I cross the street, a bus roars past, and I enter the corner coffee shop. I’m here for something to calm my nerves. Alcohol? Not in years. Cigarette? Not in decades. Sugar? Not in months.
My coping mechanisms have been whittled down through the years, and while I’d like to claim it’s due to a superior will to live healthily, it’s more because my former coping mechanisms are rather obvious about how they are feeding what seeks to kill me.
Adahlia just started her first class at her new preschool. We love the one she went to last year, but this one might be our new one. I’m mostly leaving it up to her. If she likes it, we will stay. If she doesn’t, we will go back.
Why leave what we love and she is familiar with?
Well, primarily, its financial. We would free up something like $330 per month if we switch schools. That’s nothing to sneeze at. We aren’t in a position to ignore something like that.
Second, they don’t serve snack or food at this new school. And while our former school was vegan and organic — infinitely healthier than typical public school fare — this one requires us to bring our own snack. Adahlia won’t have to watch other kids ask for seconds of bread, rice, noodles, and fruit, while she can have none. She used to tell me about it daily. It made me sad.
Third, the new one is in the afternoons and only for only 2.5 hours per day. The other school is a 4.5 hour morning class. It’s just so long. And that’s the best time of day for her, for us to play together. I’m feeling greedy for her.
There’s so much about the other school we’d miss… The community, patents, kids, dancing, and music. I might see if we can drop in to do days here and there, and maybe pull her back out before lunch. I don’t know.
She’s such a strong little girl. So eager for new experiences. So ready to learn.
She’s getting a blood transfusion tomorrow. It’ll be our 356th. (Just kidding. I have no idea what number we are up to.) It feels like our 356th.
Adahlia has begun making antibodies to donated blood. I’ve checked her records, and the Antibody Screen which was being reported as Negative has not been uploaded to my/her patient portal since January. Last month, we were at the hospital until 7 pm, because it took them 4 hours to find safe blood for her, and they had to ship it over by courier from someplace else.
I am not happy about this. So I put “this” in a ball in my belly and simply don’t breathe down there. When I tell myself to breathe through it, I cry. It’s not something I can control. I am tired of so much crying. But of course I know that I cannot leave “this” in a ball of isolation in my gut.
Hence, the coping mechanism.
I am terrified for tomorrow. I don’t know why the nurses have not told me about her antibodies – why they just stopped reporting it – probably because they don’t want me to worry. I’m scared we are on a path where she will start rejecting more and more blood. I am wondering if there is anything I can do. Or I should do. Or if there’s something I don’t know about.
I don’t want to talk to the nurses tomorrow because honestly, there is NO GOOD news that will come out of their mouths.
And I’m so tired of crying.
I’m a nervous wreck about her transfusion. The stakes have been upped, just a little bit, like raising a high-jump bar. Her body is starting to recognize that something is “up” with this blood. It’s not hers.
“So make your own!!!” I want to scream.
We bought a fish tank. I just realized it is another coping mechanism. (I should have titled this post: coping mechanisms.)
It has two sunburst platys (one orangish and one lighter yellow), one red platy, one Dalmatian Mollie, and one aquatic frog. Their names are: Schleukie, Lahgie, Hattie, Woukie, and Froibles, respectively. Adahlia was instrumental in naming them.
I could stare at this tank for hours. When I am not working, I usually am. It’s right off the kitchen, so I see it easily. The cat joins me. Together, we watch the fish swim. We watch the frog float like an astronaut through space.
For many nights this past month, Adahlia and I have been sleeping in a tent in the backyard. It rarely rains, so we can see the sky though the mesh. We like it. It is fresh, freeing, and somehow feels right.
At her last Chinese herbal appointment, Adahlia told my mentor, “When I sleep outside I have good dreams. When I sleep in my house I have bad and sad dreams.” This surprised me. Yet, many times, as she lies asleep in my arms outside, she starts sleep-giggling.
At night, I wish Adahlia sweet dreams, and tell her that she is my shining star.
She replies: “You are my flying fish.”
And now I must go fetch her from her first day. Lov,e