Essay from Real Simple

The ultrasound technician has a tiny voice and I wonder if she speaks this way to sound more like the babies in the tummies she rolls gel over each day. She tip toes out of the room and the silence deafens, as the baby in my tummy rolls and kicks, happily full of life. The doctors come back in the room with the technician and very seriously explain that this happy baby has “abnormalities.” I do not realize I am crying until I look up at my husband, Sean, as he wipes the wetness off my face.

I think to myself, abnormalities. What does that mean?

To my horror, the next thought is, Can I still love this baby?

We had found out twenty-two weeks ago that we were pregnant with our first child, elated, shocked and scared. Sean and I decided that we needed to schedule our last vacation before the adventures of raising children ran our lives. So I scheduled the 22 week ultrasound appointment for the morning before we left and packed my bags. But as we walked out of that hospital room I wanted nothing more than to crawl back in bed.

After crying as we packed the car, and crying as we drove to the airport, and crying as we boarded the plane, I sat down in my seat surrounded by hundreds of people and shed my last tear. The doctors had told us that the baby’s brain was full of fluid, something they called hydrocephalus. The fluid was not draining properly in and out of the head, so the baby’s brain was not forming properly. I asked them how we could fix it. Something has to fix this, right? They said we needed to run more tests and wait until delivery.

But somewhere over the ocean, on that crowded airplane, I decided to come back to my question. Can I still love this baby? I rubbed my belly and the baby rolled around as if to say, Of course you can!  I looked over at Sean, annoyed that he could sleep while I was incessantly ruminating over the bomb that had just dropped into our life. I pinched him awake and asked why he was not worried about what the doctors had just told us. He swallowed with tears in his eyes and replied, We already love this baby, that’s all it needs.

Sean fell back asleep and I went back to rubbing my belly. I kept on rubbing, until my head was in line with my heart. I knew that I loved this baby more than I thought was possible, my head just needed to wrap around the sadness we were about to walk into.

A few months later after several unanswered tests, we had a sobering meeting with the neonatologist who planned to be the baby’s doctor. She said that there was a range of outcomes we could expect at birth. The first, the baby could do fine through labor and delivery and then need to have multiple surgeries to fix the issues in the brain. The second, the baby could be born struggling to breath. She explained that with brain problems, babies may not have the drive to breath. If this was the case, we would help the baby breath with a ventilator and later start the surgeries. The third option the doctor told us was that the baby would die at birth. That was the first time I felt a little piece of my heart being torn off.

The baby’s head started to grow so large that the doctor scheduled a C-Section for March 17, St. Patrick’s Day. Labor pains never came so we walked right into the hospital at 7am on a dark March morning. Sean was convinced I was going to die and I was convinced Theo was going to die. Our optimism had taken a big vacation. But at 9:22 am, I did not die and nor did that beautiful baby boy, Theodore Edward.

I spent four nights in the hospital, recovering from the surgery. I spent my days wheeling down to the NICU and the nights wondering how Theo was doing. Who was taking care of him? Is he happy? Is he being held? Is he soothed when he cries? I desperately wanted to do all the things a mother is to do, but my body needed healing. I did not know then that my heart also needed preparing.

As the days progressed, we learned more about Theo’s conditions. His left eye was fused shut and his right eye would likely never have sight. The pinky on his right hand did not have any bones. His nose slanted to the left like a boxer who has been in a rough fight. And when he could not keep food down, we learned that he had massive bubbles in his bowels, blocking food from ever nourishing his body. The last bit of testing came in on Theo’s fifth day with us; it was from the neurological radiologist. Theo had only 10% of a brain. That last bit of news was the hardest to stomach; it’s the type of news that can still bring waves of violent tears.

The doctors sat us down to lay the cold, hard facts in front of our faces. Either we could operate on the many issues plaguing Theo and postpone his death or we could stop giving him nutrients and fluids intravenously and let him go now. I was holding Theo at the time and all I could do was let the tears fall and beg him not to leave us. Everyone left Theo’s tiny NICU room and Sean and I asked the question, How can we be asked to let our son die? But we both knew the answer was simple, let Theo go peacefully. No surgery, no pain. Only love.

We moved into a small room hidden away in the rear of the NICU and started to live our life with Theo while watching death take him over. The doctors warned us that without food or water, babies only live a few days. Sean went home and packed me three more pairs of underwear and we settled in. We decided that the only way to get through saying goodbye to our son was to show him the world. So we took Theo outside of the hospital for his first breath of Colorado mountain air and a walk in his stroller. We came back inside to our hospital room and cried. My heart was heavy with the realization that this was the last time Theo would enjoy a walk with his momma and daddy. But the days wore on and the doctors kept checking his heart beat. Strong as the day he was born. Is this normal? I would ask. They had never heard of a baby holding on this long. So we continued to love our sweet baby Theo, the best way we knew how. We ate while holding Theo, we slept while holding Theo. I can remember sitting for hours at a time just holding him. We read him the books well-meaning friends had given us as his “first book.” We sang lullabies to him and danced with him in our arms. I told him all about his momma and all about his family that he would never meet. I told him about life’s ugly truths and painful journeys that he would never have to walk through. And we kept going on those stroller walks, every day. For 24 days.

Then one Sunday afternoon, Theo very peacefully took his last breath. I was holding him in my arms, just the way we had planned. He came in to life in our arms and if we could do one thing for his short life, it was to hold him on his way out. Five days later Sean and I stood in front of hundreds of people who had gathered to say goodbye to Theodore, yet had never met him. We stood up there and we told the world who our son was. Theo was love. People nodded their heads in agreement; the pictures from his website had conveyed that too. We did not need to say a thing, he gave them all love.

Theo might have been born imperfect, not made for this world. But in that seven pound body he carried enough love to cover this earth. He did not cry or fuss, instead he let us hold and coddle him for 24 days. He let us learn, really learn, for the first time what it means to love. Love enough to let it go. Let him go without pain or suffering, Let him go.

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2 thoughts on “Essay from Real Simple

  1. I read this post through, beginning to end, twice. Then, I read the last part again.

    I am deeply impacted by your story, Emily. And I am confident that this story is one that women need to share…

    Your description of love is so true. And the way you and your husband chose to love Theo and talk to him, and take him out into fresh air, and hold hold hold him … and let him go… it is the heartbreaking, and deeply inspiring.
    Both. At the same time.

    Thank you for so bravely allowing others to hear your beautiful mother’s heart.
    Thank you.

    K

    • Oh Miss Kelley….thank you! I would not have the courage to take these thoughts from the mess in my head to the words on these pages without your kind help.
      And I am so grateful for women and men like you, who have been given a gift of love from my little man. It reminds of his beauty, instead of my sorrow.

      thank you thank you!

      EM

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