It gives us a chance to leave our small, one-room torture chamber where our child lies ill, injured, needy, and collect ourselves. It gives nourishment and strength as we return to bedsides. It lets friends gather.
Last night at dinner I sat with three other friends, and I'm so glad to call them my friends. We commiserated, we hurt for each other. Every one of the four of us are also part of the hospital's Rainbow Kids team, the palliative care team. Each of us has had "the talk" several times with the doctors. You know what I'm talking about: the "we've done everything there is to do, here's the reality of what's coming." It hurts, plain and simple, deep down in the soul.
BUT, we also laughed, teased, exchanged ideas, shared tips. Joked about how if you got to ride in a helicopter to the hospital, you should get to ride in one back home, too. Compared nurses, we've all had most of the same ones. We got pretty loud. We ate toooo much (or at least I did). Finally we decided that we probably ought to get back to our rooms. One mama peeled off to head down the stairs to the PICU and the rest of us continued to our unit. Except we're all on the same unit. We were laughing as we came around the corner, the three of us together, and right at shift change, and kinda startled the nurses.
"Wait, you three all know each other?" Oh, yeah, and we go way back. Back to long nights, scary procedures, rough days. They said we looked like a posse coming around the corner. And maybe we kinda are. We search out the best ways to protect our kiddos, we stand shoulder to shoulder. And we support each other.
See, while those who work here know the hospital from a professional standpoint, we know it differently. They go home at the end of a shift, and work a few shifts a week. We move in here, stay here, day in and day out with our child. They went to medical school, we go through the refining fire of parenting a medically fragile child, a child for whom we are their only voice. Those things bond you. Are we all the same? Not a chance! But we are definitely connected.
On the Aaron front, we get to go home today! YEA!! And his birthday is just around the corner on Monday. Because of this recent "vacation" it's going to be very casual. But we'd love to have friends stop by for some cake and to wish him happy birthday sometime between 7-8:30 on the 13th. We are so, so grateful to still have our little bug with us after six years.