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The Day I Desperately Missed the NICU

mom holds premature baby's hand

Sometimes, as I scroll through Facebook, I happen to scan over some article or blog post about preemies, NICUs, and child and infant loss. It comes with the territory of being friends with so many people who have had experiences similar to ours. Sometimes I click, and sometimes I don’t. But even when I do choose to go down that road, it’s with the goal of reminding myself how many kinds of pain there are out there, how many people have gone through horrific experiences, and just how far removed our own story is, having unfolded just over four years ago.

The defenses I’ve built up over these four years are usually strong enough to keep me at least superficially intact under all but the most extreme circumstances. So when I saw an article about being a NICU mom, and it looked like it might be a good read, I clicked. And then I saw the photo.

I’d never seen one quite like this. Two boys, babies this small, twins who looked so much like ours. It was a mother, sitting in a NICU with her shirt slightly open to allow her two tiny twin sons to feel the warmth of her chest. The babies were small, probably about two or three pounds apiece, nestled against her and against each other, one with his soft, wiry little arm around the other. Peace, calm, and transcendent joy emanated from the three of them–from the mother’s face, the babies’ unbelievably fuzzy little heads, their bronzy skin.

And then I put my phone screen down, almost dropped it to the ground, and started to sob with uncontrollable force. I didn’t know I could still break down like that. I gasped for air, thrown back to my desperation to hold my boys like that, and even more, to have them hold one another like that.

READ: What to Do About the Bris When He’s in the NICU

For so long, it was all I had focused on. They’d been born so absurdly early, barely 25 weeks into my pregnancy, but they’d stood a chance. They were at risk for so many catastrophic complications, but their bodies started out perfectly healthy. We knew the odds, but we’d also heard the many stories of preemies as small as they were one day going home. So, amid the daily roller coaster and the increasingly bleak prognosis for them both, I focused on the promise of seeing them together again. They just needed to get well enough to be able to touch each other, I told myself, to be able to be held simultaneously, to allow their mystical twin connection to aid their healing. They had last been together in utero; once they could be reunited, feel one another, smell one another, feel the rhythm of the other’s heart, they would be on their way to being alright.

But they never did. Kalev was barely ever well enough to be held at all, and my arms were in the most acutely painful state of emptiness for a full six weeks before I got to hold Baer. And they never, never got to feel one another in this world. Kalev passed away suddenly before it was possible. And from that day on, for the next month and a half, we tripped over our words every night as we called the NICU to check on Baer. We no longer asked to speak to the nurses for the Homa twins; “baby Homa” came out so unnaturally.

READ: 17 Things to Say to Someone Who’s Lost a Child

We have another son now, so Baer has a wonderful little brother, and we hope to have more children. But the feeling came back last night, roused from its latent constancy, and it was too much to bear. No matter what other children join our family, or how much joy they bring, or how grateful we are, or how at peace we are with our own rough journey, my arms will never feel properly filled, because I never held my twins together, never felt their chests rising and falling together, never experienced our hearts syncing and our skin warming to one another’s, never shifted my nose from one tiny fuzzy head to the other. My arms will always be just a little bit empty. And I can only pray that Baer will never feel a similar lack.

Every parent wants to leave the NICU. If your child is there, your child is too sick to be home; that is not an enviable state. Every NICU parent is desperate for the end of the stay, for the sacred right to care for their child, for the blessed normalcy of never having to leave their baby behind. But what if a baby never comes home? This is not a feeling every NICU parent will understand. No matter how horrific and terrifying the journey, if parents and child(ren) walked out of the hospital together on the final day, the NICU holds no nostalgia other than that for the beautifully intimate relationships that are formed there.

But what if the NICU was the last place your family was whole? Today, I long for that feeling. For the reality in which we were the parents of the Homa twins, in which their existence as an inseparable pair was taken for granted. No one in the NICU is ever more than cautiously optimistic, but still it was there: the hope. The hope, and the very real possibility, that they would lie together soon, would be scooped up in my desperately waiting arms, that the three of us would be skin to skin to skin. And that we would all go home together, to sit like that as often and for as long as we liked.

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