Sacrifice

this one's for the caregivers

When I was thirteen, my mom’s boyfriend took us to Florida to meet his mother. It was my first trip to the Sunshine state, and a foreshadowing of where my mother would eventually live for half my life and a huge chunk of hers, albeit not with this boyfriend. I loved Florida from that first impression. The wildlife of a place is always what makes its mark upon me, and between the tree frogs, green lizards, tropical flowers, and abundance of butterflies, Florida hooked me hard. I wanted to catch and keep everything.

But the trip was more than an introduction to the state’s flora and fauna, it was also the first time I held a baby. And this wasn’t just a baby, it was a newborn, so the tiniest baby I’d ever seen. The boyfriend’s mom was a foster parent. Thinking about it now, I wish I’d taken in more of the home, the adults in it, the atmosphere in general. I wish I knew how my mom had met this boyfriend so soon after my parents split or what convinced her a family trip to a stranger’s house just outside Miami was a good idea. We must have driven, but I have no memory of it. Did we get along? Did we sing in the car? Did we sleep somewhere along the way? I was so completely taken with that little baby, that other than the new nature immersion, she’s all I remember from that entire trip. She still flits into my mind pretty frequently, a little part of my “origin story”, over thirty-five years later. Her name was Danielle.

I wanted to take Danielle home. Like the creatures I marveled at outside, I wanted to keep her. Something in my barely formed adolescent brain convinced me I’d love her more than anyone else could, and if I was allowed to keep her, I’d have taken care of her better than her foster parent, better than any parent, in fact. Somewhere between eleven and thirteen I’d started babysitting, but never with an actual baby. And yet, holding Danielle on this stranger’s living room floor, I knew I could be a mom.

Is it a wonder I had my own first child only eight years later, at twenty-two? I got married and became a mom as soon as I could because it was the only thing I felt (stupidly) confident that I would do well. I’d done the right thing first–go to college–and then, just a few months after graduating, I dove into motherhood one-hundred percent committed. I found out the hard way newborns don’t just appear on your living room floor bundled in soft blankets and smelling like soap. You push them out of your broken body, they are an absolute mess of blood and fluids, and then you have to piece your body back together as well as you can so that they can use up the rest of it. But I was mostly happy to give myself to my son, in that way that only mothers ever have to experience. Sure, some, maybe many, dads do a lot of the care these days, but there is no comparable experience to growing a tiny human inside your body, and then attaching that little baby to the outside of your body for another year at least. I did it three times. I won’t lie and say it was all bliss and baby snuggles and rewarding giggles and coos. It was a lot of that. But I also went through some serious postpartum depression, so much confusion and questioning, and my body never quite healed. In fact, my body never felt like mine again until I got divorced nearly 20 years later.

Despite the loss of a viable career path to be a stay-at-home mom, a back–and other body parts–that would never be strong again, and many, many, oh my god so many, sleepless nights, I loved being a mom and the dynamic of that relationship made perfect sense to me. You have a baby, you care for it for many years because it can’t care for itself, and eventually baby grows up and the responsibility continues to wane until it finally fizzles out. Of course, I still have a sense of responsibility to my grown children, but those apron strings are cut. We now have a much more balanced and symbiotic relationship which I’m so grateful for. Although it looks different with each child, there is still a bond, but not one that requires me to sacrifice anything anymore.

For a lot of people my age, there’s a transition to caring for parents, but my father is still very independent and active, and my mother, who is housebound in Florida, is cared for by her husband. Caring for parents, like caring for your children, is the natural order of aging. Although I’m not part of my mother’s care, and can’t speak to it completely authentically, it seems to me that even in really close parent/child relationships where it might be heartbreaking for someone to see their mom or dad slowly becoming dependent on them, caring for parents is at least expected.

It’s that expectation that paves the way for the acceptance and sacrifice and labor that follows. But when the health of a partner suddenly tanks, there’s no expectation in place to gird yourself up with. No nine months of preparation, or what to expect book. No lifetime of gradual acceptance, no mommy and me groups to know how you’re measuring up.

