We went on Trey’s Make-a-Wish trip to Disney World and stayed at Give Kids the World in Florida this past week. I found out a few days before we left that a fellow MPS II family we “know” (the mom and I have talked by phone, but never met) would be overlapping our trip with us.
After meeting them for the first time and reflecting on that meeting, it dawned on me what is so different about my friendships with MPS II parents and my other friends.
With every other friend in my life, we meet, and the relationship grows from there. A given with all of these friends is that personal information always comes after pleasantries. We also always meet before becoming friends and it is through spending time together that the friendship grows.
With my MPS II friends, the relationship works in a completely different way. We’ve never met beforehand, and the first time we speak, there are only rarely attempted pleasantries before diving into heartbreaking tears and sharing the deepest fear every parent has- the death of our child(ren). Without meeting this person, we immediately know and feel the depths of each other’s sorrow and fear because we have experienced it for ourselves. There is no time required to build a relationship. It exists the moment you speak.
So when we met Anne and Jeff Deneen and their three kids (their son Liam lives with MPS II) at Give Kids the World, and Anne talked about her pre-kids days of being an Atlanta Braves fan, it was after reading about what it was like for her to watch The World Series from an isolated and temporary apartment with Liam post-transplant, miles away from her two daughters at home, and from A New Perspective.
When she told me briefly about Liam’s bone marrow transplant, I listened, having spoken with her right after diagnosis, having followed her stages of grief on her blog, and having talked with her on the phone while she vacillated between deciding to transplant or choose enzyme replacement therapy.
When we talked superficially about MPS II, I knew that beyond the ease of her words and mine, were fear and worry that had brought us to our knees.
It is so strange and so wonderful to watch someone talk about MPS and our life like they talk about the weather (just like I do…. because we do it with the public and with our family and our friends all the time, and at some point we’ve gotta stop crying) and know just exactly how much is beyond that simple dialogue.
Anne and Jeff, meeting you was soul food. Thanks.
Love Deb
PS. Give Kids the World (where Make-a-Wish families going to Disney World stay) is AMAZING and sobering- a whole village full of families facing the mortalities of their children, some of who will not make it. I sat in meditation daily, breathing in the suffering of myself, my family and this village, sending us all healing with each exhale. What a powerful trip.
Even the smiles. There is SO much behind them. Behind everyone’s…
