I was pretty down in the dumps this week, wallowing deep in the “my kid has cancer” ditch that constantly threatens me, as we chug along. There is one pretty simple solution that helps me to avoid this pothole. It’s so simple, it’s laughable:
Steal some hours for myself!
Elsa? I’m sorry. Perhaps you will read this one day, as a teenager, and feel angry and hurt that I needed time away from you in your hour of need. And perhaps, you will read this as an adult, a mother of a two-year-old yourself, and say, “Of course my mom needed some time away! Bless her little heart for all she did!” (I don’t know why, in my daydream, you talk like a southern belle).
Last Thursday, at clinic, I had to sign another one of the hundred forms I have signed for you. Yes, I give permission for you to cut open my child’s body and Yes, I understand she could die. Yes, I give permission for you to put a needle in my child’s spine and Yes, I understand she could die. Yes, I give permission for you to fill her up with poisons, in some paradoxical effort to fix her and Yes, I understand she could die. Each time, I sign these forms and indicate that I am signing on behalf of another. I am the Mother. The Guardian. The Decision-Maker. The Permission-Granter. I am the one that understands you could die and signs at the ‘x’ anyway.
This past Thursday, signing another form, the word “Mother” struck me as ridiculous. Rolling “Mother” around in my mouth, I repeated the word. I even said so to Jessie, the Nurse Tech, who brought the form, “Gosh. That’s funny. I’m her mother . . . her mother. I’m still 16 years old inside. Ya know? How could I be someone’s mother?” Jessie smiled, nodded and left the room – a skill I am sure you must perfect in order to work in pediatric oncology.
I spend 24 hours a day with my sick child right now. Now that she has stopped sleeping, unless she is snuggled up against my body (and at least we have found a solution!), I really do spend 24 hours a day with her. Before all of this, I could put her in her bed at 8pm and, though it was only a few hours, I would savor every moment I had while unplugged from her little body. I could go to work and get lost in my patients’ stories, their sickness . . . sickness that, for me, really just meant a series of tasks and a smile. A hand held and then I could send them on their way. I was even thinking of daycare a couple of times per week so that I could plot my next move. Grad school? More shifts at work? I had finally dug out some spaces in my life to just be Georgia, in addition to being a mom.
I have a newborn again, except she is huge and has infinitely more demands than just “Hold me. Feed me. Change me.” And it feels unnatural, because she is not a newborn. She should be out playing with other kids, learning, running, growing. We are stuck in stasis now and, after days and days of NEVER leaving Elsa’s side, inevitably, I find myself deep down in that hole again, convinced I will never, ever, feel happy.
I am a selfish 16 year old somewhere inside. That 16 year old has a hard time wrapping her head around the fact that I have a child with cancer. I want to sit on the couch with my coffee, in peace, and write in my blog. I want to go hiking in Yellowstone. I want to go to work and know that my patients go home and say, “I had this great nurse today.” I want to study for my lactation consultant exam. I want to go back to school.
You know, I’m not really sure where I’m going with all this. And my time here is limited. Gone are the days when I could mull over a post for hours and ensure it made sense with a beginning, middle, and end. These are stream of consciousness days – That’s all I have time for.
J has taken Elsa to clinic – which is a really big deal for me. I’ve relinquished just a little control. I have had to swallow the fact that, Yes, she could die at clinic. I have signed those papers and YES, I understand. But today is a low-risk, “easy” sort of day. Just two different chemos and *hopefully* just a few hours. Plus, he’s not just some stranger off the street – as he said last night, “Georgia. I’m her father.” I know it is OK for me to take some time out for myself. Not just OK, but 110% necessary for the survival of our family. We can’t afford for me to implode. Each hour that I have to myself, I climb higher out of my dark hole. I can see sunlight again!
I’m honored that I get to see Elsa through this and the love that she showers down upon me is stunning. She showers me with a hell of a lot of other, less pleasant nonsense, but I am always shocked that the act of loving her and being loved by her is *enough.* Enough to make parenting worth it. I am also realizing that, I must take time out for myself. Cancer or not. I have to find a way to ask for help and not feel like a failure. I am such a better mother when I have time to NOT be a mother.
Done with 7 days of steroids! Just 7 more weeks of Delayed Intensification. Hurray!
Sweetness on a swing.