Yes! Jeff and I got married THREE DAYS AGO. The first of July! It was wonderful! Mom, Dad, Maisie, Jeff, Jeff's sister, Jeff's parents, my sister Miranda (who says hi) and a couple of our very close friends all went to the church for a very simple ceremony. Afterwards we had a picnic in my mom's huge backyard. Basically everyone I know was there at some point. My friend Stella, who I think has posted on the blog, made us a four-tier cake with layers of vanilla and chocolate and hazelnut and caramel frosting and real flowers. There were ribs and hamburgers and hot dogs and little children who ran through sprinklers and got ketchup and cake and frosting everywhere.
And Maisie had a wonderful time. We set up a blanket and her favorite bouncy chair, which looks like a ladybug (without the bar though). She sat in the chair and watched the activity and laughed. We couldn't get her to take any steps on her own, but she walked holding someone else's hands. Most of the time, though, she lay sprawled on her blanket or in her ladybug, her fingers in her mouth and her big eyes surveying her kingdom. When the time came, I fed her like it was any other day. A lot of small cousins and grand-cousins (second cousins?) asked a lot of strange and probably rude questions, and I answered all of them.
It's hard to remember sometimes that most people feed their five-year-old peanut butter and banana sandwiches and carrot sticks and juice boxes, that most five year olds run and squeal and play and have long since outgrown ladybug bouncy chairs. In the past few days, surrounded by love and friends and healthy little five year olds, I have remembered how extraordinary my daughter is, how far from usual she is. My cousin Sarah has a five-year-old boy named Hank and my cousin Lily has a two-year-old boy named Joey. And despite being so much closer to Hank's age, Maisie looks so much more like Joey. Even he leaves her in the dust in terms of running and shouting. She could barely keep up with the one-year-old baby with whom she shared her blanket until he discovered her g-tube and became determined to pull it out. When I want to show you pictures of my girl, I show you pictures like this, which are heart-breakingly close to reality (except without the enough-confidence-in-standing-abilities-to-take-a-picture-and-not-constantly-hover-behind-her-in-case-she-falls). I'm trying to find words to convey the sense of confusion and failure that come with holding your tiny, frail little girl up while her contemporaries run and scream. When I hold Maisie she clings to my shirt or my arm with weak fingers. Her legs don't grip my waist like most babies' would, and she often won't hold her head up, instead letting it droop against my shoulder. And then I hold Hank or Jessie or Rachel and realize that they, while being within one year of her age, are such completely different entities to pick up. For one thing, You would almost never hold a four, five, or six year old on your hip. But when you do they are heavy but not as heavy as they should be. Their strong legs and trunks and arms support themselves but not Maisie.
That's not to say she isn't getting stronger, oh so much stronger! Every week we meet with Drill Sergeant June. Physical therapy these days is not so much the therapy itself but a kind of weekly progress assessment. The actual therapy happens during the week when Maisie and I practice her three skills: sitting, standing, and walking. When we first started, she could barely stand to practice sitting up for five minutes. And she would fall over every couple of seconds and I'd have to prop her back up. Today, however, she can sit unassisted for a whopping thirteen to fifteen minutes at a time! Standing is somehow harder than walking in the walker, but we're up to a minute or so unassisted, and five to seven minutes assisted (holding hands or the table or in the walker). In the walker she can walk for five solid minutes without stopping. Unassisted she's taken probably a total of a two dozen steps in three-to-four step increments. But holy cow. How far my angel has come.
Overall I am happy. I am at peace. I am relieved. Our life is not where we thought it would be, but it is stable. Maisie is not as big and strong as we had hoped, but she's not losing weight and not losing skills. My tendency is to have such incredibly high standards for her and myself that I struggle so much to breathe and remember how wonderful this summer has been.
It's a good life. It is.
And Maisie had a wonderful time. We set up a blanket and her favorite bouncy chair, which looks like a ladybug (without the bar though). She sat in the chair and watched the activity and laughed. We couldn't get her to take any steps on her own, but she walked holding someone else's hands. Most of the time, though, she lay sprawled on her blanket or in her ladybug, her fingers in her mouth and her big eyes surveying her kingdom. When the time came, I fed her like it was any other day. A lot of small cousins and grand-cousins (second cousins?) asked a lot of strange and probably rude questions, and I answered all of them.
That's not to say she isn't getting stronger, oh so much stronger! Every week we meet with Drill Sergeant June. Physical therapy these days is not so much the therapy itself but a kind of weekly progress assessment. The actual therapy happens during the week when Maisie and I practice her three skills: sitting, standing, and walking. When we first started, she could barely stand to practice sitting up for five minutes. And she would fall over every couple of seconds and I'd have to prop her back up. Today, however, she can sit unassisted for a whopping thirteen to fifteen minutes at a time! Standing is somehow harder than walking in the walker, but we're up to a minute or so unassisted, and five to seven minutes assisted (holding hands or the table or in the walker). In the walker she can walk for five solid minutes without stopping. Unassisted she's taken probably a total of a two dozen steps in three-to-four step increments. But holy cow. How far my angel has come.
Overall I am happy. I am at peace. I am relieved. Our life is not where we thought it would be, but it is stable. Maisie is not as big and strong as we had hoped, but she's not losing weight and not losing skills. My tendency is to have such incredibly high standards for her and myself that I struggle so much to breathe and remember how wonderful this summer has been.
It's a good life. It is.
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