Sleeping

At 9:00 this morning a nurse came in announcing it was time to take Maisie to her first appointment. She was shocked to see that Maisie was still in her pajamas, her hair a wreck and her teeth unbrushed, sound asleep. But I wasn't going to wake her. Not until I absolutely had to.

The change in Maisie has been so gradual I sometimes forget how tiny she is, how much she is regressing. She used to run and jump and skip and eat six or seven or eight meals a day. She was a happy, chubby baby. Recently, eating is hard, much less running or jumping. Even on days when she is strong, her coordination is off. She feeds herself like a baby, missing her mouth and getting yogurt or banana everywhere. She's losing her fine motor skills.

The research center is more like a cozy hotel than a hospital. Unless absolutely necessary, the beds are more like real twin beds. The rooms are built to accommodate one or two families, which means two child-sized beds or cribs for the child patient and two twin beds for the parents. You can request to be put in a private room, but its more expensive and Maisie loves to make new friends, so we're sharing our room with a little girl, J, and her mom, H. This girl is completely nonverbal. She has never spoken a single word in her four years, but the connection between J and her mom is incredible. They both speak sign language, but more often than not J communicates with her mom through the most expressive eyes and faces I have ever seen. All she need do is look at H the right way and her mom understands -- she needs the bathroom, or food, or whatever else.

We were talking, H and I, about our children last night while the girls were sleeping. They have no idea why J cannot speak. All her tests indicate that, physically, she has no barriers, and yet she cannot coordinate her lips, tongue, teeth, cheeks, etc. to make sound come out. She does not even cry, but already I have seen her sit, focused, staring at nothing while she manipulates her tongue, jaw, and lips. "She's trying to speak," H said to me. "But she can't. And we don't know why."

Watching J and Maisie last night, sleeping right next to each other in their tiny beds, I realized with full force how close my own sweet Maisie came to this same fate. When she was first born, the doctors had no idea how extensive or crippling her neural damage might be. We were warned that she might never walk, speak, hear, or develop fine motor skills. And when she did all of those things and more we felt so blessed. We thought we were out of the woods. But we weren't, because here we are. Maisie had all of those skills and now, slowly, one by one, she is losing them. Why? I don't know for sure. Will they come back? I have no idea.

She seems so little compared to J. Her bones seem thinner, her body frailer. I've been in such denial for so long. In November I signed her up for swimming lessons at the Y at the suggestion of the physical therapist, and the clerk who I worked with didn't believe me that she was really four, not two. She's little, skinny, frail. The research center loans wheelchairs to kids (like Maisie) who meet certain requirements. <--- They gave us this thing when we arrived yesterday and I couldn't put Maisie in it. I used it to haul our luggage upstairs. But this morning, the nurse insisted. She looked so tiny. She literally took up maybe a third of the seat, and slumped agains the side of the chair. Her feet didn't reach the footrest. Before J and H left for their appointment, H suggested we take the girls out to lunch afterward. I didn't know how to explain to her that today might me a day in which Maisie can't eat. It might be a day just like the other night, a constant battle between hunger and exhaustion.

In other news, our first appointment here went well. Every child is assigned a care team composed of the most relevant doctors for their particular symptoms. For Maisie that meant a neurologist, an orthopedist, a speech pathologist, a rare disease specialist, and a chemist who performs the actual genetic tests. We already have connections with these kinds of specialists at home, but the research center doctors know each other well and have systems in place to communicate so tests and treatments do not overlap. The doctors made a nice long list of all the specific diseases we will be testing for and how they'll test. Our next step is a preliminary round of samples (blood, urine, tissue, spinal fluid) which they use to begin the DNA and chemical testing. They might take as many as three or four rounds of samples to make sure the results are accurate.

We've been here for less than twenty-four hours and already I'm exhausted. I'm tired of explaining. I'm tired of showing the doctors her limp fingers and the video I took the other night when she was too tired to eat, to hungry to sleep. I want an answer, and I want to go home.