We Still Knew Nothing About Your Future
The hospital visits every two weeks gradually became part of our lives.
The long drive with my husband, the familiar hospital entrance, the waiting room, and the ultrasound examination all became routines that I knew well.
But becoming familiar with them did not make them less frightening.
Every time we went to the hospital, I carried a small hope with me.
Maybe this time, her bones will have grown more.
Maybe she will have caught up a little.
Maybe the doctor will look at the measurements and say,
“She’s growing well.”
I knew I should not expect those words.
But every time I lay down for another ultrasound, part of me still waited for them.
Her head continued to grow.
Her body continued to grow.
Her heart kept beating.
Her blood flow looked fine.
But the long bones remained short, and as the weeks passed, the difference became more noticeable.
Every time another measurement appeared on the screen, I found myself holding my breath.
As the doctors examined her more closely, they began to notice other characteristics as well.
Her long bones were short.
The pubic bone was difficult to identify clearly.
There were also characteristic findings involving the cervical spine.
At first, there had been many possible explanations.
Gradually, those possibilities began to narrow.
Then one day, the doctor said something we would never forget.
“We believe there is a high possibility of congenital spondyloepiphyseal dysplasia.”
The name was so long that I could not immediately process it.
Congenital.
Spondyloepiphyseal.
Dysplasia.
I repeated it silently in my head, trying to hold onto the words.
Congenital spondyloepiphyseal dysplasia.
Until then, there had been many unfamiliar disease names.
Possibilities.
Search results.
Medical terms I had never heard before.
Now, one particular name seemed to be moving closer and closer to our daughter.
The doctors explained that children with this condition could have short stature and that the symptoms varied from person to person.
They also explained that there could be other complications.
Problems with vision.
Difficulty hearing.
Cleft palate.
Breathing difficulties.
I remember thinking that if being short was the main difference, perhaps I could accept that as part of who she was.
People are born with different bodies.
Different appearances.
Different characteristics.
Maybe being small could simply become one part of our daughter.
But as the doctor continued talking about the other possible complications, my fear returned.
What if she cannot see properly?
What if she cannot hear well?
What if she cannot breathe on her own?
She had not even been born yet.
Nothing had happened.
And still, once again, my mind began traveling years into a future that did not yet exist.
Around that time, however, there was one ultrasound picture that always made me smile.
During one of the examinations, the doctor managed to capture our daughter’s face from the front.
The moment I saw it, I thought,
Wait…aren’t her eyes way too big?
In the black-and-white image, her eyes seemed enormous compared with the rest of her tiny face.
Of course, I knew it was an ultrasound.
The angle, the shadows, and the way the image was captured could make things look very different.
Still, the eyes had such a strong presence that my husband and I looked at the picture again and again.
At a time when every hospital visit seemed to be filled with measurements, medical explanations, and frightening possibilities, that one picture allowed me to think about something completely different.
I wonder what she really looks like.
I wonder whose face she has.
Are her eyes actually that big?
For a moment, I could simply look forward to meeting my daughter.
The disease had not disappeared.
My fear had not disappeared.
But while I was looking at that picture, she was not “a baby who might have congenital spondyloepiphyseal dysplasia.”
She was simply our daughter with the ridiculously large eyes in her ultrasound picture.
I began to understand that fear and love did not have to replace each other.
They could exist at the same time.
I could be terrified of what might happen and still desperately want to meet her.
I could cry about the future and then laugh at an ultrasound picture.
I could wish that nothing was wrong while already loving the child who might be born different from what I had imagined.
Then one day, we sat down with a pediatrician.
The doctor was incredibly kind.
He did not simply give us medical information and move on.
He watched our expressions carefully and spoke slowly, making sure we understood what he was saying.
I told myself to stay calm.
Listen carefully.
Remember everything.
Do not cry.
But the truth was, I had been afraid for a very long time.
Every hospital visit frightened me.
Every measurement frightened me.
The moments when the doctors became quiet frightened me.
At first, I had been terrified because I knew nothing.
Now, I was terrified because little by little, we were beginning to know more.
And then, when the pediatrician spoke to us with such kindness, something inside me finally gave way.
I started crying.
Once the tears came, I could not stop them.
Even now, I cannot explain exactly what I was crying about.
I was sad.
I was frightened.
I was exhausted.
Perhaps somewhere inside me, I was asking,
Why our child?
Perhaps I was tired of imagining a future that no one could promise me.
Perhaps I had simply spent too long trying to hold myself together.
My husband sat quietly beside me.
He did not cry.
He did not say anything dramatic.
He was simply there.
And in that moment, having him beside me was enough.
After we left the hospital, I placed my hand over my stomach again.
Our daughter had been there before we heard the name of the disease.
She was still there after we heard it.
Nothing about her had changed.
What had changed was what we knew.
Congenital spondyloepiphyseal dysplasia.
Sometimes the name felt so enormous that it seemed capable of covering everything else about her.
But then she would move inside me, and I would remember that there were still countless things about our daughter that no doctor could tell us.
What would her cry sound like?
What would make her smile?
What kind of personality would she have?
What would she love?
What would make her angry?
What would make her laugh?
How would she surprise us?
Her future was not made only of medical questions.
Whenever I looked at that ultrasound picture, I found myself wondering,
Are your eyes really that big?
What will your voice sound like?
What will you smell like when I finally hold you?
I was not yet strong enough to say,
“No matter what happens, everything will be fine.”
I was still scared.
Of course I wanted the doctors to tell us that nothing was wrong.
But slowly, one feeling was becoming stronger than all the others.
I wanted to meet her.
Not the diagnosis.
Her.
The little face we had watched so many times on the ultrasound screen.
Our daughter, whom the doctor had once simply looked at and called “cute.”
And whether I was ready or not, the day we would finally meet her was getting closer.
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