WARNING: I talk about child loss, relationship hardships, and if this is not for you, don’t read it. BUT if you are in pain, longing for something more, it is the roadmap I am using to comfort my disappointments at the moment.
Mother’s Day is a weird trip.
We get one day to do what we want. Say what we need. Fill our depleted cups with the rare permission to have our own wills and desires.
This Mother’s Day was joyous for me. I hope it was for you, too. Life is hard. Motherhood is part of life, so it is also hard.
I wouldn’t change it. And I’m not just saying that. I like it.
Wait—I love it.
I look back on my life before M. It was full and beautiful. But life with M? My range of emotions and understandings has expanded into realms I didn’t even know existed.
It is fucking hard.
The Birthday That Carried Weight
This year, my birthday (last week) was both good and hard. I did my best to cope with the sadness and disappointment I tend to wallow in when the passage of time becomes too visible. I surrounded myself with people I love. Still, there are always things outside of my control—things I’m learning to cope with. Or maybe I’ll always be learning. In whatever way makes sense to this lump of flesh I live in.
On that day, M told me she wanted a sister with Cystic Fibrosis.
We were on the couch, bodies entangled. Cuddle time is a form of currency—one where all attention is funneled into the now. It’s a fabricated mood booster for me. Not so much for Josh, who doesn’t always need the same kind of touch connection. He and I both carry our agendas and often forget the reset that a shared cuddle can offer.
I asked her why.
“Because then we could play together. Then I could meet someone else with Cystic Fibrosis. I wouldn’t be alone.”
I didn’t speak. I just held it. We both longed for the same thing in that moment. A deep, painful tightness gripped my chest, and vomit threatened my throat.
Me too, I thought.
The Weight of Secrets
My therapist once told me I should never tell Margaret that we terminated two pregnancies after she was born due to genetic mutations. That it wouldn’t serve her. That no matter how I said it, it would be too painful for her to hold.
“What if she finds the ultrasound photos in my drawer?” I asked.
“Still no,” she said. “Make something up. Sometimes information can be too hurtful. This is one of those things.”
So when do we protect our children from pain—and when are we simply protecting ourselves from it?
Sometimes I wonder if, one day, the government will come for people like me—retroactively criminalizing the decisions we made with care, love, and survival in mind. I tell myself: we made those decisions with the best of intentions.
To keep our family whole.
Even though we were never really in one piece.
Regret, If We Must Name It
At a dinner party, when the wine is poured and conversation is deepening, if someone were to ask if I have any regrets, I’d say: yes. Two, actually.
The first: waiting until I was 36 to get pregnant.
If you’re out there listening—and you want more women to have kids (as we might also want)—give us childcare. Give us paid family leave. If I hadn’t had to choose between childcare and my work, I would have had kids sooner. If I had ever felt that I could be both a mother and an artist, I would’ve planted myself right there in that space.
But I always felt I had to choose.
The second regret: letting go of the last pregnancy.
Both of them, actually.
But the last one… because it felt more final. The end of something.
And it was.
I didn’t want to do it. I didn’t want to do either. But with CF, we’re told that two kids with the diagnosis might be too much. What if both were hospitalized at the same time, in different places?
In the past, families simply watched their children die. Can you imagine knowing none of your kids would reach adulthood? And being only one person, who do you comfort when both children, both loves, are fading?
A Glimmer of Hope, A Different Kind of Joy
It felt different the second time because I’d convinced myself I still had options. IVF. Another chance. A healthy child.
But lately, I’ve been letting myself believe that maybe—just maybe—M will be okay.
Both pregnancy terminations happened before she went on the miracle drug she’s now been taking since she was three and a half. It was June when she started. It took two whole years for the truth to sink in: she might live a long life.
Or she could.
Because none of us really knows how long we’ll be here.
Not despite our efforts, but because of them.
This is joyous. I don’t take her health for granted for a single moment.
And yet, I still grieve what could have been.
For me.
For M.
For Josh, too—but that’s another story.
The Hard Stuff of Love
Last week, our feeding therapist told us most couples don’t stay together when there’s a diagnosis like CF.
I asked her why.
“Because it’s hard to cope in the same way,” she said. “People need different things in the face of lifelong challenges. It’s hard to be on the same page and feel seen.”
She’s right.
There’s no one way to heal.
No single solution to bandage a wound that keeps tearing open.
Sometimes, I wish we could just find God. Preferably the same God.
I’m not opposed to the idea of a manmade comfort—it just seems unlikely I’ll get there in this lifetime.
Mother’s Day, Again
On Mother’s Day, I got a text. An invitation from a friend:
Would I come to the home birth of their baby and document it?
The due date? July 5th. The same as our second lost baby.
I told Josh I was invited. I didn’t mention the due date.
Maybe he remembers. Not the date, maybe, but the feeling.
The feeling that comes with new life.
Hope.
Possibility.
A continuation of our forms. A way to outlast the constraints of our conscious time.
Living in the Longing
My therapist gave me one other piece of advice:
Hold other people’s babies.
I’m not sure if she meant it as a test of my longing or a salve for it, but I’ve decided to treat it as an invitation to live vicariously.
To heal by allowing myself to take in the joy of others.
To exist in a community where we feel each other’s joy and pain and longing.
Why can’t I delight in holding your baby, just for a moment?
And let go of the hard parts of caregiving?
We’ll see how this goes. How is it going for you with the whole coming to terms that we don’t live forever? I would like to know.
XO, Carissa
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I think there's a reason why it's uncommon for therapists to speak in absolutes like that, especially about something projecting into the future. You can trust in your relationship with M, and with yourself, to know if telling her would make sense in the future. I don't like professionals seeding self-doubt about parenting children that they don't have to parent. Sending love.
Thank you for this, Carissa. I appreciate you.