Running update:
8/25 18.2 miles in
3:00:02
8/28 7.2 miles in
1:07:00
8/30 7.5 miles in
1:12:55
The 20K New Haven Road Race this weekend! This is the fifth NHRR that I’m running for
the Children’s Tumor Foundation, but I had run it once before twenty-something
years ago. I recently found a picture of
myself at that race, at the tender age of 19:
Jane update:
School started this week!
Jane started first grade at a new school, and took the bus for the first
time. All the kids seemed to have a
great first day. We’re looking forward
to a wonderful year.
NF update:
At orientation Jane’s new teacher asked me how I wanted to
handle inquiries from other children about Jane’s tumor. I told her I was
hopeful it wouldn’t be an issue, but that if another child did ask, Jane may be
able answer for herself. That night I
asked Jane what she would say if someone asked why she took medicine. She
said, "For my cheek". I asked why she took medicine for her
cheek. She said, "Because it's puffy." I asked if she
knew why it was puffy. She said, "Because I have a
boo-boo?" I asked her if she remembered us talking about NF (which
we have done in the past), but she said no. I told her if someone asked
her why her cheek was puffy, she could say, "That's the way it
grew." I told her the reason was because of NF, which is a condition
that can make people's cheeks puffy or can cause other bumps. Later, I
asked her again what she might say if someone asked her about her cheek, and
she said, "That's the way it grew."
Well, I didn't think the issue would come up again so soon, but when I picked Jane up after the first day of school an older boy (maybe 3rd or 4th grade) asked me (and Jane), "What's wrong with her cheek?" Jane immediately answered, "That's the way it grew!" (She's such a good girl!) Unfortunately the little boy persisted (innocently), "But why did it grow that way?" I confess I wasn't prepared! I tell adults about NF all the time, but wasn't entirely sure how to explain it to another child, especially with Jane present. I said, "Well, she has a condition that made her cheek grow that way." He accepted this answer, and said, "That's too bad."
(As an aside, during my conversation with Jane the night before, she said, "Maybe I could puff up my other cheek to make it even." I told her absolutely not! I told her her cheeks were beautiful as they were, and not ever to believe anything different.)
I think I was spoiled having Jane in the same school for so many years! I thought I was prepared for this transition, but obviously not. Still lots to learn.
Well, I didn't think the issue would come up again so soon, but when I picked Jane up after the first day of school an older boy (maybe 3rd or 4th grade) asked me (and Jane), "What's wrong with her cheek?" Jane immediately answered, "That's the way it grew!" (She's such a good girl!) Unfortunately the little boy persisted (innocently), "But why did it grow that way?" I confess I wasn't prepared! I tell adults about NF all the time, but wasn't entirely sure how to explain it to another child, especially with Jane present. I said, "Well, she has a condition that made her cheek grow that way." He accepted this answer, and said, "That's too bad."
(As an aside, during my conversation with Jane the night before, she said, "Maybe I could puff up my other cheek to make it even." I told her absolutely not! I told her her cheeks were beautiful as they were, and not ever to believe anything different.)
I think I was spoiled having Jane in the same school for so many years! I thought I was prepared for this transition, but obviously not. Still lots to learn.
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