I am in Target staring at a vast array of baby food pouches through my fogged glasses due to the mask covering my mouth and nose. My eyes scan horizontally and see there are pouches for baby-babies on the right and for “tots and tykes” on the left. I am breathing through my mask and the heat of my breath warms up the glasses over and over, so it’s taking a while to find the right kind of pouches I need to purchase.
I am there looking for pouches with “p” fruits in them (pears, peaches, prunes, pineapples, and plums) AND ones that don’t have apples and bananas (core ingredients for most of these concoctions). I am not limited by the numbers “1” for baby-babies and “4” for toddlers; I just want the right combo of ingredients. This means I move my eyes back and forth across the shelf, squatting down to see options at the bottom and standing on my tippy toes for the pouches that are on the top shelf and almost out of reach.
A big rolling container with huge boxes of baby food is placed to the side. It clearly is meant to be “out of the way,” but it actually is in the way. A young woman is unboxing the pouches with her box cutter. She looks over to me and I think I see her eyes crinkle behind her mask, indicating a smile… and also that she is about to talk to me.
She has watched me for 3 or 4 minutes as I grab pouches, flip them over, and throw them in my cart or return them to the shelf.
She says, “Let me know if you need help finding anything,” and I say, “I think I’m okay right now.” In another 30 seconds or so, she begins to tell me about the brand she is unpacking and how she thinks some of the food combos seem pretty gross — spinach and kale and pears being one she just can’t wrap her head around. I think it sounds like the makings of a pretty good salad if you just throw in some toasted walnuts and goat cheese. Her walkie-talkie goes off. I hear her supervisor ask if she can come in an hour earlier tomorrow and she reluctantly says yes. Her eyes are not crinkling with a smile under her mask anymore. Her eyes look tired.
I keep browsing and reading ingredients.
I figure, based on her tone of voice with her boss, our interaction is over.
But I keep standing there, because there has to be at least 100 different options of pouches. Seriously, 100, and I wanted to get one of each to see what would work best.
At this point, she is closer to me, probably within 7-8 feet. And she says, “How old is your child?”
My throat tightens.
My body tenses up.
I didn’t expect that.
I am already raw and tender emotionally. I have cried the whole way to Target.
The food is for my son Oliver. He is 11 1/2 and being in this baby food aisle, having to do this, was silently breaking my heart.
Oliver is having such serious medical issues that he needs to be on a baby food diet right now. I haven’t been able to talk to many people about it or post on social media because of this particularly painful development in his care.
It’s like we have another reverse milestone to deal with. Or said another way: He is regressing.
Regression is a cruel monster. It means he had the ability to do something and has lost it. Regression is like watching a person unravel slowly before your eyes and being unable to know if they’ll ever be put back together again.
With mitochondrial disease, regressions tend to be permanent. Your best hope is for a plateau.
Who knew we’d be so grateful for a plateau? Even praying for a plateau?
But back to the baby food aisle.
The Target employee is waiting for an answer. How old is my child?
The tears are now rolling down my hot cheeks, and the heat from the mask and the moisture from my tears make my glasses totally opaque.
When you cry with your mask on and wear glasses, it’s a shield. Nobody can tell and in this moment, I’m grateful.
I stammer as I say to her, “Um… well… it’s complicated.”
I think she could hear the crack in my voice. You know — that sound a person makes before they just lose it.
And graciously she just says “okay” and sort of shrugs her shoulders as if to say “no big deal” and I feel relieved. I’m not ready to talk about this out loud, especially not with a woman I don’t know and who doesn’t have the benefit of context.
At that moment I decide that 35 options is plenty for Oliver to try for a week. I walk past the baby monitors and lift my mask to take a sip of the Starbucks drink I’m carefully balancing in the child seat part of my cart. As I walk past the baby monitors, I think about how we just bought another one. I think this is our eighth. That is more than 4,000 nights of worried sleep.
