The Weight of Grief

Last night, although she is fine now, my daughter stopped breathing. I realize that, for many of the parents of preemies, an apnea spell isnt considered a big deal. But it's a big deal for me. You see, I've never seen that respiratory rate hit "0" and the word "APNEA" flash across the screen, while the oxygenation drops and flashes and the heartrate begins a descent towards that horrible zero.

During Maya's care time, Bobby would set his oxygenation alarm off but would bring himself back. We joke that it is sibling rivalry. He's saying "Folks, the show is over here" while we are busy focused on his twin sister. We did her bath (she cried, I got to dry her off and she just clung to me as if I were all there was in the world) and then Peter held her. She just collapsed on him. Her respiratory rate was high, well over 100 breaths per minute for the entire half hour (it would go back and forth between normal and high). She was so wiped out from her bath, which she looked completely miserable in. She went back into her isolette and we began Bobby's care, complete with a bath (he wined but didnt really cry, Peter dried him off) and then his holding. As Bobby was being weighed, pre-bath, Maya's monitor went off and, when I looked up, I saw that glaring zero, blazing in a red background. APNEA is flashing across the monitor. The nurse seemed unfazed. "It's okay," she said. "She'll bring herself back."

But for those seconds (which, in retrospect, I am sure was all it was even though it felt like a lifetime to me), my daughter wasnt breathing. My beautiful, precious girl... I looked in on her and she looked so peaceful, so... alive. Yet, the monitor continued to tell us she wasnt taking in air. That she wasnt breathing.

The nurse was right. She did bring herself back without stimulation or intervention and she was fine the rest of the night. But I wasnt. I silently cried the entire time Peter held Bobby. And once we hit outside, to where we call "Sophia's garden", I broke like the Hoover Dam. Peter just held me while I sobbed. The weight of all the grief finally spilled over and I couldnt control it.

I am so tired of being told how grateful I should be that Bobby and Maya are alive. That we should count our blessings that they "at least" made it through their 27th week. Do these people not think that I know that? That every single damn day is a miracle and a blessing? That I thank God every second for the fact that they seem to be healthy and doing so well? Can they not fathom why I am grieving a pregnancy that ended too soon- not because I wanted to grow bigger or feel more pregnant but because babies NEED 38-40 weeks to fully develop?

Even though they died, I am grateful for every second with Nicholas, Sophia, and Alexander. While some people acknowledge them and say things like or "God had a plan for them and they just needed to make sure their brother and sister got here" or "they paved the way for Bobby and Maya to be born safely" and think they are being kind, (and, again, I know our little saints were watching over their brother and sister), can they not understand that the price was high? That our children are dead; they arent coming back. I cant go and tell them "thank you" and give them a hug or kiss. I hold a marble box to my breast instead of their mouths. I clutch a blanket instead of their hands. I listen to rain falling against their nursery window instead of their cries. I will never be able to see them face to face until I leave this world. They paved the way? Is that some sort of consolation prize?

Mothers, regardless of whether or not they have lost a child or had a baby born preterm, have an instinct, an innate need to protect their children. We kiss the booboos. We stroke their hair to mend their broken hearts. We laugh with them. We cry with them. One of the earliest ways we do that is by getting them here safely. We dont smoke or drink while they are inside of us; we nourish them with good food and positive words.

We give them those 38-40 weeks.

And, when we fail (which preterm mommies believe they have done, regardless of the kind words of "but you got them this far..."), we have failed that our 2nd task (the first being to love them unconditionally) as a parent. We have failed to protect them. To give them the best first start that we could.

And for that, I wept. For those missing 12 weeks. For the cervix that wasnt strong enough to hold Nicholas, Sophia, and Alexander inside. For the body that couldnt support our miscarried babies. For the uterus that just couldnt expand anymore to grow Bobby and Maya. For the IV sticks and the bright lights and the overstimulation and pain that their little bodies have had to endure and continue to endure, all because "I got them this far...". Because I couldnt do more. Because my body couldnt. Because it failed. Because I did.

And, to Peter's credit, he just held me while I cried. There were no comments of "You didnt fail them" or "You got them this far" or "You should be grateful." There was just understanding because he knows well that no matter what he says, the guilt will always be there. That no matter how old they get or how well they do or how right the world seems to be, that under the surface, I will always want to tell them how sorry I am. How sorry that they cant grow up with their siblings. How sorry I am that their first moments- weeks, months- were not with their father and I, but in a sterile NICU, where nurses and doctors spent more time with them than we were able to do.

When the crying ended and the kisses from heaven began, we walked to the car, quietly. There werent words for what we had shared or for the what are going through. Just silent prayers. God, please, please, just let them be okay. In spite of everything else. Please. Let them be okay.

***

This morning, I got up and after pumping, I went for that walk. It is a dreary day. It rained last night and the world outside is in a fall Technicolor that only rain can provide. I walked through the park and, as I came through the housing development to walk home, I passed an elderly couple. Drizzle had started to fall. Kisses from heaven. I smiled and the gentleman said, "It's not a great day for a walk."

But to that, I replied, "No, it's a perfect day. I love the rain."