An extract from In a Few Whiles, a non-fiction book by Caroline Lawless
Fear and anxiety festered in the small space. Although it was a cold January day, the heat enveloped me like a sauna. It was the last place in the world I wanted to be even though I had been wishing the months away to get here. My body was heavy with trepidation. It was a position I never expected to find myself in, yet here I sat. Waiting. All we seemed to do these days was wait. Waiting for someone to tell us what the next test was going to be or the result of one already taken. Waiting to see ‘how she would evolve’, as if that was supposed to put our minds at ease. Worst of all was the fear of what we were going to learn today and of what was to come. We were immersed in the unknown.
We made polite, irrelevant conversation to make the time pass. What used to be general chat between us was forced, stilted. Would we ever laugh about anything again? We were worlds apart, choking with personal anxieties but clinging to the hope that today was going to have a positive outcome. As I looked around the room the expressions on people’s faces mirrored my inner angst. The reality of what my daugher’s life was to be lay behind the door across the hall, a door made for children in a place children should never have to be.
She smiled at me, her beautiful face lighting up. Innocent and dependent, loving and cuddly, she was just a little over four months old.
Three months earlier
My ankles were magnetised to the ground as I held the white envelope in my hand. I was weighed down by sickly apprehension. The information it held could affect us all for the foreseeable future. On one hand I thought that maybe the GP was just being thorough. Surely if there was something to worry about it would have been picked up by now.
But if he wasn’t really worried about her, why had he advised bringing her to the hospital straight away? I had a horrible feeling in the pit of my stomach. There had been a few small concerns in the hospital before we were discharged. Maybe they were the signs? Had something serious been overlooked? I tried to recall every conversation I’d had with the nurses and doctors in the hospital after she was born.
The tremor. My heart thudded in my ears. Had the tremor been something that should have been investigated further? We had settled into a routine at home for the past six weeks and all the while there was something underlying that needed attention. Why had I not noticed anything different about her? I was supposed to be the one that had an instinct for this type of thing. I was her mother.
I stared at the envelope, panic rising. If I let go of my emotions now, there would be no hope of holding things together. I knew I shouldn’t but I opened it; I had the right to know. I eased it open as carefully as I could so that when I handed it to the consultant it would look untouched. Hands shaking, I scanned down the page.
Prominent Occiput.
I tried to focus on the words, something about not reaching milestones. That could be helped though, right? Lots of babies did things slower than others but eventually caught up. Then the term ‘neurological’ bounced off the page.
Nothing could have prepared me. I was so frightened I felt numb. How would I cope if my baby had something neurologically wrong with her? With my other two children I had taken everything for granted: the checks in the hospital before baby could go home; the public health nurse visit; the six week check with the GP. I never really knew why it was important that a baby should be smiling by a certain age, cooing at another.
Sadly, I was about to learn.
Caroline Lawless is mother to three and carer to her daughter (12) who has a rare genetic condition. She qualified as a Life Coach in 2023 and started her own coaching business, Ikshana Life Coaching, mainly supporting family carers.
