Nov. 2, 2015, 1:43 a.m.
It's raining out as I write this. When it rains, I feel such a sense of peace, probably because it reminds me of being in the East.
Aila's hanging in there. We think she has a bit of a virus right now, but no sign of a fever yet (thank goodness). She had a pretty bad day, with a ton of discomfort and frustration. But we handled it, taking the kids to the Bay for a 6 1/2-mile run with the strollers. Each of us kind of loses our cool at different points, I'd say. I have a ton of trouble when all three kids are whining and crying (which is frequent these days). Brian has trouble when things don't go as planned (which is also frequent these days). Aila has trouble when she feels sick, or at least that's our working hypothesis. Zander has trouble when he feels that he's not getting enough attention. And Declan...he seems to have trouble when he doesn't have something to eat!
We are in a pediatric cancer bubble. Because of this, we're finding it very confusing to integrate with the world. We completely understand that the entire wide world is not thinking about our daughter's cancer. I get that everyone I work with is not walking around with timelines of chemo protocols or when her last fever was running through their brains, but I think it somehow hurts in a very specific way when we realize that there is no forum at all where we can talk.
But then, we end up feeling selfish. And honestly, we are entirely, 100%, without any doubt, absorbed by Aila and our family these days. We don't think about anyone else's struggles or accomplishments or goings-on. (For me, the only exception is work, where I engage with other people's lives as part of my paycheck.) Maybe this is the wrong way to be going about Aila's illness, I don't know. When others come to us with goings-on in their lives and we find ourselves not caring one bit...we feel bad about ourselves. Like we're just wallowing in our own struggle. Many people, doctors included, have said to us that our 2-year-old has the "good kind of childhood cancer." I guess they're trying to comfort us, but instead we end up feeling guilty for walking around with as much sorrow, pain, and grief as we often are. Long-term prognosis is one thing, and day-to-day process is quite another. I'll never really get used to my daughter yelling in pain, even if it does go on for close to three years.
I'll close this post with a comment, spoken early this weekend, from our tiny cancer patient, highlighting the challenge of balancing parental insight and grief with the reality of being two:
Aila: My hair is almost gone.
Mom: It is almost gone, sweet girl.
Aila: I need new hair.
Mom: You do need new hair. What color hair do you want?
Aila: [with a cute, coy smile] I want blue hair.
Fight, baby girl. We can all have blue hair when you are better, I promise.
Love, Mom
Comments
Angela Tana 9 years ago
She's so cute Vicky!!! What a little champion she is. What an insane amount drugs she has to take....how on earth can a little body take all of that.....I just don't understand how we haven't figured out a better way to treat this. I hope your little girl can smile today. That smile is everything.
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