the girl with the strange eyes

I've been meaning to update the blog all week; you'd think that with school vacation week, I would have had more time for writing. I guess I did, but I used it to try to meet two looming professional writing deadlines, an article and a syllabus both due by the end of this week.

We did enjoy a good vacation week. I felt, for once, that it was a good mix of getting "things" done and being together as a family. We had nowhere to go, no promises of visits to fulfill, and I was grateful for that. Grateful just to stay at home in West Bridgewater, to have time to work on house projects (our basement refinishing project is still ongoing), to take walks through our neighborhood, to welcome Jackson's baseball season (a town parade and opening ceremony!), to write, to help the boys to get together for youth group (Orilus) and a new friend (Jackson), to do a day-long appointment at the Down syndrome clinic in Boston (together--so wonderful to have Jason with me on such long days at the hospital!). I worked two mornings, too, and so the week passed with beautiful weather, a lot of driveway basketball, and family YMCA workouts.

Moriah, it turns out, came down with a virus on Thursday. She's been fighting diarrhea since, and last night, ended up in two ERs--one at South Shore, and then here at Children's, where we were admitted last night. But now that the diagnosis is certainly viral, they're most likely sending us home this afternoon, on Pedialite and with a new diaper protocol for her terrible red bum. Poor little girl. She's had such interrupted sleep since our ER adventures began yesterday evening, and now, finally, is taking a deep nap while I try to keep the nurses at bay. And have a few moments to read, and to write.

What I should be doing is working on an article I'm writing for publication; what I've been doing instead is starting Henri Nouwen's The Road to Daybreak (thanks for the loan, Val!). Many of you know Nouwen as the Yale and Harvard prof who left his life of academia to live among a community of adults with special needs. He writes there of the two worlds--the academic, and the special needs--and I am resonating with this entirely. Wednesday I sat in the UMass library for six hours, writing and writing and loving every minute of it. Thursday I sat in appointment after apponitment at the Down syndrome clinic, explaining again that no, I don't have any mental handicaps, and yes, I have graduated high school. And the two worlds are so contrasted. In one, I'm revered for my writing and my critical mind; in the other, my ability to help Moriah learn to sit and teaching her to eat so well.

Yesterday as we were checking into the ER at South Shore Hospital, Moriah had a big mess (surprise, surprise). I brought her to the ladies' room to change her. As I was settling her back into her stroller there, a woman about my age came in with a tow-headed little boy of about 3 years old. He walked right up to Moriah. "Do you see the baby?" I asked him. "Yes," he said solemnly. "Isn't she cute?" I asked him. "Her face is strange," he responded. I wanted to laugh--his sincerity and honesty so charming, even as I was processing how even such a little guy can see Moriah's diagnosis. "What do you mean?" I asked him. "Her eyes are strange," he said. "They're shaped funny." At this point, of course, his mother is hushing him, looking at me uber-apologetically and pleading, "I'm so, so sorry." I smiled warmly at her, assured her it was fine, and said to her son, "I'm so glad you noticed my baby. She can see you, too, and I think she's happy you looked at her."

The mother apologized a million more times, and as I left the bathroom and the two headed into a stall, I heard her say to the boy, "You shouldn't talk about people's eyes like that." "Why not?" I heard the boy ask. And then the door shut, and I didn't hear her response.

But it made me wonder. "Why not?" What is it about us that would rather pretend that we are all the same, when we aren't? That disabilities do not exist, when they do? That grieving a mother might also be bringing her great joy, and a new laugh, all at once?

Nouwen writes of his first experiences in the special needs community. His words today remind me of the little boy: "[Handicapped people] proclaim loudly the preciousness of life and encourage us to face reality with open eyes and outstretched hands. [They invite us] to places of celebration in which the certainty of the present is always much more important than the uncertainty of the future. [They] are witnesses to the paradox that the most unlikely people are chosen by God to make us see."

Make us see. Moriah, I know, is making me see in new ways. When she is seen, and in some encouters, when she is seen for WHO she is and not just what she "has," there is great potential there for me to understand exactly how God sees me. For who I am, and not what I have. The girl with the strange eyes. A beautiful tradeoff, if it means being seen more fully, and loved more dearly.

at Grammy's request

Dear Great-Grammy, Mommy tells me you were asking for more videos of me. We took some new ones today...me by myself, me with Jackson, and me with Mom. I hope you'll hear my laugh in the video with Mom. I laugh a lot now! I hope I get to see you this week! Love you, Moriah