I was missing you on the day things crumbled. My cart seemed so bare two days before Christmas as I struggled to procure the few things your Dad and I needed, trying to make the best of our holiday for two we felt no urge to celebrate.

I didn’t know then why Fairway Market was spinning and going black or why my heart was flailing about or why the vision of the woman cuddling her toddler in the cheese line suddenly felt no less barbaric than the act of trying to exist.

All I knew then was that I missed you. What I know now is that the towering experience of missing you was layered with a malfunctioning nervous system and I think back on that space in time with sorrow. And with a pointed acknowledgement of human fallibility. That space in time when I sat in my car and in my body spinning out of control trying to fathom your absence. An impossible feat under normal circumstances, an utterly defeating experience in the presence of unregulated blood pressure and minimal blood flow to the brain.

I dialed 911 as my heart relentlessly beat out of my chest.

They wanted me to try to regulate my heartbeat with my breath in the emergency room. And try with all my might I did, the same way I had concentrated on breathing every time I found out that you would not be coming home to us.

“Just keep breathing” I told myself for three hours straight in the ER as I had constantly told myself in grief. I was hustled from room to room for test after test I could barely withstand, confirming to numerous technicians that I was not pregnant as the tests seemed to confirm I wasn’t dying.

I thought I might be having a panic attack as that was what I knew, dysautonomia was something I wasn’t familiar with at the time. “What is causing your panic attack?” they would ask. I did not tell them about you, though I knew sharing my pain could be a healthy thing. But not then, because I had to keep breathing. I also knew one blank stare or platitude would have very well made me stop. Why my experience of you does not count in this world I will never understand, my sweet children. What I did understand then was that I was one dismissal away from fainting. Or vomiting. Or tackling someone, who knew?

I sailed into the CT scan room on a stretcher, taking note in my stupor of the sign by the door:

“Be sure to inform technician if you might be pregnant”

“Yeah sure. Will do, assholes” I silently answered the sign, the lack of blood flow to my brain not dimming my sarcasm any.

“Any chance you might be pregnant?” the technician cheerfully inquired. The sign alone is not enough, apparently.

On the verge of fainting and throwing up for reasons lurching and unknown,

“NONE WHATSOEVER” I practically hollered.

The technician made the bright decision to stop questioning me.

As I was two months shy of turning 45, I had to wonder, as any sane human would, when the fuck this question was ever going to stop. For as long as the fertility industry keeps assisting women to manufacture pregnancies in their 50s and 60s, the answer is probably not for a while.

Have I told you we live in a silly world, kids? In a world that is interested if you are trying to be, might be and are pregnant, but in a world that cares very little about your experiences when you can’t be.

I walked out of the ER that day with a clean head scan and a clear chest x-ray under my belt, my heart still beating.

In the weeks and months that followed, I found myself strangely fighting for this life I didn’t choose without you in it. “Just keep breathing” I’d tell myself, through recurrent close call dizzy episodes, heart palpitations, shortness of breath, extreme sensitivities to darkness and sound, nausea, digestive problems, rapid weight loss, senseless panic born from nothing and unexplained overall debilitation.

Several times a day I would feel like I was dying and I’d check my heart rate. “See, your heart rate is in a normal range, you’re not dying” I’d say to myself as many times as I had to. After all, none of the doctors were finding anything, I had only my heartbeat and breath to look to for evidence.

Like with you, I just didn’t know.  Would this go away fully or a little?  That my condition was permanent, a very real possibility.  From you I learned that anything, anything both assumed and precious can be gone in the blink of an eye for reasons unknown, or reasons perhaps non-existent.  And so I continued to dance within the paradox brought by your absence – wondering how much more I could stand to lose while suspecting that if I’m surviving the loss of you I probably can survive most things.

There was not one second during this gravely compromised time I felt fortunate or better off for your absence, my sweet children. Not. One. Split. Second. I had long ago acknowledged that I may very well never have this kind of moment in my future, those sophomoric moments of blinded simplicity where your mind is telling you things are as they should be, that they’ve worked out for the best. Your Momma is many things, not all good, however delusional is not one of them. My soul knows full well there is no sense to be made of your absence – “reasons” in cases such as this are purely a desperate earthling concoction.

About a month after my diagnosis I was having my ribs poked as a matter of protocol. Unlike at the fertility clinics, this time I was one of the lucky ones and unlike many who get to have children I understand that my good ticker is mostly a matter of luck, not achievement.  Or of spiritual validation, for that matter.

I had never heard my own heartbeat via sonogram before. I listened in awe to what was and was then promptly flooded by what wasn’t. As the different tones from the various angles ricocheted about I found myself wondering what your heartbeats, even one of them, would have sounded like, realizing that mine was the closest I’d ever get to knowing.

Imagining that which will never be is both a desolate and inevitable process. Starting year four without you, the “I will never” realizations come less often. I have “I will nevered” your faces and voices and personalities and many of your challenges and milestones – this was my moment to release your heartbeats that never were. “I will never ever hear my child’s heart beat” I said to myself affirmatively, acknowledging yet another “hidden” loss of infertility. This is one coping mechanism I use, still relevant three years later, to acclimate myself to the absence of your presence.

I was positioned on my side, turned away from the technician as I breathed the lump of emotion into and then through myself. Twenty four embryos and just one heart beat left – mine, plodding on with all of the heartbeats I will never hear mysteriously enveloped within it. Mine, with a power both unique and undeniable all its own.

