After much harassment encouragement, I entered the blogosphere to document the delightful (or otherwise) and unexpected moments of my younger daughter's life. Hannah was born in 1998. She surprised us with her extra chromosome, and continues to surprise us with her humor, intellect and obstinacy. She takes our breath away. As my elder daughter once wrote, when Hannah was born, our family went from ordinary to extraordinary.
Today is your celebration! Your Mom and Dad have planned a wonderful day to celebrate your life--bubbles, flowers, children, good food. The Botanical Gardens have never seen such a sight! I am excited to meet so many of your friends and supporters. I wrote you this letter this morning. I tried for days to write to you, but I just stumbled around. But this morning, I finally could tell you much of what I've been thinking.
I don’t quite remember when I first met you. I know that I first discovered your wide grin and advanced mischief skills through your mother’s blog. When I found out you lived nearby I was thrilled to meet you and your family.
While you might not remember me, I will always remember you. You and I didn’t spend much time together; maybe a game of patty-cake at a Down syndrome meeting, or a quick tickle when I stopped by your house. If I had a camera, you’d instantly put on your charm.
I got to know you mostly through the stories that my daughter, Miss Kate, would tell me. Boy, does she love you! She’d come home from caring for you and just beam. I can’t count the times she’d say, “Love that girl.” You’re one of the reasons she is planning on adopting children with Down syndrome.
Soon after Miss Kate left to work in the Peace Corps, you got sick. I eventually got my turn to help care for you. That’s when you worked your most powerful magic. How in the world were you, at age two, able to become a community organizer? I saw how you brought people in to you—from the housekeeping staff, to the powerful doctors, young children, college kids, to grandparents—all were drawn in to your circle of joy. You’d give a grin and bold wave on good days, and on bad days you’d give a sideways glance and the best wave you could manage.
Lois, you showed everyone how to be honorable and dignified. You stayed true to your mission of bringing love and joy to the people around you. The other day a friend of mine said she wished she could have met you. My instant response was that you’d have enchanted her. I think you are enchanting people still, pulling them in and teaching them how to be loyal and true.
Lois, I have been trying to figure out what impact you’ve had on my life. If I’m honest, I have to say that I don’t yet know. I think that it’s too early to say. You’re still making differences in my life and in others. I see how you’ve influenced generations in my family—from my parents to my own children. I imagine that my grandchildren will hear stories about you, and you will be still impacting lives.
You pulled my friends in closer to me. Introduced new people into my life. Gave me the opportunity to bake a whole bunch of peach cobblers, both celebratory and mournful. In your honor I think I’m going to have to change the name to “Bean Cobbler”, though I have to say, people might be a little afraid of a bean cobbler.
We spent the day at Kennedy Krieger in Baltimore; Hannah taking cognitive and memory tests, while I filled out paperwork and parent surveys. One would think that a few hours of that would put Hannah to sleep. But she came out bouncy and cheerful.
We had a late lunch and then met with Dr. Capone and his research assistant. There was one more questionnaire, and a little review of the study requirements (keeping track of dosing and any side effects or illnesses). I thought they were going to administer the first dose while we were there. The original study paperwork said that Hannah would get the first dose and then she'd be monitored for 4 hours. I was expecting to spend another night in Baltimore! Apparently, some subjects get a bit nauseous as they adjust to the medication (or placebo...). But they lowered the initial dosing level, which has reduced the nausea. So we start tomorrow morning.
The first 2 weeks are a very small dose-- 0.38 ml twice a day--then it's doubled for the following 18 weeks. We should be done with the study on July 1st.
Today's visit was a little dull. I think I was expecting a little more fanfare or excitement, but they just handed over the bottle and medicine syringes and that was that.
The only really interesting part was when Hannah surprised Dr. Capone with her new facial hair.
