By NAMI CLARKE
This time last year I was waiting.
My daughter was to be delivered in three weeks time.
We decided on the 28th of June as the day she’d been induced because it was the longest amount of time advisable to extend the pregnancy.
We specifically didn’t want the 21st of June because that is only one day after my father-in-law’s birthday.
We didn’t want to spend every year hereafter wishing my partner Andy’s dad a happy birthday, with the anniversary of our daughter’s likely death overshadowing it.
Not that one week’s grace would have made a difference to the pain that was coming. Life as we knew it had already changed in the tiny window of time between one ultrasound and the next.
Much like my pregnancy with our first child, I’d been experiencing a completely ‘normal’ pregnancy with our daughter. So when I was informed it would be best if the head pediatrician and obstetrician interpreted my ultrasound results I was concerned but not panicked.
My husband decided to accompany me to the appointment at the last minute and we sat bored and impatient in the waiting room. We were completely and utterly unprepared for the sledgehammer that was about to hit us straight in the face.
Finally, they called my name.
Our toddler, already having eaten his way through every morsel of his lunch box, jumped up enthusiastically and marched in ahead of us. We smiled and nodded and entered the room, making the usual polite introductions.
But there weren’t just two people in the room as expected – there were three; pediatrician, obstetrician and a geneticist. “Our” geneticist.
And there was nothing in the room but two sofas, in calm, non-offensive colours, a box of tissues, a few toys to keep happy and healthy children occupied and a very pretty view. With the final introduction and the word “geneticist” swirling around in my head – my heart stopped.
Clinical terms were bandied about and watered down for our benefit. “Rare disease”, “cystic kidneys”, “irreversible”, “lung failure”. They drew diagrams and passed me the box of tissues. “We’re very sorry” they said.
I watched my toddler – robust and healthy and thankfully oblivious – as he tore the room apart. I truly did not believe a word they were saying. I felt myself getting hotter, dizzy. I looked at my husband and grabbed tightly onto his hand. He was not crying.
The specialists gave verdict was reiterated again: Autosomal Recessive Polycystic Kidney Disease.
From that moment, we waited. That was all we could do.
I stopped work immediately and somehow the rest of the world carried on happily. I tried not to question why. I tried not to Google for more information. I tried to eat, rest, and not lose my mind completely.