Beyond Achondroplasia

Growing together with Clara

Like a Phoenix – living the diagnostic


This was writing a long time ago.

This is a short story of the day we, parents, received Clara´s achondroplasia diagnostic.

A month after Clara was born, we received an email from her geneticist to schedule an appointment. During 25 days of waiting for the genetic result, we lived without a life form, in a direction to nowhere.

October 2nd, 2012,

We went to Lisbon, to the Hospital of S. Maria, for the appointment. Anxiety was stark. Adrenaline run through out all my body in a mismatch way.
The appointment was in a prefabricated building. There were children running through the halls. Babies on parents arms. One baby was crying, another screaming and several children were playing and laughing. I saw these other babies and children while we were waiting, but without wanting to see any of them.
At 3:20 pm we were called into an office, where the geneticist was waiting for us. Friendly, the doctor greeted us with a smile and a handshake at the door. After two short circumstantial phrases during the time it took for us all to sit down, the doctor told us: “The news aren´t the best”… And then we heard: “Clara has achondroplasia.”

Then my thoughts stopped.

The blood rushed. I could feel my heart beating in despair.

The fear materialized itself.
And then, with the sound of those words echoing in slow motion in my head, I felt like falling into a black hole. And in a superhuman effort to absorb the tears that flowed like a spring in my soul, I took a deep breath. I needed to breathe again and the air just could not get in.

From the outside, only my gaze could show the inaudible scream I was lost in.
My husband couldn´t say another word to the doctor. He just kept looking down, to Clara who was in his arms and softly, I could hear him saying “Oh, my dear … … Oh, my dear…”.

I refused to go into catharsis there.

I had to be strong. Stronger than I could ever imagined.
But the pain was unimaginable … never before I had felt something that it could even resemble that.

But I had to talk to the doctor. And I chose to ask about the medical management and health issues. “And now?! What do we need to do? What steps to take?” The doctor gave us the American Pediatrics guideline for children with achondroplasia, mentioned the Small Lusitans Association and gave us a letter of medical reference for orthopedics at the Pediatric Hospital D. Estefania.

Clara began to softly whimper. She wanted to eat.
After a while (the necessary social time for an appointment, which could have had a duration of  just one minute, the appointment time came to end. It was 4 pm.
Clara continued in my husband arms, and already manifesting more intensely her will to breastfeed.
After a handshake at the office door, with a strange expression of thanks, we left the office.

The door was closed.

Any hope of “It was just a nightmare!” died there.
And there, also I died.
And at that moment, completely silent, standing in the middle of that corridor, of any prefabricated pavilion, in a space that was no ours, people passed by us, in one way and another in their haste and weariness. Some people saw us. Other crossed us without looking. Lives were still happening on our side. And we, static, with Clara in his arms, lost in the midst of nothing, without those people passing imagine that our inaction was greater than the absence of movement.

It was the end of a dream. The idealization ended there. The pain stepped us in a cascade, continuously like an electric shock that grabs us and from which we can not escape.
At that point, we merged into a deep embrace … a side from all the other people passing by, indifferent, in their haste and weariness.

My head was dipped in an unbreathable  air, which only remained active to fulfill a basic function: Clara needed feeding. Period.

Autonomously, my legs moved into any direction, just in order to find a place to feed her.
We got into a waiting room. Full of toys. There were two boys aged 6 and 7 years and a couple already in his forties, with a baby in the arms, two or three months old, waiting to be call. How that baby was physically distinct from Clara …!
I had to bite my lip to keep from breaking apart there. To swallow the sobs that took me away. I took a refuge looking Clara, without moving his eyes, trying not see the other baby.
I felt an indescribable pressure upon me. I continued to sink myself in Clara. I did not want to see anyone more. Nobody else. Where could I hide us?!?! Where was this bottomless pit in which I was, but I could not find to escape with her to a place where nothing, NOTHING could jeopardize our happiness … ?!

The entire return journey home was an atrocious suffering. Silence filled the physical space as endless thoughts crossed and trod up without law or order.
The salt from the tears that bathed my face left me thirsty. Clara slept. I also wanted to sleep. Erasing memories. Waking up in another story.
But no. That was my story. There were no mistakes.

On that day, I died.
And on that day, my life, our lives started again, from an imaginary zero.

New words, concepts, feelings, emotions.
I could not grab into anything unless to us.

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