Sept. 26, 2015, 1:24 a.m.
Aila's had a good twenty-four hours. She woke up early (for her) this morning at about 8am. Usually, I can spend mornings with her these days, but today I had to head to a work retreat. She said her belly hurt, and I was worried as she'd had another general anesthesia spinal tap the day before. She seemed scared and wanted me to pick her up. So I did, but it's pretty hard to get ready for work with an attached two-year old who screams if I try to put her down. So Brian thought on his feet, stuck her in the running stroller, and took her on his morning jaunt around the neighborhood. I was gone by the time they returned, and she spent the day playing, sleeping, and sometimes even smiling with her brothers and grandfather. Tonight, after we were all home, she told me some stories about her day and gave me some toys to give to baby. Declan (affectionately "baby") is trying desperately to crawl, and when he tried tonight, Aila followed suit. She moved from her stomach to all fours, which is the most movement in almost two months. We all cheered.
It's time to cut her hair. There's not much left, but the chemo is somehow ravaging the existing hair on her head, which is lifeless and clumps into a nest within hours of a bath. Brian and I are resigned to this task this weekend. I am also very preoccupied and curious about her pain these days. She's always been such an easy-going baby, and I think that I have mistook her fortitude in the face of her pain for a lack of pain. instead, I think she complains only when things are really, really bad. And by the time she's yelling, or telling me her legs hurt, or her belly....things have probably gotten really painful. We give her oxycodone regularly, and this seems to help some. As well as some acid-reducing medication for her stomach aches. Adults can describe what hurts, when fatiugue hits, what's too much. She doesn't have the words, and I suppose we don't ask sometimes, primarily because the positive endorsement of pain is sometimes too scary and overwhelming...New goal is to ask Aila more often whether and where it hurts. If she can handle it, I can handle it.
Today, my work retreat was at a venue that overlooks all of the Bay Area. It was also an especially clear day, allowing for visibility to San Francisco and the entire Bay. A colleague brought his bagpipes, and during a break he played into the sky, into the void, down the hill toward the Bay. I cried a bit, realizing that I can go to work, go through the motions, playact "normal." But nothing is really normal, and everything, even bagpipes, makes me think of my baby Aila.
Sweet dreams, my girl. Your smile is everything.
Fight.
Love, Mom
Comments
Gabi 9 years, 2 months ago
You are in our thoughts and prayers daily. Nothing any of us say can make this easier. We can just pray that things go back to normality - and not this new normality. With much love - Gabi, Tom and Elizabeth
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