We had a sweet Rosh Hashanah—a nice, bright celebration of the Jewish new year. We spent a little bit of time at our synagogue, and a lot of the day together outside eating in the sunshine with people we love. That’s one of my favorite ways to meet G-d. First, puppy dog tails (cinnamon rolls minus the roll), and then later, apples and honey and latkes, etc. at my parents house. Starting the year off right.
Now that it’s 5777, I want things to be different. Not really things. Just E.’s health. Other than that, I’m grateful as hell.
E. is starting to cuddle with her backpack. Yes, the little black 90’s style mini backpack that holds her feeding pump, ice pack and formula bag. There’s a tube that goes from her small intestine straight to that thing, so she’s tethered to it 24/7. Because she’s so tiny, she can’t yet wear it on her back—she would tip right over. So it sits right beside her, all the time.
It’s now been six months since she got on those tubes.
I have never been into the backpack. First of all, it is ugly. Sometimes, when we are out and about someone will say to me, “cute backpack”. Each time I wonder if they are being sarcastic, although it doesn’t seem like it. My best guess is that they just don’t know what to say with a kid with tubes hanging out of her, so they offer up a benign compliment.
But E. is becoming attached to it, much like A. became attached to his little grey mouse lovey for comfort and reassurance. She strokes the straps, or pats it gently. Tonight, right before bedtime, she advanced to hugging it. Tenderly. A big full on hug.
This is why E. is my heroine. I lament the whole reality of that backpack while she embraces it, literally. I hate seeing her have to be weighed down by it, tethered, unfree. I am stressed by constantly hovering around her to move it whenever she moves so that the tube doesn’t get dislodged.
I can’t get anything else done, and I mean anything. And Cedar and I live in near constant fear that it will get ripped out again at any moment, which would put us right back at the ER.
Yet E. accepts the backpack as an ally. At this point, she probably cannot remember a time that she was without it. Her attitude is stellar. She does not reminisce about what it was like beforehand.
Cedar and I took A. up for an overnight last weekend, just the three of us. We went to see Cedar play jazz in Eau Claire.
E. stayed back with Julie, a retired nurse who cares for her when I go to work. Julie is so skilled, so loving and so present with E. that I have actually had moments of reverse guilt about working, like I should maybe work more so that they can have a little extra time together. She is that good.
The three of us stayed at a new hotel there, which was mid-century modern meets the Midwest in all the best ways. The music was enthralling and went on and on, although I missed a lot of it. Much of the night I was upstairs trying to get A. to bed, and then once he finally relented, of course, I had to stay in there with him because I didn’t have a sitter. Looking back on it, we both should have just gone back to the party. That’s probably something I should do more often.
A. was an angel. He sat watching the load in and the show for almost three hours. I didn’t bring along one single toy or activity for him—not on purpose, I just forgot to bring anything but clean clothes and a stack of books (I actually did not bring him a toothbrush). Yet somehow, A. rose to it, and acted like a total mensch. He even leaned over the table to our lovely friends, locals, who hosted us earlier that day and offered (something like), “I forgot to thank you for having me over and sharing your toys.”
Yes. Just, yes.
I’m not sure if we slept at all, but still, the trip was a true vacation. There were no tubes, no medical appointments and no one threw up. We got to relax; it was like old times.
On the way back home, we stopped at a farm for a hayride and stared at the big cerulean sky. The land smelled so good, it reminded me of being alive. I got into that thing that I always get into whenever I’m moved by trees, rolling hills, or rows of collard greens. I think about moving to the country and staying there. I get all giddy about the possibilities.
It was so easy to be traveling with A. I could tell he was also giddy from all of the attention and the adventure and most especially, the lack of constant medical interventions that are required for E.’s basic survival.
When we were preparing to leave the hotel, A. laid down on the newly carpeted floor outside our room and told me that he never, ever wanted to leave. And then every few minutes, on the car ride home, he asked if we were still in Wisconsin. He didn’t want to cross back into Minnesota. For him, maybe, Wisconsin became a state of mind, a place of respite.
If I’m telling the whole truth then I will acknowledge that none of us wanted to come home. Of course, I didn’t say that to my child, but I’m saying it here. I love my daughter more than I could ever write about, but I don’t like how our daily life looks right now.
A few minutes after we walked in the door of our house, E.’s pump was malfunctioning and I was on the phone with the home care nurse, trouble shooting how to get her tubes running again. There was a lot of beeping from the pump, we were late to A.’s swim lesson and we had no food in the house except for a whole lot of whole wheat pasta in the pantry, because who wants to eat that anyway.
I’m trying to start a little firestorm of hope tonight inside of me. I want to believe that this new year will bring health for our E. And of course, more than ever, for our world too, because there’s a whole lot of healing that needs to be done.