June 25, 2016, 12:20 a.m.
In the past month, we've enjoyed a visit from our good friend Kathryn, who just finished her first year of graduate school in Iowa. The kids love her, and she plays with them better than almost anyone we know.
We also spent time at the beach in Santa Cruz with our friends Heather and Tom, who were visiting California from Colorado. In fact, we spent our first night away from home (or hospital) since May 2015. We brought our paper towels and our Clorox wipes, and we overpaid for a room in a newly built Fairfield Inn and Suites. Sure, Aila's immunocompromised, but these actions were to calm her parents. Because if we've learned anything in the last ten months, it's that we are decidedly not in the driver's seat when it comes to fevers and hospital stays and certainly cancer. We had one fever scare, which followed a well-intended but ill-fated trip to the indoor playground at McDonald's with Wampa (I can still see the panic in our faces as my father told us about that "outing.") But by some very unusual luck, that fever never climbed much past 100 before declining and we were spared our 89th trek to the ER. Okay, that's a slight exaggeration...but only slight.
In the last fortnight, the kids had to bid farewell to their beloved nanny, Viviana. She worked almost until her due date, but she is now off to have her third baby. The kids understand that "Vanna" is with her baby, but they hate the new nanny we chose all the same. And after two weeks, I think that Brian and I kind of do also. We were expecting some hiccups and growing pains, of course. But after listening to them cry, scream hysterically, cling to me all morning, and refuse to make eye contact with her for ten separate days, I think I'm ready to pull the plug. Zander, who routinely flirts with the cashiers at Whole Foods and screams with glee whenever anyone (mailman, UPS, guy selling subscriptions for magazines that may or may not ever arrive) comes to our front door, who calls virtual strangers at the park or the beach "my friend," said yesterday, "Mama, Mommy, I don't like Stefnee. I want a new nanny." Also, Brian was invited to be a speaker at a tech conference, which is amazing and wonderful for his career. But it will be the first time since her diagnosis that either of us left the other at home with Zander, Declan, Aila, and cancer. He leaves Sunday, which will be the 4th of 6 days of her dexamethasone. And Days 6-9, when we yank the juice away from our tiny addict, are always the most painful. Not that things are going sweetly and calmly tonight on day 3, since my baby daughter is moaning and groaning behind me on the bed as I write. Her leg hurts, so we gave her oxy. She's tired, but can't sleep, so we gave her benadryl. She's crazy and loud, so I have my headphones on. Saying that she loves Zander and Mom. That she's scared of Declan and doesn't love him. Crying when we tried to move her cup of crackers from her hand, huge elephant tears dripping down her cheeks. Chaotic, because this is not what other kids her age are doing at almost midnight in their fourth year on the earth. Monotonous, because we know the rhythm and routine all too well.
My heart aches. But it's the worry that sometimes debiltates me. So just what does a cancer parent of three tiny people under age 5 worry about?
- Relapse;
- Fever;
- ER visits and unpredictable hospital stays;
- New nannies who pick our 4-year-old up from a 6-hour sports camp and decide to take him to a water park, informing me of this by texting me a photo of the kids (who don't know how to swim) in a giant pool;
- The number of different toxic chemicals that are in my daughter's body on a given night--steroids, chemotherapy, antipsychotic, antihistamines, benzodiazepine--and their eventual effect on her growing body;
- The fact that our one-year-old cannot really see because of his insanely long hair, which I still refuse to cut because of its silkiness and beauty;
- How we're going to fire the current nanny without hurting her feelings ("So, my kids hate you, as it turns out."), find a new nanny quickly and before the current one catches on to our distaste, and whether all of this will somehow happen in a way that allows us to continue working with any consistency;
- That I'm being wildly taken advantage of at work (Mom);
- That I'll wear the wrong thing when speaking at the conference (Dad);
- New fever during the upcoming three nights that Dad is away;
- Stress-induced acne and dermatitis (new onset, mind you, at the age of 39; Mom);
- Our beautiful 4-year-old, who seems increasingly stressed with this new nanny, who has been packing shopping bags with his toys and insisting upon bringing them wherever he goes, including his bed when it's time to go to sleep;
- That Aila is missing out on her childhood;
- That we are missing out on everyone's childhood.
- Relapse.
Right this very moment, I'm going to choose to think of Aila at the beach, last weekend and pre-steroids this go-around. Climbing, with her uneven, unsteady movements, to the top of a sand pile that Zander and his friends built, right next to the waxing and waning tide. Running gleefully toward the water, only to turn and speed-gallop with joy back toward the tall pile, which provided safe and high ground, as the incoming wave rolled toward her. Giggling, feeling like a victor who was beating the odds.
I love you, Aila Muriel.
Comments
Derek Monahan 8 years, 5 months ago
If circumstances were only slightly different here we would move out there so I could apply for the nanny position. Love you guys.
Link | Replyvk 8 years, 5 months ago
Aila at the galloping at the beach is a lovely mental image. New bummer nanny, steroids et al., not a lovely mental image. Good luck finding a new nanny for your wonderful brood. Hugs to you all. And congrats to Brian!
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