I take a left and on my right is a wall of toys for babies and toddlers. I often stop to see if I can find something Oliver would like. I never can. I guess I’m thinking something new might be there. I wander down the aisle to find a Trolls item (that movie is one of his favorites), but when I push the button on Princess Poppy’s belly, the intensity and volume of the song that blasts out of her small troll self makes me step back. I instinctively look around because I have clearly broken the very nice silence in the half-empty store. I immediately push that little gem on her belly to make it stop. I am now laughing through my tears — I guess there is nothing like Princess Poppy to lift your mood.
By the time I get to the seasonal area, filled with school supplies, the tears have stopped. My heart still hurts, but I am an expert at “pulling it together.”
Even without tears, I am still processing everything. It’s entirely possible this regression doesn’t mean much at all for Oliver's prognosis, but there is also a chance it means some very hard and sad days are ahead of us.
I browse the aisles and my mood lifts further. I LOVE school supplies. Is there anything better than a fresh set of highlighters or a perfectly sharpened box of crayons smelling like wax and childhood? My eyes dart around as I see things so cute that I think, “I’ll get some of these for myself.” The cuteness factor on the notebooks and pencils and Post-its is just next level. I get a few things… okay, actually, I pull a lot of things. I am really digging all the GIRL POWER stuff and the mermaid motifs. Also, they have pastel highlighters, which basically had to be made for me.
I get to the checkout line and the cashier here is chatty as well. I am worried the baby food will come up again. I’m trying to think of something I can say that is less weird. Like: “My son has special needs. He’s 11 and we have him on a temporary pureed food diet.” I think, That doesn't sound quite right. We don’t know if it’s temporary. And is it any of their business?
As she is scanning the items, she says, “Who’s it for?” And immediately I feel that lump in my throat and I try to launch into the thing I just rehearsed, but almost just as immediately she cuts me off. “Oh, no! I didn’t mean the baby food stuff — all these cute school supplies… how old is she?”
I laugh out loud again. I say, “You’re looking at her. She is 38!” She says, “Girl, I love this stuff too. It is way better than when we were kids.” She and I discuss the Lisa Frank Trapper Keepers and folders from our days in school. I tell her with a smile under my mask, “Thank you” and “I hope you have a good day and get some of those supplies for yourself too.”
I push my cart out into the heat. My glasses are now double-fogged from my breath and the humidity. I pull my mask off as I approach my minivan and load the items. Baby food for an 11-year-old, mermaid notebook for this 38-year-old.
I get home and quickly pull out one of the peach, pear, pumpkin, and cinnamon pouches, screw off the orange lid, and hold my breath hoping Oliver will like it… and he loves it. He eats another two packets and I’m thrilled.
I am hopeful that by going backward with baby food, it might allow him eventually to go forward with pretzels and chips again one day. At a minimum, it’s bringing him comfort, joy, and safety from aspirating.
I take my bag of school supplies upstairs and smile as I look at the silver metallic on my notebooks. I organize all my pastel highlighters in my desk drawer. It reminds me I am always ready and willing to learn.
Right now Oliver, and all it entails to be his mom, is my life’s greatest teacher. I am sure it always will be. Despite his body not always cooperating and Oliver fighting off pain almost daily, he still loves so many things in life: a warm bath, a song with a good beat, tickles and hugs, watching leaf blowers, spinning rocks, listening to the wind, holding hands, and reading books. His world is small by any measure, but it is full of love and joy.
All of us feel our worlds are smaller right now. All of us are likely to cry with our masks on. All of us know the pain of going backward when we want to go forward. These are human experiences and they remind us that hope, strength, and love aren’t just cute words, but lenses through which to view the world and creeds by which to live.
There are times these days when the masks we wear are actually a godsend. When we want to hide our tears or aren’t in the mood to smile. Then there are moments when they literally mask our joy. And who can’t relate right now to arriving home, sweat on your chin, and ripping off that mask like you do your bra at the end of a long day? As we near the end of 2020, may we all tackle whatever life brings us with hope, strength, and love… no matter what’s on our face.