Friday, March 27, 2009


The grassy fields outside the window blurred together, the pavement flying out from under us as we sped toward...what, exactly? An answer. The moment of truth. The tears came and went, a torrential flood of uncertainty and fear in one moment, and a vast and empty absence in the next. My own mother's words of comfort drifted in and out of my consciousness, sticking sometimes, but otherwise lost in the overwhelming sense of doubt that had made a home in my heart over the past 12 hours. I was awed that a single phone call had changed everything, just like that.

I had been taken by surprise, and I resented it forcefully. I had always been one to expect the worst, in hopes of being surprised, but my careful expectations for the pregnancy had fallen on deaf ears all around me. Oh, you have nothing to worry about, they would say, confidently, their faith in the process affirmed by their own experiences, which, if not flawless, had certainly resulted in a healthy baby. I too, had naively begun to believe in my own invincibility. I was aware of many of the things that could go wrong, and I feared the ever looming possibility, but in a general way. Yes, those things happened, but they would happen to other people. Not me. Not my baby. I was young, healthy (enough), free of family history. There were people out there who didn't know they were pregnant until they went into labor, and their babies were fine. The odds were in my favor.

Oh, the odds, which I would soon come to loathe and then, eventually, cling to for the hope of the future. In the moment though, the odds were insensitive, irrelevant. Your tiny little life and the impact you would make could not be measured in numbers. For now, there was just raw emotion, fear. Love. We passed a flock of sheep and my eyes fell immediately on the mothers, guarding and nurturing their babies. My heart swelled, the tears beginning to spill, and the sight of them (because even they had healthy babies) begged the question that had been brewing since the night before: "Why me?"

We were late. The receptionist handed me a clipboard of paperwork to fill out and I planted myself in the waiting room, both of my parents at my side, to begin the wait. When I had finished the paperwork and we had still not been called, I turned to studying the pattern in the carpet, the glass artwork that hung on the wall, the couple who sat opposite us, holding hands. Were they here for the same reason? Was there someone else out there who was awaiting the final word on their baby's future? Certainly, there couldn't be.

Patricia had warned me that the genetic counselor might be overwhelming, scary, a woman of facts and little compassion. However, when Kathryn called my name and led us back to her office, her voice was soft and sympathetic. I felt immediately at ease. She planted a box of tissue in front of us as we took our seats. She warned us that she would be laying out the facts for us, drawing a picture of what the doctor would be looking for in our second, more detailed ultrasound. We listened attentively as she explained the varying degrees of severity in spina bifida, and a tiny bit of hope flickered to life in my heart. Maybe I could deal with this, maybe it was not severe, maybe all was not lost.

"It's also possible," she said, coming to the end of her explanation, "that we will look today and see that everything looks appropriate." My mom and I glanced at each other and sighed, relieved that she had even mentioned it as a possibility. We were hopeful, and yet there was an unspoken "but..." that seemed to follow her sentence. I knew it was not likely, and yet I clung to the hope that maybe you were okay, or even if there was spina bifida, it would be small, minor.

We were led to the darkened ultrasound room and I assumed my now familiar position on the table. The sonographer breezed in, cheerful, asking if we knew your sex yet and explaining her role in making the diagnosis. As she began sliding the probe around my belly, the flicker of hope in my heart grew brighter. There were your perfect arms, your perfect legs, your perfect heart and kidneys. I watched you, in awe, as you put your hands in front of your face, and then the tiny movements that shook your whole body.

"Oh, it looks like baby has hiccups!" The sonographer exclaimed. There you were, my daughter with the hiccups. It was the first time that you became very real, very precious, very...human. It was a moment I would later recount to Jesse with tears streaming uncontrollably down my face. It was the first thing that would inspire tears in his eyes, too.

And then it was over. The screen went blank and the sonographer went off to consult with the doctor. In a matter of minutes, he was joining us, soft spoken, with a look in his eyes that said it all. He perched on the stool beside me and put a hand on my knee, gentle, consoling me already for what he had not said yet.

The facts poured out and the flicker of hope was abruptly extinguished. He continued, that same look in his eyes, demonstrating on my own back the point that yours had not closed. They went over what this meant for your life, and it was not good news for you, my precious baby, the baby I had carried and dreamed of and planned for since the beginning of your existence in September.

And then? From a very gray area diagnosis, they asked me to make a very black and white decision. Either I would bring you into this life of hardship and challenges, or I wouldn't.

The air seemed to leave the room as the weight of the decision sunk in. How could I possibly be the one to take your life? And yet, how could I bring you into a body that was not properly designed for this world? How could I possibly decide?

Do not judge me for what I have done
For you have not walked in my shoes
She was not your daughter
You did not love her and long for her
As I did and do and always will

You did not feel her and plan for her
And know her and promise her that
You would always take care of her
As I did
She was my daughter

You did not hear the doctors say
That she would be sick
That she already was sick
And that she would be sick until
The day she died

You did not pray to God that the
Second ultrasound would confirm
Your hopes that she would be healthy
You did not see the tear
In the doctor’s eye when he
Confirmed the diagnosis

You did not pray to God for
Her to never have to suffer
For him to take her to Heaven
Where there is no pain
You did not feel her pain
I did
I am her mother

When you simply said to me
That I don’t have the right
To take her life
I know you did not feel my struggle
When you simply said to me
That I have to take her life
For her to be happy
I know you did not feel my struggle

I do not know what God wanted for her
I do not have His wisdom
And neither do you
I know that He loves me
I felt His love through the people He gave me
I know that God did feel my struggle

All I ask from you now
Is that you pray for my daughter
And do not judge me for what I have done
For you have not walked in my shoes
I am her mother

I Am Her Mother
By Joan Vander Male


AnnaMarie said...

How sad Aleina. The day of the ultrasound is burned in my mind too. Images of your child followed by the details of your child's condition, then you are asked for a decision.

Thanks for sharing that poem.


kay said...

So sad for you Aleina. To have to make that decision is the hardest decision in your life. I too, remember all so very well the image on the ultrasound, being faced to have to make a choice. Please take comfort you are not alone, I too feel for you.

Googies Girl said...

The poem says it all. Perfectly. Everything I am to chicken to say to the general masses.
The day of the ultrasound is burned in my mind. It's a girl, quickly followed by a dizzying array of questions. Then the announcement of "we see major problems" to "you must make a decision". I am so sorry. Like Kay has said, you are not alone.