Days later I was strapped to a bed in a standing position, hooked up to a heart and blood pressure monitor. I enjoyed the novelty of ethical and attentive medical care, as the hospital staff was light years more acknowledging of this temporary glitch in my nervous system and the disruption is has brought to my life than the fertility industry ever was over the havoc wreaked by your non-arrival.

And I got to tell a nurse all about you while hooked up to the machines, a kind, realistic and curious nurse who listened and empathized. I thought the machines were going to go haywire but they didn’t. I thought it was amazing that I talked about you on and on with only a few rapid heartbeats, finding you more and more embedded in my current reality, the aim of a healthy griever no doubt. But then I realized, it’s the conversations where you are overlooked and denied that cause Momma’s fiery heart to beat with unbridled fury. People who empathize and who are willing to hear another person’s pain are so good for the heart.

It’s because of you I was able to look at my nurse and assure her that, after all I had been through I had “more than enough coping skills to kick dysautonomia’s ass”. It is because of you I’m able to take what would be a crisis for some and plow through it as though it’s just another obstacle. And it’s because of you I understand luck.

Returning home from my official diagnosis on Feb. 14th, I felt lucky. I had just found out there was likely no permanent damage and that I would receive the privilege of recovery, albeit a slow one, possibly a year long. I was feeling relieved and grateful and sad, as I had sobbed over those who have more permanent kinds of dysautonomia on the way home. Dysautonomia is basically an occurrance of random bad luck, so as your Dad was fiddling with the keys to our front door I noted: “You know, with baby making we were the unluckiest of the unlucky. Now I get to be the LUCKIEST of the unlucky. Which might be pretty nice after all. I’ll take it.”

Sia/Elastic Heart//And another one bites the dust/But why can I not conquer love?/And I might’ve got to be with one/Why not fight this war without weapons?/And I wanted it I wanted it bad/But there were so may red flags/Now another one bites the dust/And let’s be clear I trust no one//You did not break me/I’m still fighting for peace//I’ve got thick skin and an elastic heart/But your blade it might be too sharp/I’m like a rubber band until you pull too hard/But I may snap when I move close/But you won’t see me move no more/Cause I’ve got an elastic heart/I’ve got an elastic heart/Yeah, I’ve got an elastic heart//I will stay up through the night/Let’s be clear I won’t close my eyes/And I know that I can survive/I walked through fire to save my life/And I want it I want my life so bad/And I’m doing everything I can/Then another one bites the dust/It’s hard to lose a chosen one

14 thoughts on “Heartbeat

  • So much here to unpack. Particularly like the parallelisms … Will come back again when I’m not running out the door in the rain to an appointment. xo

  • Thank you so much for sharing this….
    I remember one of my many pelvic ultrasounds, the tech turned on the sound and I heard my own heartbeat and began to cry…she realized what was happening and gently told me that was my own heart…it hurt so very deeply to realize that same loss…
    thank you for sharing this, and it is true, you are going to “kick dysautonomia’s ass”

    • Ouch. The might of our own heartbeats layered over those that are non existent is a bit too much to fathom. It helps to know I’m not the only one.

      And yes, after a few more comments I’m off to kick dysautonomia’s ass again today:-)

  • I’ve read this four times and am struggling on where to begin the unpacking all of this. There is so much truth here that so many in this world fail to even begin to recognize. In the process of struggle to get a diagnosis for something so debilitating, you’ve had to revisit the tidal waves of grief from losing your children. How anyone could fathom telling you “at least” over this grand loss is beyond me. I guess I’m left with telling you I’m so sorry. And to thank you for sharing your story. May you continue to find healing, both from the trauma of dysaitonomia and from the loss of your beautiful children.

    • Thanks so much Cristy. As I replied to Pamela, me too as far as the unpacking. I appreciate you validating that our experiences force us to see life from an all too often un-noticed perspective.

      I figure the tidal waves of grief will always be there though lessening with time. I have to say though in the midst of my emergency I did have a WTF moment as I entered the CT scan room and read the sign…I was like “Seriously??” No one in the ER asked me if I had kids though, so I count myself lucky on that.

  • Thank you so much for sharing your story. I am trying to come to terms with being an infertility survivor. I appreciate you putting it all out there so I can see I am. It the only one going through this devastating reality.

    • Dear Emily,

      I’m sorry for your losses. I’ve found it mind-numbingly difficult to process my losses and new reality when there’s practically no reflection of it in the outside world. You are definitely NOT the only one, it’s that not being included in the human conversation, for one, can make us feel as though we are. It takes a staggering amount of extra effort to honor our feelings when they are rarely, if ever, validated as normal, however honoring my feelings the best I can has been one of my tickets through this.

  • Thank you. Another amazing post. I just love your writing!! Yes, I think it’s the lack of acknowledgement that is most painful for me, having my experience and my children that I lost be “overlooked and denied.” It is most painful coming from my mom and sisters. They have really been hurtful lately and I’m still trying to figure out how to let their comments go.

    • The lack of societal acknowledgement for me has been almost as painful as the absence of my children and loss of parenthood. I’m not sure about how to let comments go either, especially when they are from people who are supposed to be supporting you. Our experiences give us a bird’s eye view into the failings of human nature, such as not using our built in capacity to empathize and support one another, for example. I’m just coming out of the process of being blown away by all of the aversion and mindlessness out there.

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