When I held little Danielle, I knew someday I’d be a mom. I signed up for it understanding that it would be messy, unpredictable, scary, frustrating, but full of love and personal growth and it came with a major bonus: the gift of a different perspective about the world. But I also remember, while being married to my babies’ dad, that the thought of having to care for him when we were older actually repulsed me. I’m ashamed to admit that sometimes because it sounds harsh and cold, but it was one of the very red flags that told me something was off in our marriage. I didn’t want to feel that way about him, but I did. It wasn’t the reason we got divorced, but sometimes I’m still so relieved for that strange reason alone.

Ironically, I am my partner Joe’s caregiver now. That care is mild currently, compared to what it was in the first year of his illness, but what I’m realizing now is that the bigger challenge is that the caregiving mindset doesn’t change. When you’re actively taking care of someone else, your body is not yours, your time is not yours, your energy is not yours. You are, by default, spread thin across more than one life. And despite the fact my husband doesn’t need me to sacrifice much of anything for him right now, my brain is still stuck in that mode because I have to be ready for anything. Our relationship shifted the day he was diagnosed, and I’m not sure–I’m not expecting–it will ever shift back to what it used to be.

one of many moments I’ve captured in our first year of living with cancer—this one in a Holiday Inn where we lived for two months.

But one afternoon, out of the blue, I started thinking about how I would feel right now if we were not married and I was not the one caring for him. What if I was only watching from afar and he was in some other relationship with some other woman driving him to appointments, making him soup, or got to be the one holding his hand? Or what if he was alone? This whole imagined fictional scenario hurt so much, I started crying. And I’m not a crier, so that in itself took me by surprise. The shift in me from repulsion with just the thought of having to care for my first husband, to the actual privilege of taking care of Joe is kind of astounding.

I’m not saying all this as a pat on my back, because ultimately, I’m not a huge fan of this role and I give myself zero accolades. Because the truth is, it often feels unnatural, sometimes forced, and it’s completely unreciprocated. I will never get back what I am putting in and I think that’s the hardest sacrifice partners have to wrestle with when their loved one falls ill. It becomes an actual tangible question: Is this worth it? when you face the fact that your partner may never take care of you in the same way. All the same conflicting feelings apply to motherhood, but I expected that. I expected to give myself up to them in order to raise them but I never expected anything back from my kids. In a partnership, it’s a different story. Expectations of an equal relationship have to shift.

I’m not great with shifting expectations and strangely so, it’s more often the little ones that mean nothing in the big picture that irritate me the most. I’m the kind of person who needs to start mentally preparing at dinnertime the night before for a meeting or appointment the next day. I typically start packing several days before a trip just so I’m sure I have everything I need, and every single morning I want at least an hour and a half with my coffee, news and Wordle before I have to report to anyone outside my own brain. I get thoroughly annoyed when I don’t wake up naturally on my own–aka someone is snoring, a dog wants breakfast, the Carolina wren is screaming for its mate. Again.

So sometimes when even the smallest, silliest routines aren’t met, like getting used to years of someone else prepping the coffee only to wake up to cold coffee grounds in a soggy filter. Or being accustomed to having a day or two (or many more) alone in your home to having no time alone ever. Or when making plans for the future–whether it’s a week away or a year away–feels like a commitment you can no longer uphold, it can shake the foundation a little bit. And frankly, sometimes it’s just annoying. Sometimes I get so pissed off that I’m not exactly where and who I thought I would be at fifty. And I don’t think I’ve ever even had a solid idea of where I would be at fifty. I just get angry.

Because it’s not like holding little Danielle, when I could see and feel my future as a mom. When my pre-pubescent brain somehow saw everything so much clearer. When naivety led me into scenarios both harrowing and delightful. When the idea of caring for someone else seemed not only possible, but ideal. Ah…youth. I think this is why I mostly write for young people. I remember how I thought about the world so vividly. And despite its limitations, it was beautiful.

I’m not sure where little Danielle ended up. Maybe she was adopted by her foster parent, maybe she spent her life in a broken system. But I know where thirteen year old me ended up–among many other roles and responsibilities and identities–I became a lifelong caregiver. Even in my frustrations, and there are many, I would not trade this. And unless you have given up a big part your life, or even had to significantly bend your life for another person, you really do not understand sacrifice. I would wager—and I know I’m going to sound sanctimonious—you may not yet even understand the full depth of love.

It is harrowing and delightful. And you never let it go.