Jason and I had spent the past couple of hours alone with Thomas. Finally holding him in our arms and appreciating our time. He had been through so much over the past week, giving us moments of joy at the thought of finally taking him home once again, as well as bringing me to my knees in worry and despair. We had lived in a bubble with him, and whilst Jason had made trips back to Bucks, I had not even ventured outside the hospital to breathe any fresh air or feel the sun on my skin. I had stayed glued to the ward, spending time with him, expressing for him, thinking of him, and ultimately living for him. But throughout that time I had not held him in my arms once. I could barely touch his warm, soft skin for much of his time, with the wires and tubes that were keeping him alive. But that was OK. That was what he needed.
As we sat with him still connected to the ventilator, we watched him. We studied him. We felt him. We breathed him in. Trying to imprint every little detail into our memories. It was the early hours of Saturday 8 March. We were in a quiet corner of the unit, next to the window overlooking the front of the hospital, the blind was drawn and the curtain pulled round us. The staff on the unit were amazing, providing us with so much care, love and support, taking photos of us with him, as well as giving us the space and time that we needed.
When the doctor returned, we knew that this was our moment. I felt physically sick and would have done anything for us not to have been there. My heart was crushed and I was broken; shattered into pieces and beyond devastated. To have my son in my arms and to knowingly remove what was keeping him alive was such a massive wrench. It was wrong in absolutely every way. I could not get my head around it. No parent should have to watch their child die. My silent tears just continued to roll.
As the doctor very slowly and gently removed some of the equipment and took Thomas off the ventilator, I wasn't sure exactly what to expect. I had not experienced being with someone when they take their last breath and even if I had, I was puzzled as to how this worked when they are on a ventilator. He explained what he was doing and made sure we consented throughout. He showed us such compassion, as Thomas' parents, and also showed such respect to Thomas.
Once the ventilator was off, we were sat waiting for him to die, right there and then in our arms. There are no words to express my feelings at this moment. No words could possibly do this justice. The whole moment was the worst one of my life, an utter horror. One that you consider unimaginable when you have a baby, one that you dismiss from your thoughts as quickly as possible. And now we were living it, in that moment, and there was nothing we could do to change it.
His breath was weak but very much present, pausing between inhalations. We held ours, waiting for his next to come.
When we had woken that morning, we had had no idea that this would be Thomas' last day on Earth. We didn't know that when we were to lay our heads on the pillow that night that one of children would be dead. He hadn't had a chance to say his hellos to so many of our family and friends, let alone, say a goodbye forever to his own siblings. This wretched illness had shredded our lives unrecognisably.
But now we could see his beautiful face. It was marked from the elastoplast, but otherwise perfect. His long eyelashes, his button nose and plump cheeks. He reminded me so much of baby Lucy, but I could see his brother in him too. He was so peaceful and calm.
I held him up, to bring his cheek next to mine. It was soft but firm, and had a gentle warmth. How I had longed for this touch. Such an intimate touch that connects a parent with their baby. Each breath he took I could hear in my ear, it warmed my cheek and fluttered my hair. I pleaded to him not to stop and gave him encouraging words in a feeble attempt to give him the support he needed to carry on living. I begged him in a last appeal of hope "I love you, son, please don't leave me".
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