With the post-election intensity, Trump’s stunningly scary staff picks and all the hate going around, it’s easy to get demoralized.
But we’ve got to keep our heads up, because sometimes things get better. We have to do everything that we can to make them so.
E. is just now over the intense month-long cough she was struggling with so much. Unfortunately, A. and I still have it. We’ve tried everything to kick it, but we’re just hacking away in stereo. A., because of his asthma, is on more stimulants than is legal for any sport. And A. plus prednisone equals—behaviorally speaking—basically, a wild pony.
It has been, in one word: relentless. In five: parkour in the living room.
There’s been some good moments despite the drugs. We went to the grocery store tonight, along with everyone else from our entire neighborhood. A. unloaded our basket at the checkout, we sang along to “Comeback” by Francis and the Lights on the way home. If you can, listen to that song, and imagine a 4-year-old belting out the chorus. It’s pure magic when he does it, he’s like a tiny teenager.
E. finally had that tube change. The theory is that the old tube’s balloon was blocking her stomach and causing the vomiting/retching/gaging. The hope is that with this new balloon free G tube she will be able to have formula in her stomach, and eventually, someday, real food.
The outpatient procedure was done yesterday morning at the hospital, mostly because that’s where her gastroenterologist was working. It was a simple switch, no sedation necessary. E. seemed only briefly uncomfortable, with just a little bit of crying. There have been times where getting her into her high chair during dinner has been more difficult.
My mother was there with me, who is a lovely person to have around when something may or may not go well. She is calm and kind and highly committed to making any moment educational for E.; she always brings a selection of developmentally appropriate activities with her in a big canvas bag. Plus her purse is filled with, always, several mini packs of tissues, notecards and a pen, and at least three tubes of lipstick.
I’d like to be a little more like her, in terms of personal hygiene and overall commitment to wearing makeup.
Overall, it’s been going well. Yes, last night, as the afternoon darkened into evening, E. started up with the vomiting. The problem is not that vomit is gross, because really, who cares about that. The problem is that she needs those calories.
But two pukes does not make for a bad beginning. In our current life moment, it doesn’t even make for a bad day.
And today E. was joyful and well and only spit up a little bit in the morning, which is what lots of babies do. Healthy ones.
Still, the tube may or may not work out. It’s too soon to call it a total success, although it seems promising. I’ll keep you posted. And in the meantime, we wait and see.
For these reasons and more, we are packing up to go live with my parents while Cedar is back on tour. Yep. I’m 37 years old, and I will be sharing a kitchen (and family room and the basement) with my mom and dad. Am I grateful? Heck yeah. I’m more than glad that my parents are both vital and generous enough to host us. Am I embarrassed? Only very slightly.
Cedar’s leaving next week, so that’s when we decamp to the suburbs. Where I will be sleeping in my childhood bedroom. It’s like when I used to sleep in there alone (with my 25 closest stuffed animals), all through my childhood, except now it will be me and my baby girl.
Sleeping with little E. is not my favorite thing, because with the tubes we can’t snuggle in the night. She has to stay in the sling in her crib with the IV pole and the gastric bag, the whole set up. Also, she’s the lightest sleeper I’ve ever met. Breathe heavy and the kid is clapping her hands and wanting to play peekaboo. Or, alternately, fussing. When she fusses it usually means one thing: she wants to pull on my hair, her favorite way of self-soothing. Nothing says four thirty am like having your bangs yanked.
But it’s Thanksgiving this week, and I’m trying to live with as much gratitude and also, irreverence, as I can muster in these uncertain times. I’m grateful to have a daughter, especially this one, who just said “clock”, clear as anything, for the first time today and then beamed like she’d discovered cotton candy. Who is now in the 3rd percentile for growth (watch out world) and is kneeling and singing and flirting like mad at the bakery.
And most of all, I’m grateful for the people around us who have helped us make it to yet another holiday. If all goes well over the next 24 hours, we will be having our turkey outside of the hospital walls. For that, I’ll be thanking anyone who will listen.