We drove to the mall yesterday in order to get a break from the house. This is one of the things that we do in Minnesota during the cold months; we act as if our malls are actually free gyms. Cedar thinks it’s depressing and every time we do it he makes a two word vow: never again. I don’t mind. I like it. If I’m honest with you, I was partially raised at Ridgedale.
Our dear friend Marc met us there. We call him E.’s B.F.F., because the love between them is real. He paraded up and down the escalator with her as many times as she wanted (which may have been in the double digits), our daughter and her feeding tube tucked securely in his arms. Then he chased her around the toy store while she did a half jig to the soundtrack from Frozen. The tube started beeping, as it often does, but he was on it. All I can say is, thank G-d for Marc.
E. was supposed to have surgery—a second botox injection in her pyloric valve, in order to curb her vomiting—but she has another rugged cold. We’re stuck in this on and on again cycle, and it’s only November.
There’s the usual sounds around here like crying in the night and of course, the puking. And then the dreaded hiss of the nebulizer, which helps to open up Eden’s airways. I took a picture for Instagram of the process this morning and then I didn’t post it. I want to be real about our life, but who wants to see a photo of a toddler with a medical device, wailing?
When I hold the mask over her face, E. takes my hand into her warm, tiny grip. Then she leans into me, heavier and heavier until she is half-slumped into my chest, as if she is very tired. Because she is. And so am I.
You know who is probably the most tired: Cedar. Because he keeps the baby monitor on his side of the bed almost every night. If that isn’t love then I don’t know what is.
I went to get an annual exam earlier this week, and as it turns out, you’re supposed to do that every year. I have been avoiding my own medical appointments because I feel as if I’ve met my limit for the decade. But I know that this type of avoidance—as they say in my son’s classroom—is a red choice. (Sometimes, when we are talking as a family, I accidentally say red light choice and Cedar and I laugh, because no, that’s really something else.)
The nurse inquired about my children, so I told her a bit about E.’s health challenges. She shared that her own son, now in his 30’s, was born with Dyspraxia. She looked me in the eye and said, ever so softly, “It’s hard, isn’t it?”
While she gently tightened the faded blood pressure cuff, I tried to rub my wet cheeks dry with the sleeve of my sweater.
The nurse told me that her son is now working, something the doctors once doubted he would ever be able to do. She also described him as a proud, doting dad. And then she talked to me about Jesus, recommending a prayer book that she studies each morning, called something along the lines of He Has Risen. That part, for me, as a Jew, is not a great fit. I didn’t mind. I loved her for offering up her story, for being upfront about the struggle. And for caring about us, even if only for that moment.
I’m used to the Christian-centered thinking. The phrase happy holidays has not fully taken off here. And at my son’s school, I’m pretty sure they believe that Christmas trees are secular. Although for roughly three months of the year it seems as if we are strangers in Santa’s wonderland, it could be way worse.
My people have lived through that, too.
Even though I don’t rely on Jesus, there are other things that help me during these times. It’s a tough world, so feel free to draw from my list. Or fall asleep during it, or do whatever you need to do. I’m here, and I’m very much rooting for all of us. And I won’t try to convert you, ever, to anything at all.
• Writing it down. Over butter chicken and enough rice to feed us and possibly ten other people, my dear friend Jeannie asked me about my supports. My answer flew out: writing. It makes me feel less alone like almost nothing else.
• Visiting bakeries that smell like warm butter. I get a cinnamon roll with my son A. and pretend, temporarily, that I am also five. If it’s an option, he gets the chocolate babka. We eat our pastries together like animals, getting powdered sugar/chocolate/frosting all over our faces. It is a flash of bliss, Pre-K style.
• Walks. The longer the better, but even five minutes will do. As winter descends here, it’s best to wear as many layers as humanly possible. So many that whenever I’m outside, it’s pretty much a winter witness protection program. No one can even recognize me, and that’s just fine.
• Being outside, in any way possible. See anything I’ve ever written for more than one hundred reasons why I feel this way. Yes, I sometimes visit the mall, too. It’s not mutually exclusive.
• A hot neck wrap. I’ve been into this for quite a while. Do you have one of these? If not, go immediately to find one that is filled with rice or lavender or both. Microwave it and lay it on your body. Repeat.
• Smelling things. Do you ever go somewhere for the sole sake of smelling things? Like a boutique gift store or a food coop? I just go around smelling the oils/candles/lotions that are made for relaxation. I usually stay until the shopkeeper starts wondering if I am up to no good because it’s been so long and I’m still smelling. Then I thank them very much and I leave. Occasionally I buy something, but that part is highly optional.
• Calling congresspeople. There’s a lot to talk about with them right now. While not soothing per se, doing something feels way better than not.
• Calling my mom. I know how lucky I am to be able to do this. For many people, for many reasons, it’s not an option. And I probably can’t give you her phone number (even though I kind of want to) because I know that I have more than enough tsuris for her to handle. But maybe, if you’re able to, call your mom and if not, call someone who you really like. Even though, I know, it’s hard to reach out.
• Listening to something amazing. The good news is there’s lots to choose from. Put on the second track, Glorious, off Macklemore’s newest album and tell me that you don’t feel even a little bit better. I mean, music in general. Whaaat? How did it get to be so incredible in the first place?
• Doing stuff for other people. It helps, a lot. For me, probably the most.