The good thing is that there is little to report from the front lines in Dayssi's battle with ALL. She continues to do well, endured her monthly IV chemo on Monday without even a whimper ("I'm not gonna look and I'm not gonna cry!"). Today she is a little under the weather and the steroids haven't quite kicked in yet, but I feel confident that she and we will tolerate whatever is coming this week, and that by this time next week she'll be well on her way back to herself.
The Make a Wish folks came by the other night to ask Dayssi whether she has a special wish. She said that she wants to meet a real ballerina. They asked her what that means, and learned that she wants to go to a real ballet and meet a real ballerina and see the ballerinas putting on their costumes. The volunteers looked undaunted -- it seems doable and they are looking into it; no promises yet. They asked her for a second wish as a back-up, but she said she couldn't think of one. So we've been doing a lot of fantasizing lately. India suggested wishing to have one of Dayssi's baby dolls turned into a real, live baby! India is into magic lately and I think she's just curious to know if they could actually pull that off. But nothing else has captured Dayssi's dreams yet, besides the ballerina.
As I write this, I'm reminded of something that Dayssi said to me during the first week of her treatment, when she was still in the hospital and enduring all kinds of torture. I was holding her on my lap, trying to convince her to take one of her yucky medicines so that I wouldn't have to pinch her cheeks and force it down. She looked out the window and said, "If I was a bird, I would fly away from here." It is one of the only things about that first week that I remember.
Tuesday, March 27, 2007
Saturday, March 17, 2007
Birthday and update
All is well. India turned 6 on Wednesday and we've been enjoying ourselves. It is high season on India's social circuit -- I don't remember what happened in early June of 2000 (well, I do remember some things!) but apparently there were many, many children conceived at that time. Birthdays, and birthday parties, galore!
Dayssi is feeling great, attending school and swimming class with increasing enthusiasm. She has a wonderful friendship blossoming with a little friend from school. It is one of the sweet, compassionate girls I wrote about on the mud-fall day. Dayssi and I both adore this little girl, and the feeling appears to be mutual (at least where Dayssi is concerned!). The friendship is a beautiful, beautiful gift, to Dayssi and to me.
Dayssi's not sure about ballet these days -- she feels very shy there. But we are still offering the classes. She has a performance coming in May, and I am hopeful that she'll be up for it. They are doing "I Just Can't Wait to be King" from the Lion King. No pressure though. She has plenty on her plate for now.
Grandma came to surprise India last Monday and has spent the week with us. It has been great to have her here.
Will try to post some pictures soon -- Jim is directing a 2-week exec ed program and hasn't been around much. We need his technical expertise to pull that off.
Dayssi is feeling great, attending school and swimming class with increasing enthusiasm. She has a wonderful friendship blossoming with a little friend from school. It is one of the sweet, compassionate girls I wrote about on the mud-fall day. Dayssi and I both adore this little girl, and the feeling appears to be mutual (at least where Dayssi is concerned!). The friendship is a beautiful, beautiful gift, to Dayssi and to me.
Dayssi's not sure about ballet these days -- she feels very shy there. But we are still offering the classes. She has a performance coming in May, and I am hopeful that she'll be up for it. They are doing "I Just Can't Wait to be King" from the Lion King. No pressure though. She has plenty on her plate for now.
Grandma came to surprise India last Monday and has spent the week with us. It has been great to have her here.
Will try to post some pictures soon -- Jim is directing a 2-week exec ed program and hasn't been around much. We need his technical expertise to pull that off.
Monday, March 05, 2007
Ouch!
Today is one of those days -- we had a little mishap this morning and I can still feel the sting. Dayssi was in a great mood today, excited about going back to school (it has been weeks) and feeling good. I was excited to have a morning free, to ride India to kindergarten on the bike, take India to the hospital for a relatively harmless finger poke, and then take her to school and hang around long enough for her to start getting comfortable again.
She was all excited on the way to school, and we agreed that I would stay until snack time -- specifically, when the teacher starts to read a book to the snack table -- and then I would leave her there. As we got closer to the classroom, Dayssi got a little more quiet, asked for her nana, and wanted to be carried in. She was feeling shy, hiding behind me, trying to walk between my legs holding both hands. But we got ourselves settled and skipped out to ride the swing, which is one of Dayssi's favorite activities at school.
We got to the swing area where, because of the recent rains, there were big red boards (like bridges) underneath each swing so that the kids wouldn't have to stand in what were, last week, big puddles of water. Now they are little shallow pools of thick mud. As I was saying hello to a teacher, and Dayssi was climbing onto the swing in some kind of silly way, she somehow fell off the swing and landed hard, face-first, in the thick mud underneath the red board. The first thing I heard was the dull thud of her forehead hitting the ground -- a truly horrifying sound for anyone trying to care for a child -- followed by a loud heart-breaking wail.
