I sit on the therapist’s couch and tap my toes, staring at the clock. I’m anxious, and that comes out in my ankles, my fingers, my toes, my eyes darting everywhere but her eyes, landing there only briefly to acknowledge human connection. Trained. It’s rude not to look at someone’s face while speaking, but I’ve always felt too exposed to do it for long. Sentence, connect, flit away like a dragonfly on a reed. Connect again, feel vulnerable, retreat.
And I watch the clock because I only have an hour. My god. An hour. So much to accomplish in an hour. It never feels long enough, especially during the first “intake” appointment. Let’s get to know me. My history. I’ve never been good at summarizing. Too many details. They all seem important. But I’ve rehearsed this story so many times. For every doctor, nurse, and therapist. For all the family members or distant friends with questions.
“So, why were in the hospital? When were you diagnosed?”
Well … How far back do you want me to go? Just to this summer? Or when the trouble seemed to start? Or even further back to the first abnormality? All of it? Okay, highlights then ….
- 2013 – miscarriage, odd bloodwork, APS diagnosis. No treatment.
- 2014 – high-risk pregnancy with Lovenox injections. Severe pre-eclampsia and emergency c-section at 32 weeks. Congestive heart failure five days later. Son in NICU for six weeks.
- 2015 – two mini-strokes before son was a year old. Discovery of torn mitral valve and very active APS. Starts warfarin.
- 2016 – 2022 – Nothing.
- 2022 – Discovery of afib
- 2023 – Hair begins falling out. Weigh sheds without reason. Annual bloodwork shows abnormalities. Pneumonia in May. requiring hospitalization. Bleeding and clotting issues. Lupus diagnosis in August.
- 2024 – Continues to deteriorate despite treatment. Now, we suspect much of this was heart failure. Back then, we thought it was lupus. Out of breath constantly. Frequent violent vomiting. Exhaustion. Feet swelling. Weight continues to vanish. Begins coughing up blood. Admitted to the hospital on April 29th for severe anemia requiring a blood transfusion. This begins a three-month hospital stay that includes three times on the ventilator and heart surgery. I end up spending a third of 2024 in the hospital.
- 2025 – We’re only in February, and I’ve already been admitted to the hospital twice. However, treatments seem to be working overall. My hair is even starting to grow back. I can climb stairs again. I’m working again. But I don’t look like myself. The steroids have destroyed me. I’m still learning what it means to feel well. My lupus is in remission. We are trying new meds to better support my heart. We are hoping physical recovery is reaching stability. Now, it’s time to manage the emotional damage.
I try to summarize this. Some of it, the oldest bits, I’ve trained myself to be calm. I don’t choke up any more talking about it. I’ve had so much practice retelling this story. Seeing the wide eyes, the raised eyebrows. “My gosh! That is crazy!”
“Yes, yes it is.”
One day, I may not choke up talking about this summer. I’m certainly getting better at it. Firmer. More removed. It was a thing that happened. It sucked. It’s not still happening.
But sometimes it hits me how horrific this was. How my husband had to ask the doctor if I was going to make it, lying unconscious with a machine breathing for me. “It’s too soon to tell,” she said. And he’s had to carry those words. He will always carry them. “It’s too soon to tell.”
And then I woke up.
And then I went back on again. I didn’t know I could wake up a second time, but I did.
The third time was for surgery, so we knew it was coming, but I still hated it, dreaded it. It’s not a long nap. It’s not a dream state. It’s empty. You waste away. You’re torn up from the inside out. This is not what you’re meant to be. But there I was. Three times.
And I have had to shove that down and try not to cry every time I think about it.
But my son’s birth? I can typically discuss that without tears. It happened. It sucked. But we are both still alive. And that’s what matters, right? It doesn’t matter if your birth plan fell apart into the exact opposite of what you hoped for, right? That’s what they say. “All that matters is a healthy baby.”
“So … there’s trauma even before this summer. Your birth, well, that was traumatic. That’s trauma.”
I nod, slowly. I suppose I knew that. Maybe had not acknowledged it, but it would make sense.
“Did you see a therapist about it? Have you dealt with that trauma?”
I shake my head. “I didn’t realize it at the time, but I was in survival mode. I was surprised at how okay I felt about everything, but I know now it was because I couldn’t feel everything in the moment because, if I did, I wouldn’t be able to take care of my baby, and I NEEDED to be there for HIM. I didn’t realize I hadn’t dealt with it until he was three. My niece was born and it … it was my first time on a maternity ward.” I stop because the tears are coming and my throat is closing. I take a breath, compose myself, and choke out, “I spent three days in bed after that, angry. I tried to write about it, to process. I thought I had.”
“It sounds like there may be some unresolved grief there.”
“Maybe? I don’t know.”
“And you just skimmed right over the miscarriage.”
I blink. “It … it happened so long ago, I mean …”
Was it horribly traumatic and awful at the time and I don’t like to talk about it or think about it? Yes. It grieves me. But it happened nearly twelve years ago. I have a living child that I care for. That numbed the pain.
But what does it mean that I haven’t grieved? That I have unresolved grief? Why do we have to go all the way back to things from over ten years ago. I don’t have flashbacks to the NICU, not right now. I have flashbacks to the morning I went on the ventilator. I have flashbacks to waking up the second time without pain meds, where I had to sit and wait, unable to speak, while the doctor was facing an emergency and couldn’t help me. I have flashbacks of struggling to breathe and the kind nurse trying to calm me down by thinking about the ocean.
Once upon a time, I may have had flashbacks of the c-section and the ICU and the NICU. But it’s numb. It’s far away. My sadness that it was my only birth experience? That it was never “redeemed,” in a way, “fixed” by a normal birth … All I know of birth is the curtain at my chest with the small spray of blood and my child covered in wires with a tube down his throat. Of only holding him for an hour or two a day because he was too delicate to be outside his bubble for long. Of the lactation consultant telling me I had failed because I kept sleeping through my breast pump alarm at night–that I would never be able to provide nourishment for my child. I don’t get a do-over. That’s it. That’s my birth story. Wires and waiting.
Is it victorious in its own way? Yes. I survived. He survived. We both came home. You can’t even tell he was a preemie. The child is so tall and vibrant and kind. My stomach is wrecked after the c-section, but you can’t tell thanks to high-rise mom jeans (never gonna give you up), but that’s the only sign of what we went through over ten years ago.
But, apparently, I haven’t fully grieved. I’m still carrying all of it. On top of everything else.
So, now, I must learn to grieve and release. I think. I hope.
We’ll see, won’t we?
SJ Bocci Writes 