April 8, 2016, 11:37 p.m.
8/8/15 - 4/8/16. Today marks exactly eight months since our first metamorphic trip to the Stanford ER. Feels like yesterday, but somehow 245 days have come and gone. Stanford doesn't have a pediatric ER, but they have a separate waiting room for kids and families, where Aila and I sat and waited for several hours. I remember everything about that room, like it was yesterday that we were sitting there. There was a television on with a no-name cartoon. A little boy with a cast on his arm sat next to his father watching the cartoon. There was also a mother and her daughter sitting close to us. I remember thinking that it seemed like they had been to the ER a lot, because the mother seemed at ease and had even brought snacks. At the time, that confused me. ER means emergency, after all...who has time to pack snacks and be calm? Now, I am that mother.
Declan was an eight-month-old baby then, and now he's a 16-month-old toddler who dances on command to the alphabet song. Zander had just turned four, and now he's nearing five and getting ready for kindergarten. Such a huge part of their little lives have been lived in hospital rooms and amidst the chaos of their sister's leukemia. When I think about it, which I do every day, I simply feel crushing grief.
Truth be told, I have been making excuses to myself for not writing as often lately. Too busy, too exhausted, too much work. All true, but only half the story, if I'm honest. There's poetry in crisis. It's easy to feel and write after a 2am fever trip to the ER or a 14-day hospital stay or violent, spontaneous vomiting in Whole Foods. (Wait, actually, I forgot to write about that, which happened just this past week. Zander had to put his endamame back before the Cosgroverstreets fled the scene of the crime! Anyway, I digress...). But at their core, cancer and its close cousin chemotherapy embody sickness. Ill, bedridden, nauseated, and feeble are all fair descriptions of my daughter in her last eight months. Whenever I think about being sick, I think back to a 22-year-old Victoria, living on Liberty Avenue in Somerville and working at Mass General Hospital, who thought she was better than that year's flu shot (for the record, I still think the flu shot is a pile of bologna most years). It was probably 1999, and I got SICK. For maybe three or four days, I could barely leave the couch or really even eat. But then, I felt better and stronger, and life resumed. What's crazy to me is that I'm almost 40 years old, and I STILL remember that sickness. I'm absolutely breathless when I realize that my daughter has probably felt like this 70-80% of the time since last August. Agog, really.
What do I remember about the flu of 1999? Laying on the (inherited, never-cleaned) couch (which, now that I think about it, possibly gave me the flu in the first place!), sleeping, and watching old-fashioned network television. Occasionally vomiting, taking a lot of over-the-counter medication, and asking for a ton of help from my roommates. I don't think I showered much or changed my clothes at all, and I ate very little. Substitute Netflix and Youtube for network television, add a ton of crying, diarrhea, constipation, and flatulence, and substitute roommates for "everyone," and I think we've pretty much described a majority of Aila's illness since August 8th. Most days, she doesn't wake up until after 10 or 11am. And often, when she wakes up, she doesn't want to leave the bed at all. Most days, we give her somewhere between 4-10 different doses of medication--oxy, ativan, ondansetron, lactulose, simethicone. She's learned how to grasp the syringes with her teeth and administer her medications on her own with only one hand. Most days, she wants to lay on the couch or in "Mama's bed" at least 60-70% of her waking hours, either staring at the ceiling, "watching pictures on the phone," or using Daddy's or Mama's "pad." She demands different types of food from her caregiver (Wampa, Mom, or Dad), but she rarely takes more than one or two bites. We can get her to the park about 2-3 times a week.
Poetic, right? Ha! Drab and dreary. Insipid and bland. Garden-variety banality and sameness. Day after day after day. All six of us (my father, included) responding day after day to the predictable unpredictability of her response to her most recent chemotherapy poison. Pirate (Jake and the Neverland flavor) on Netflix, Spongebob on Hulu, games on Mama's pad, pictures on Daddy's phone. Goldfish, sausage, soup, goldfish, sausage, soup. "My belly hurts. I want medsin..." Humdrum.
And this is just the way it is right now. Do not mistake my exhaustion for self-pity or complaining. After all, it's easier to write about pain. When she gets better and stronger (which WILL happen), it will in some ways be a bigger challenge to leave the suffering in the rearview mirror, I imagine, as it's been so potent and transformative. The current problem is that it's not done by any stretch of the imagination, but we acutely sense that the world wants it to be over. "How is she? Hanging in there?" I feel bad telling the truth (which I feel negligent if I do not do, even in short form). She's not good. We're getting by, but we're not good either. I know that the world is NOT thinking about us most of the time (which feels normal but lonely just the same). But when it is, we feel like everyone's ready to schedule the Make-a-Wish Disney trip and chronicle Aila's feel-good preschool debut. I'm a people pleaser and an emotion reader, at my nucleus, and it's painful to know that the perpetuity of Aila's contest exasperates those who care for us and love us. Even if we don't have time to tell you or thank you for your love, we need you.
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Chris Cosgrove 8 years, 7 months ago
Link | ReplyYour words are SO powerful, off the chart, Vic.
One little corner of the world thinks about you every day and wonders how the day is going. Is she awake, is she throwing up, has she taken that first tiny turn for the bettter? Are you somehow surviving the bone tired weariness? Zander? Declan? Brian? It's hard to know we can't help.
Love mixed w tears, C.
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