Today, I wanted to share a post about a photo that holds particular significance, from the time when Thomas was taken off the ventilator, 19 days ago...
Thomas was ten days old. A few hours earlier we had been taken to a room where they broke the devastating news to us that the brain damage that Thomas had suffered had extended and was now covering most of his brain. There was nothing more they could do for him and they sought our permission to remove the ventilation he was receiving. We had been told that he would be unable to survive without the ventilator and we braced ourselves to watch our son die right in front of our eyes.
The previous week had been really tough, watching the medics care for our baby and do everything they could to help him fight these nasty little bugs causing him so much trauma. A few days earlier, we had prepared ourselves to bring Thomas home with partial brain damage and had spent time trying to process the information we had been given by the doctors, trying to understand what this meant for us all. How severe would the cerebral palsy be, how much suffering would he have through his life and how would this impact family life. We had not been prepared to hear further bad news - we had no idea that there was the potential for the brain damage to get worse.
In Southampton we had been living in a bubble away from the outside world - away from our family and other children, away from our friends who were so desperate to meet our new baby and away from the hustle and bustle of everyday life. It felt as if someone had pressed the pause button on our lives.
There was the sheer disbelief that we were really there and the events were really happening - we were about to wake from our nightmare to find ourselves back at home, the children sound asleep in their beds and Thomas laying next to me in the moses basket. That moment never came.
Before the doctor removed the ventilator we had been allowed to hold him. This had been the first time since the ambulance had arrived to transfer him to Stoke Mandeville hospital a week ago. Finally, we were able to feel his weight in our arms, the warmth of his skin and the softness of his hair once again.
The ventilator was removed and we held our breath waiting for his to stop. We were finally able to see his face. His little nose, top lip and cheeks had been buried under the elastoplast for far too long. We studied his perfectly formed features, unable to comprehend why we were there. Although we had heard perfectly well what the doctors had told us, I found it so hard to tally it to what I was seeing. Here was our son looking just the same as he had when he arrived in this world two weeks ago. How could he be leaving us now when his brother and sister still hadn't said goodbye? In fact he still hadn't had the chance to say hello to so many family and friends. It just wasn't right and I think secretly Thomas knew that too.
In this photo we had hit rock bottom and felt broken inside. This photo captures the worst moment in my life. The pain was (and still is) immeasurable. It completely numbs me, brings me to my knees and suffocates me.
Yet there is something about this photo that makes me want to stare at it. Maybe it is the pride that I hold in Thomas as this is the moment he stuck two fingers up at his brain damage and fought for his every breath until the sun rose in the morning. This was his turning point for us to start the next chapter of his life. For us to return as a family of five and for him to say his hellos and goodbyes.
Above this, this photo oozes love. Not only does it capture the raw love that we felt for our son, it also captures our love for each other and how we are in this together. Jason and I shared Thomas' entire journey - the highs and the lows and this has only brought us closer as a couple. This is who we are, what our family stands for and it is because of Thomas we have this. His legacy lives on.
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