March 12, 2017, 10:19 a.m.
When we started this odyssey way back when, we were told--and understood--that there would be some very hard days, some very hard times. Of course, the beginning was excruciating. As a parent, wrapping your head around the idea that your kid has a life-threatening illness that no one really understands is probably as hard as it gets. But in hindsight, that part seems tolerable, even preferable. We were in shock, so adrenaline was carrying us through each day. The world around us understood that regular life was on hold, second or third in line to everything to do with cancer, Aila, and surviving. Well wishes were arriving from near and far on a daily basis, and it was easier to tolerate accepting help in part because people in every direction seemed to be insisting on delivering it. I could write these blog posts and, without realizing it, easily sound hopeful, spirited, positive, even a bit romantic, with my imploring and goading of Aila to "fight." I laugh a little bit at that mother now.
What we didn't understand early on was that the really hard days would come much, much later.
It's been nineteen months since her diagnosis. Nineteen months later, she's still very sick and extremely immunocompromised. This past Tuesday, she threw up all day long. I stayed home from work to care for her, and by Wednesday she seemed to feel better and was even willing to venture to the park. Her nose began to run on Thursday, and she woke up screaming on Thursday night about an hour after she went to bed. She joined us in our bed--in her "sick spot"--so we could keep a close eye. We both could hear her signature moan as we sat on either side of her, trying to work and "relax" in preparation for the final workday of the week. The moan that means, "hey, Mom and Dad, I have a fever. hey, Mom and Dad, I'm trying so hard to launch some kind of immune response, but I'm thinking it might be in vain? hey, Mom and Dad, pack our bags for the hospital, okay? Can you bring my princess socks?" Her temperature was almost 101 right before Brian closed his eyes. I stirred awake sometime around 5am, and her hand was almost too hot to touch, her breathing quick and labored. We drove up to UCSF in mid-morning, spent the usual four or five hours in the ER, learned she was neutropenic (again), and prepared for admission. Room 14 this time, far from the family lounge with the refrigerator and the kitchen, with a crookedly mounted television. With a view of the Bay rather than the courtyard, which is somehow much worse. A constant reminder of the world that is carrying on without us, while we sit and wait and watch endless hours of CNN and Frozen and worry about whether or not this latest precipitous drop in blood counts could be a relapse.
I wrote a post about three weeks ago that I've been irrationally afraid to make public but will alongside this one. It's not the post (as I realize I don't have a Trump-size following) as much as saying out loud our truth, which is that I'm pregnant. Close to 35 weeks pregnant at this point, which of course is currently contributing to confusing feelings of hopelessness and despair, relentless questions about our ability to really manage all of this, whether we have foolishly let our dreams obscure the reality of our lives, which today feels once again like hospitals and leukemia...with a big picture window view of other people going about their Sunday business, living their own lives and moving on.
I stayed here with her for the last two nights, as it seemed easier for the weekend, when we don't have any help, to manage the delimited variables in a hospital room with a sick kid at nearly 9 months pregnant than it did a household and two little boys. Brian and the boys came up yesterday evening to bring us rations and for a visit, and I basically picked a fight with him about how we would possibly make it through this upcoming week. As though somehow any of this was his fault. Even when I think about it now--a day later--I don't really understand why I did it. I feel ashamed.
Asking for help is very hard. Asking for help for nineteen straight months is even harder, and I admit to maybe having given up trying to figure out how to do it. It's often not even clear what kind of help we need. Practical help? emotional support? someone to read us Shel Silverstein poems about hope? I don't even know anymore. Our immediate families have...well...resumed the relationships they had with us before Aila's diagnosis, which were very distant at best. The confusing part about all of this is that what we kind of need is a family, like the kind depicted on Parenthood, but of course there's no way to ask anyone for that. "Thanks for the lasagna. Would you like to consider staying around and taking on the role of the mother-in-law about whom I fantasize? You know, the one who 'gets it,' changes Declan when Aila is throwing up, laughs with us while we make cancer jokes, and cries when she senses our despair? A long-term position is open, and we are looking to fill it."
We have carried on, insisting that leukemia not make at least a majority of decisions for us about school or work or pregnancy. And while I'm proud of us, I'm not sure it has been the "right" way to do it. We've been so busy pressing onward that we haven't spent even a moment thinking about what it's going to be like to heal. What we're going to do with the horror in our past, the fear in our future. With the weariness.
Comments
Becky Chase 7 years, 8 months ago
The agony of the long distance runner. Sometimes it feels like you are running on empty. While other lives may not look as dramatic, they run out of resourcefulness ,too. When the plate is crowded the challenge is how to make It more manageable. Sometimes something has to be removed from the plate.
Link | ReplyI know you miss the idea of your mother. She did have a lioness fighting spirit and looked forward to grandchildren even when you were a kid. As soon as you grew out of your Fisher Price toys she put them in the attic for the grandkids.
It is a sobering thought that everyone is doing the best they can with the life in front of them at any time. It is a universal longing to make it better.
I look forward to reading about the baby on her way...maybe a Wendy?
I think of you often and you are in my heart always. 😊
Angela Tana 7 years, 8 months ago
Vicky
Link | ReplyTo say your plate is full is an extreme understatement. I have no answers or words of wisdom for you. I guess I would start with a live in nanny. Do you have room in your backyard for a guesthouse? You know my mom is still alive but she's completely unhelpful so I rely exclusively on babysitters.
Many of my friends of 4+ kids say it's actually easier than 3 kids. So I hope in your situation that is true as well. I hope Ailia does great from here on out. Maybe with this positive energy of a new baby it will help Ailia heal. She can focus on her little sister verses all the fever/cancer talk. Wishing you an easy delivery and a super healthy/easy baby girl that will fill your house with laughter!
Heidi Tanguay 7 years, 7 months ago
I don't know if you remember me from school but Ive been following your blog. I can't pretend to imagine what you and your family are going through. You are the strongest woman I know. You are doing everything in your power to be there for Aila and at the same time you are being positive for the boys. Having a new addition to the family on the way..and still trying to stay as positive as you are and pushing through being the good mother that you are has got to take more strength than I could only imagine. Its so great that you and your husband work together to get through every day. There are so many people who support you and want to help you. Im still in CT so I can't bring dinners over for you guys...which I would love to do...but if you ever need an ear...someone to talk to...or someone who will listen, im here..I wish there was something more i could do to help you out. But if you get a chance to email me please don't hesitate...sometimes it helps just to have someone to talk to....God bless you and your beautiful family..
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