Carys at 2 months old, pre-surgery. The haemangioma was to double in size over the next 2 months.
It was strange, being home with Carys after weeks spent at the hospital. That first night, we were almost at a loss as to what we should do. We just sat on the sofa, gazing at her as she lay in her moses basket. She only woke to feed, startling Conor and I all over again with the piercing stare of her ice-blue eyes.
As the boys ran around madly, pretending to be dinosaurs, I left Conor on the sofa with Carys snuggled in his arms. I went upstairs to get her cot ready, something I had overlooked in the chaos of the last few weeks.
When I came back down, Conor was slumped with his head bowed over Carys. It was only when I saw his shoulders shake, that I realized what was happening.
I had never seen my husband cry before. He was always the strong one, the positive one. Me, I was weak and watery. I wailed easily, always had. I had shed enough tears to fill an ocean since Carys had come into our lives. I stood in the doorway, humbled, aching to go to him, whilst the boys ran round and around the sofa, oblivious.
But I didn’t. I let him have his moment. If I approached, I knew he would swallow back all that emotion, and resume his iron man façade again, for me.
Watching him cry, and resisting the urge to comfort him, was one of the hardest things I have ever had to endure.
Two am and I was still awake, listening to Carys snuffling and snoring in her sleep. A beam of moonlight slid between the curtains and lit up Conor’s face where he lay as if unconscious beside me. He looked relaxed, the lines of daytime concerns eased smooth by the peace of slumber. Carys’s mop of black curls was a dark shadow against her crib’s pale bedding. She lay still, but I could hear her breathing.
It’s funny how one’s worries are always magnified out of control during the wakeful watches of night. It’s as if that dark wing sweeps aside our powers of logic and reason along with our perception of the physical world around us. Only daylight can restore our sense of perspective, and banish our worries back to whence they came.
As I lay in bed, giving way to my panic, the silhouette of my familiar wardrobe manifested itself as the monster of Carys’s syndrome; the bulk of the chest of drawers became her swollen, weak heart, the curtains my ignorance. They advanced upon me, wielding their weapons of fear and sorrow, but I held my shield steady. I knew that without a weapon, I could never destroy them, but my shield could hold them at bay as long as I stayed strong enough to lift it, for my shield was love.
I eased myself gently from beneath the quilt, trying not to disturb Conor, and pushed the curtain aside a little, so that the moonlight drifted across my sleeping baby. Bleached of colour by the night, and silvered by the moon, it was no human child which lay there, but some fragile, magical, ethereal being, a mystery just waiting to be unraveled. For some unknown reason, she had found her way to me.
I rested my hand on her, feeling her warmth travel through me. I brushed my hand gently over her tight curls, marveling at her tiny upturned nose, her full rosy lips, her pointed elfin chin. In her dreams, she was feeding; her little mouth began to make suckling movements.
Shivering, I went back to bed. Half awake, Conor reached out an arm and pulled me in close, and in that warm, safe place I finally fell asleep.
#nightterrors #worry #specialneeds #newbaby #motherhood #insomnia #cominghomewithnewbaby #cantsleep #mothering #disability #AuthorAliIsaac #lifewithaspecialneedschild #CardiofaciocutaneousSyndrome #inspiration #overwhelmingresponsibility #Carys