Summer. A time for siblings to remember how much they dislike living in the same house for an extended period of time.
Little Brother tries to bike in cowboy boots. The heat index is around 100. He screams at Husband, which I hear through the window.
Sister wears the same summer dress every day this week.
I worked a little this week and am transitioning some clients off to new sub-contractors, all because I can't know how the rest of the summer will be.
Summer. "Airplane arms!" I instruct. Sister shoots her arms to the side and squeezes her eyes shut. She lifts her chin to the sunshine. I spray sunscreen all over the horseshoe-shaped scar; sunshine can make it discolor. And sunshine can burn Sister more, now that she is on the new drug.
But we need the sunshine. We need the heat. We need the water gun fights with the neighbors this one final summer before they move away. We need the drenched Sister and we need Little Brother in his cowboy boots tripping off after the big kids, soaked as they are. We need late nights and bubble baths. We need the shaved ice from the shaved ice machine gifted to us by my very good friends. Blue bowls turn pink when the ice sprinkles into them. "I want pinacalado," Sister mispronounces. "I want cherry," Little Brother says. Big Brother declines. He always declines.
Little Brother builds forts now. He dismantles every couch and chair in the house and assembles himself his "base." He pulls blankets and sheets from around the house and demands that I cover his construction with them. He snuggles inside for a few minutes, but only until he decides he has a better idea and re-constructs the whole thing -- this time incorporating Squishmallows and giant plastic Bat Man toys. He encircles his base with little green army men that my mother sent him as a present. Sometimes, he carries them around the house in discarded shoeboxes.
Or, Little Brother chooses a box from one of the many Nerf gun armaments that Big Brother has ordered, and then Big Brother decides that not only is the Nerf toy itself his, but also the empty box. And then they fight. And then Little Brother cries. And then Sister intervenes, trying to make peace. And then Brothers get louder. And then Little Brother screams. Big Brother hugs the box and Husband tells him to take it to his room. He does, and Little Brother throws himself on the floor. Tears fly and he kicks and kicks his little feet. Sometimes, he destroys his fort out of anger. Sometimes, he throws shoes. Sometimes, the only way to de-escalate is to put him in the bathtub with his designated bathtub army guys. Other times, nothing works and time marches on.
Oh, summer. You should have been all scheduled and orderly by mid-February. But I couldn't, this year. I knew we'd be in and out of doctors' offices and labs this summer. I couldn't predict much, really, for Sister.
But the other ones. At 11 and five years old, they clearly can't -- nor can we -- stay in the same house together for much longer than it takes to sleep at night. Cello lessons continue, piano lessons continue, and therapy does, too. But otherwise, we are off-roading this one. Sister has an oncology appointment and a blood draw on Monday. Will she need additional supplementation to raise her phosphorus? I don't know. Will her liver enzymes be elevated? I don't know. What about her blood pressure? Is that okay? Probably? I don't know. I'm waiting for our at-home blood pressure cuff to arrive.
She still turns into an animal and hisses at me whenever we bring up blood draws or doctors' appointments. She assumes all fours and backs into a corner.
What if we can't get her to do the blood draw on Monday? The back-up plan is to have it done under nitrous later in the week, but we will be traveling soon for care at a hospital that does not offer nitrous sedation for her upcoming injections, let alone blood draws. I coax her with a plan to get ice cream with her best friend. She smiles at that idea, at least.
Lately, our summer nights are mixtures of drone flights and water gun fights and bubble baths and lots and lots of talking and planning and imagining and fantasizing and questioning. Big Brother plans future Nerf gun battles with friends, providing me Notes full of instructions and directives and friends to invite to certain places and very specific times. He talks of this throughout his shower, at high volume, and while following me, dripping wet, through the house. He pulls his wet hair over his wet eyes. He finally climbs the ladder to his loft bed, his speech elevating with every step, and the only way I find to stop it is to interrupt him and say "Good night" while closing his bedroom door.
And now Sister, already nestled in her loft bed with her many Squishmallows, already reading or writing or drawing, asks, "When can I see my friend again?" and "How many kids have my kind of cancer? Will you ask my doctor?" and "What happens if I don't take my levothyroxine? Will I die?" and, a new one, "Which would you rather, Mom. That I never existed, so you didn't have a kid with cancer, or that I did exist, like I do now, but you have a kid with cancer?" I step into her dark room. I see her white eyes staring.
"Girl, my life is so much better with you in it. Now go to sleep."
She accepts this, at least I hope, and she is quiet. I pull the door shut.
Our summer.
Oh, my god. That last bit is a heartbreaker. Oh, Alice! What a mighty girl. And a lucky one to have such a mighty mom
Thank you for this lovely glimpse inside your family.