(I think she looks like Rich Uncle Pennybags from Monopoly)
I think this picture is also the debut of her new "teen-like" glasses! She's been updating--hair styles, glasses, shoes/boots. I can usually influence her choices in clothing if I offer things like, "Would you like to wear this gray t-shirt, or the stylish green one?" She always goes for the "stylish" choice. Of course, it would be helpful if I could actually be sure I was leading her in the right direction...
To read more about the research study, go here
Today was Hannah's first day of Special Olympics swimming this year. She participated last year, and was excited to do it again. She's been taking private lessons all year, and she was proud to show off her new butterfly stroke to the SO coaches.
We discovered last year that SO swimming in our town is basically supervised swimming--there is little coaching in terms of stroke development. The athletes are told what stroke and how many laps to do it. They do make the athletes swim for most of the hour, so Hannah is pretty worn out by the end of the session.
I got her settled in today, and then ran to the store across the street to get the last items Kate wanted to bring back to Jordan (tomorrow! *sniff sniff*). I came back to the pool about 10 minutes before Hannah was done. I got to see her backstroke (not her favorite), and got to see her crash into another person who also was doing the backstroke in the opposite direction in the same lane. There were about 5or 6 swimmers in that lane. Seems crazy to me--there were other lanes available.
When practice was over, we met on the bleacher seats. She grumbled about the crowded lane. She's pretty spoiled at her lessons where she has the entire pool to herself (different pool). So we talked a bit about that. She was rather surly.
As she was drying herself to put on her sweats, she was complaining and arguing with anything I said. I had already mirrored her feelings back to her ("I saw you bump into that girl. I bet that was frustrating."). She was grumbling about everything, and getting mad at me for just breathing (don't you love adolescence?).
Then the head coach called everyone's attention ( a good 45 people or so). She went through a few items of note, and then said, "Oh, and Hannah, you can't do the butterfly. (hesitation) It's not that you can't do it, but you can't do it for Special Olympics because of your neck."
Hannah doesn't know anything about her neck. That's because I haven't told her that she has borderline AAI. I'm counting on her "outgrowing" it. She didn't have it when was was little, but when she was 10 she was in the borderline range. And the pediatrician said we'd re-test her after she's done growing (almost done! 5'3" now). I totally forgot that SO was so stringent about AAI. My bad. All this time learning butterfly, and now she can't race it. Ugh. Hannah asked what did Coach say about her butterfly? So I had to give her a short explanation, and she was satisfied enough. She went back to her previous grumble.
I told her I'd wait for her near the pool. It's sometimes better to put myself in time-out. She got her stuff together and came down to meet me, all the while mumbling under her breath.
I don't remember what she said, but it was something impolite. So I told her that I wished that she'd just say how she felt, rather than just being mean and rude to me. "You can say that you're frustrated or mad, but you shouldn't just say mean things to me when I haven't done anything." Silence.
So we got in the car. It's a 30 minute drive home. We had 20 minutes of silence (fine by me!).
Finally she said, "I'm sorry I said that thing to you."
Me: "What thing?"
I was thinking that she didn't really understand why I was unhappy, so I was curious about what she thought she had done wrong.
Hannah: "When we get home I'm going to write a story about being rude. And the moral of the story is that you have to say you're sorry to your mom."
This totally made smirk, but I had to hide it. I never heard her say "the moral of the story" before--we don't talk about that at all! I think she picked it up from a fable here or there. It was really cute.
I don't think that she really knew what happened. She was just giving me a blanket apology to make things better. (and it worked)
Anyhow. She's in the tub soaking the chlorine out of her system, and then has plans to finish off the cheese doodles. I don't think the story will be written, but at least it's the thought that counts.
Kate is off to Williamsburg for the day/evening. Tomorrow afternoon we deliver her to the airport. She'll finish her time of service and be home near the end of the year. She's sorry she's not able to attend the Celebration of Lois' Life, which is next Saturday, but she is so happy she got to see Lois earlier this week.
We have great sadness about Lois' death, and meander through our feelings up and down at random times during the day. I can only imagine how Catherine and Jay are navigating through this. Impossible.