While my mom is passed out on the couch (must be all the clorox spray she’s inhaling), I thought I’d scoot out of the pak-n-play and get on this blog once and for all. For those who don’t know me, I’m Haley, and this is my story. I’m living here in this fabulous flat on the Upper West Side. It’s the perfect size for us (besides, if it were any bigger, my mom would live a sleepless existence cleaning and sanitizing, which, don’t get me wrong, I really appreciate). And we live right across the street from Central Park. Man, I really missed the wind! How crazy is that thought, to miss the wind. But, after two months in a room where you couldn’t crack open a window, it’s really such a pleasure.
My mom, by the way, got it wrong. Tomorrow is the transfusion. That means that today I spent my time oscillating between intense excitement over my gumball machine toy and extreme exhaustion. It was only 10 a.m., and I had only been up for two hours, but I just coudn’t keep my eyes open. My mom seemed really upset because I wouldn’t eat her strange concoction of vanilla yoghurt and squash. I mean, please. She’s trying to get me eat and she thinks that’s enticing? But I souldn’t complain; at least it’s not one of the nasty medicines that tastes so bitter despite all the cherry syrup used to drown out the true flavor. As soon as I see that red syringe coming, I clamp my mouth down and lock up my lips. Sometimes though, the resolve on my mom’s face is so intense, I give a little and just let it pass as quickly as possible. Otherwise, if I think she will give in, I vomit. Gets her everytime.
I got this disc put inside me. It’s for better access to my veins and blood. It feels weird, and a bit heavy in my chest, but at least those lines aren’t pulling out my catheter anymore. That was really so painful, I mean the stitches were ripping out everytime I tried to crawl. So I stopped crawling. Of course, now I got people trying to prop me up and push me along and give me “tummy time,” which isn’t so bad though I have to say it’s not always the most comfortable position being that I’m always so nauseous from the medications.
Tomorrow I go to clinic and get some blood. That’s going to be a real energy booster. Oooh! I hope those fun ladies that dance come. They’re quite entertaining. I just move a bit to see their reaction. Hey, I’ll take any laugh I can get. And boy do I laugh when they’re around. Clinic days haven’t been bad, except now. With this disc. They have to use this needle. This needle that they stick in my chest to access the mediport… good lord it’s ginormous!
Someday, I’ll look back on this whole experience and laugh. Aah, who am I kidding? I’m not going to remember this at all. But I’ll still be laughing.
Oh, please don’t tell my mom I can type. She’ll start wanting me to these every night.
Aunt Bea and Auntie Lori came to visit me.
There was a funny moment of the day. um. There was this breeze, you see. And I could not stop laughing. I guess you had to be there.
