The Day I Let Her Go

We really don't know what the future will bring.

Aug 11, 2025

When you spend the early years of motherhood counting calories and pills instead of milestones, kindergarten feels like a far-off dream. But this morning, I saw it come true, her two braids bouncing, her big backpack falling off her shoulders as she stumbled into her first line-up, my heart holding its breath.

No matter how hard I try to imagine how things will be, they never turn out the way I think they will. It turns out my time and my imagination are limited.

Today we got up early, so early that the summer sun had yet to come out, and the birds were only singing half-heartedly. Margaret and I had slept in the guest room under a pink poly blanket, and she told me several times during the night to roll over and give her space. She has learned over the years that I am a chronic night sweater, due to the high amounts of Zoloft running through my body at any given moment. I was dreaming of snow, the big, fluffy kind that stops time and silences the world from its industrial noise. Makes the air visible, tactile, and touchable in contrast to its illusory invisibility.

I didn’t sweat the bed, as she often complained I did. M told people at school that I sweat the bed and that I’m hard to sleep with, and yet she still chooses to sleep with me most nights. I would retaliate by pointing out that she kicks and hits in her sleep. We are both, by nature, difficult. We are both negatives that somehow make a positive together, as if that’s a real thing.

Today was the day we had been waiting for: the first day of school. The day we thought might never come, and yet the one we had been moving toward all along. Since Margaret was born, all her milestones have been leading up to this, trying to get some sort of plan in place for when, if the stars aligned, she could enter school.

Kindergarten seemed worlds away when Margaret was diagnosed with Cystic Fibrosis at two weeks old. It seemed even further when she received a G-tube at three months, and infinitely further when COVID hit in March 2020. Could we keep her alive until she was five? My mind wavered. I didn’t let myself believe it was possible, even though every cell in my body longed for it.

Over the weekend, I read an essay about a paradigm shift in how doctors view the diagnosis of Trisomy 18/13, once labeled “not compatible with life.” I rarely give myself the time to read an entire essay, but this one pressed against so many thoughts I’ve had lately as our society shifts its moral views on abortion alongside advances in healthcare. The article described how a Trisomy 18 diagnosis, with complex medical intervention, can now mean life far beyond a matter of weeks - sometimes decades. Care can extend beyond comfort into a balancing act between probable odds, assumed pain, and projected joy.

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Before our diagnosis, Josh and I agreed we wanted the best for our child, and if they had any genetic conditions not compatible with life, we would terminate the pregnancy. In the article “Noah Is Still Here,” I related deeply to Noah’s mother’s desire for her baby to live, no matter what that meant for the family. We were told by doctors that a life with CF would be hard for us as a couple, potentially painful for the child, and short. A short, painful life. Was that life worth having? That her condition was progressive.

When I tell people this, they often ask, “Will she get better?” or “That’s curable, right?” She won’t, and it’s not. For years, I refused to let myself hope those answers would change so as not to let my guard up. I would believe it when I see it, I told myself.

In Noah’s story, his prognosis shifted from “comfort care” to a lifespan of 20+ years. I related to their daily medical rituals - breathing treatments with saline and albuterol, sterilizing medical equipment, the constant awareness that any day could become a hospital day if the tides turned. I saw so much of us in their story, and yet we are lucky. In the past, parents of kids who tasted of salt were told, “If you kiss your baby and they are salty, they will not live to see a year.” And I am fairly confident that M would not have lived a year without medical care. I am not being overly dramatic when I say perhaps she would not have made it two weeks.

This begs the question: how much joy is enough to justify a life full of medical interventions? Before M, I might have said “minimal.” After M, I say “all of them.” Over time, these interventions become part of us. We adjust. We become the people we once thought we’d never be. And I would say, we are happy-ish. Have purpose, most days. In the article about Noah, there was a quote that said, “having these things happen can give purpose to life, to make some people stronger and have more meaning, but not all people have this reaction.” 85% of couples divorce. It is hard to learn how to cope alongside someone who is also just trying to get by and make sense of hard things in a meaningless universe.

When I was pregnant with M, I thought people with complex medical conditions weren’t part of my family history, and I was certain our baby was healthy. I overlooked my cousins who had autism, polycystic kidneys, and a wide array of learning differences. It was one of the few times in my life I’ve been delusionally optimistic. I let myself believe things would be okay. Those things happen to other people. I guess one needs a certain amount of optimism to have a child in this world, either way.

Over the weekend, we went to a pool with friends. M chose to wear a two-piece swimsuit, despite her G-tube. She didn’t think it was a problem, so I didn’t want to make it one. But I was scared - scared someone would say something to her, or pull at it, or it would fall out. And they did say something. After her first run on the slide, she came running to me, crying, because an older kid had made fun of her button. Then it happened again. I asked her who it was.

If I’m honest, my first reaction was to attack the kid verbally - to point out something about his body that might hurt him the way he hurt her. He happened to be on the huskier side, and my mind went straight to comments about his weight. I’m not proud of that. But I caught myself. I don’t know if it was the “right” thing to say, but I told her, “All bodies have different needs. Your body has a cool tube. We don’t know what his body needs, and he’s probably just curious about you and that button.” I spotted a father with an insulin pump and asked if we could see it. He said yes and explained how it worked, but she didn’t seem to care that I made the effort/connection. She just wanted more slide time.

After that, I noticed M covering her button in line for the slide. But she still went into the water. I was proud of both of us. The pride was joyful. We were both becoming.

Today, like every day, we started with our morning rituals—medications, breathing treatments, and feeding therapy. Josh sorts pills for 20 minutes, making sure all the morning meds are ready, leaving out only the evening enzymes, modulators, and creams. I made myself coffee and fixated on what M might eat for breakfast (I still don’t understand the algorithm of her desires) and lunch. Would she be more likely to eat Pirate’s Booty or salt and vinegar chips at school?

With the added anxiety of a new school day, little irritations bubbled up. I almost lost it on Josh for leaving the shower running while in the bathroom (I’m oddly conscious of other people’s water use, an excellent personality trait, I tell myself). I also felt the urge to snap when we were rushed out the door half an hour early “just in case” there was traffic. I tried to self-regulate, reminding myself I can only control me, something I still tell myself several times a day. Old habits die hard.

We dropped her off at her new school. It’s all a blur now. Life is a blur. Somehow, five years went from feeling like forever to passing in an instant. They were hard years.

I would define faith as the practice of comforting oneself with life’s uncertainty, holding the reality that things don’t usually work out, but keeping the door slightly open for when they do.

I want permission to hope for the best. I want that for you too.

BAD AT KEEPING SECRETS

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