Is there no dignity for this child? Is it not bad enough that she has to miss out on so many aspects of what she should be enjoying at this time in her life, especially regular school and playmates, comfort with a social situation at school that is truly hers, where she feels she belongs, and that she has to tolerate regular hospital visits, pokes, gross medicines and their many side effects, when she sees clearly that no one else has to put up with this crap? That she knows she is seriously ill and that it makes her different? She fell off the swing on her face in the mud today at precisely the moment that was she trying to let go of her self consciousness, trying to act like a regular kid who belongs in that yard on that swing. Dammit.
I scooped her right up and held her on the grass, while she sobbed with her little muddy face buried in my sweatshirt, and helped her clean up with a warm rag and an owie sponge for the abrasion above her eyebrow. Some of the kids came around -- in particular, the same sweet girls who are always watching her and asking about her, who comment gently on her hair and ask why she has a pacifier, who seem worried about her, who want to be nice but usually talk more to me than to her. And she started to talk to them about how her dad had an owie on his forehead last week but he didn't cry. Soon one of the teachers invited her to come and plant some seeds, which she did, and then very quickly seemed to recover. She was ready for me to go at snack time. And when I got to the office, I just bawled.
She was all excited on the way to school, and we agreed that I would stay until snack time -- specifically, when the teacher starts to read a book to the snack table -- and then I would leave her there. As we got closer to the classroom, Dayssi got a little more quiet, asked for her nana, and wanted to be carried in. She was feeling shy, hiding behind me, trying to walk between my legs holding both hands. But we got ourselves settled and skipped out to ride the swing, which is one of Dayssi's favorite activities at school.
We got to the swing area where, because of the recent rains, there were big red boards (like bridges) underneath each swing so that the kids wouldn't have to stand in what were, last week, big puddles of water. Now they are little shallow pools of thick mud. As I was saying hello to a teacher, and Dayssi was climbing onto the swing in some kind of silly way, she somehow fell off the swing and landed hard, face-first, in the thick mud underneath the red board. The first thing I heard was the dull thud of her forehead hitting the ground -- a truly horrifying sound for anyone trying to care for a child -- followed by a loud heart-breaking wail.
Is there no dignity for this child? Is it not bad enough that she has to miss out on so many aspects of what she should be enjoying at this time in her life, especially regular school and playmates, comfort with a social situation at school that is truly hers, where she feels she belongs, and that she has to tolerate regular hospital visits, pokes, gross medicines and their many side effects, when she sees clearly that no one else has to put up with this crap? That she knows she is seriously ill and that it makes her different? She fell off the swing on her face in the mud today at precisely the moment that was she trying to let go of her self consciousness, trying to act like a regular kid who belongs in that yard on that swing. Dammit.
I scooped her right up and held her on the grass, while she sobbed with her little muddy face buried in my sweatshirt, and helped her clean up with a warm rag and an owie sponge for the abrasion above her eyebrow. Some of the kids came around -- in particular, the same sweet girls who are always watching her and asking about her, who comment gently on her hair and ask why she has a pacifier, who seem worried about her, who want to be nice but usually talk more to me than to her. And she started to talk to them about how her dad had an owie on his forehead last week but he didn't cry. Soon one of the teachers invited her to come and plant some seeds, which she did, and then very quickly seemed to recover. She was ready for me to go at snack time. And when I got to the office, I just bawled.
Friday, March 02, 2007
Rock and Roll Bunk Bed
Dayssi had vincristine on Monday, and she is just finishing off her monthly steroid pulse; doing fine. India is also very well. Last night as I was on the lower bunk with Dayssi, trying to wake her to take her pill, the bunk bed started to shake and move for about 5-7 seconds. I was thinking, "What the heck is India doing up there?" It felt like she was jumping on the bed, but I knew she was asleep. After we got the pill down I came from te girls' room into our bedroom and Jim asked, "Did you feel that earthquake?" Sure enough. Biggish one, centered in Lafayette, which is quite a bit north of us. The girls slept right through it.
It has been a busy week. Jim and I threw a dinner party for some LCC alums on Tuesday, had our regular date night (sushi with a friend) on Wednesday, and I am teaching this weekend in a program called "Women Do Lead" for Stanford alumni. We had the kick off today and it was pretty exciting. I love my job.
It has been a busy week. Jim and I threw a dinner party for some LCC alums on Tuesday, had our regular date night (sushi with a friend) on Wednesday, and I am teaching this weekend in a program called "Women Do Lead" for Stanford alumni. We had the kick off today and it was pretty exciting. I love my job.
Subscribe to:
Posts (Atom)