eyes reflected at least some element of relief that he didn’t have to keep going it alone. Because we aren’t meant to walk this path by ourselves.
We can’t “New Year’s Resolution” away the challenges that come with this kind of parenting. But we can resolve to walk down that metaphorical staircase in each new season, to find the courage to get what we need for our kids and ourselves. And to embrace one of the most important things in this given life: community.
– Ann
Ann Bell Worley is an author, presenter, and mother of two children, one of whom has a rare XY chromosome difference as well as an elusive neuroimmune disorder. She is the author of two children’s storybooks based on Nurtured Heart Approach (NHA) and the creator of www.graycoloredglasses.blog, which focuses on the challenges of parenting a medically complex child.
