Updated: Nov 5, 2018
To The Brim
This expression keeps coming to mind in a million different ways.
I feel tothebrim with love and support from so, so many family and friends from all over the country and the world. It’s absolutely incredible. In fact, it is sometimes totally overwhelming. Please know I read every message. I feel so buried in everything right now that I don’t respond to many. You know TFW there’s so much on the to-do list that you can’t really pick anything to start with? That’s kind of how I feel. I know we couldn’t get through all of this without all of you. There are 8 months ahead of us and the sheer number of you warms and cheers me!
Thea’s digestive tract is TOTHEBRIM. Oh my goodness. She eats and she eats and she eats some more. As I write this it’s 10:45 AM and she’s had three adult-sized meals already. Everything she wants is salt salt salt. She has no desire for anything remotely sweet. We now have a gigantic tub (the kind you put beer and soda in at a party) on our kitchen counter full of the kind of salty snacks that SF parents shun - ruffles, pringles, doritos, oh my. She constantly narrates what her next meal shall be and plans each one meticulously, down to who should prepare each item. She is also equally obsessed with “FRESH COLD” water. I decided everything is tothebrim yesterday while I was being sternly directed to pour her more (to the brim). This is why you may have noticed a bunch of insulated items appear on the wishlist so that things stay cold for her. Sometimes I feel like I am nursing the Princess and the Pea. Suddenly she is quite particular about everything.
Thea’s tiny body is also tothebrim with steroids. Obviously this is what’s driving her hunger, but it’s also driving her mood swings. The Decamonster appears on and off throughout the day, with varying degrees of intensity. You kind of have to see it to understand. Anyone or anything might be the subject so things stay exciting around here throughout the day. This has presented new challenges with Siggy. Not only is Sigs starting to try out those lovely behaviors for herself (sigh), but it’s hard for her when Thea screams at her or hurts her in a rage. We’re working to help her understand that the medicine does this, but it’s tough when you’re three. We are grateful daily for her bubbly, joyful, spunky personality. She shakes things off pretty quickly.
Speaking of this, I am tothebrim with heart-melting love for my girls. I have never been so happy to have two children. Nothing distracts Thea from pain and hunger like a good play session with Siggy. It’s so wonderful to be home now and I don’t think I’ll ever get enough of watching them play, talk in their secret language, and act out all the dramas they are going through. Siggy talks a lot about leukemia, germs and sickness and I’m pretty sure this is making it easier for Thea to talk about it. Thea’s been pretty quiet about the whole thing.
As I look around my house, pretty much everything is tothebrim. The laundry, the constant sanitizing, the refrigerator, the art and play activities that keep Thea both occupied and stuck inside all day….. It’s all spilling over everywhere. Those who’ve visited know I am obsessed with storage solutions in this ridiculous impractical-for-families loft, but all of my systems are being tested now! I’m trying to care more about germs and less about clutter. I’m trying to let go of my control-freak ways.
Tothebrim actually spills over at bedtime. Once the girls are asleep, I tend to collapse on our bed and not want to move. Staying upbeat and strong for Thea about her illness, calm all day long through the insane rages and never-ending demands for food, constantly running around doing, doing, doing...I feel utterly depleted at dusk. I am so happy to have some talk time with Jeff before bed to process everything and let it out. Still, depletion is going to be a major theme of these eight months and that fact alone feels depleting too! Jeff and I are both working to build more self-care stuff into our days. Just like when you have a newborn, it’s going to take awhile to strike a balance.
As much as I’ve written about rages and challenges, Thea is still tothebrim with sweetness, thought and care. Last night we had a little scare when we saw blood coming from the bandage over her mediport*. We had to change the bandage. In her mind that is the worst thing that could possibly be done to her body (much worse than needles). During the change she said “I don’t want to be sick anymore. I just want to go back to when I was born a baby. I want to be like Siggy.” We told her it’s okay to have those feelings and that she is so strong and so brave. The very next morning she snuck into Siggy’s room and left her a “present” (gathering bits and pieces of presents she’s received into a gift bag). Then she told Siggy, “I know it’s hard for you that I get a lot of presents because I’m sick, so I made you a special present and hid it in your room.” Throughout the day, she pulls me over and just when I’m wondering what the next demand is, she’ll put her hands on my cheeks and say, “Thank you mommy. You’re doing a really good job taking care of me.” These little moments leave me speechless. Underneath all the meds, she is still our sweet little Thea - thoughtful, noticing, plotting happy surprises.
* Hi. Jeff here. It’s usually my fault when you see a science interlude casually tossed in. Beck mentioned blood coming from her port. This is a big deal because bleeding could be a life threatening risk while she’s unable to make platelets. But wait - what’s a port? A port is a medical appliance surgically implanted in her upper chest, just under her left collar bone. It looks like a thick button under her skin. With pre-application of a numbing cream, a port is an easier way to get weekly access to her veins than using her arms. They can draw blood for labs and administer her IV chemo. The tube inside ends right above her heart.
Thea hasn’t done much more than glare when I say, “so cool dude - you’re part robot now” but I’m preeeety sure it’s my duty as a dad to repeat this until it’s funny. “Oh, you want to play with my phone? Look, it has a port too.” Today when reading a book about leukemia at bedtime, I thought it was a positive sign when Thea paused us on the page about ports and insisted on showing Siggy hers.