For the last time, I sat in a hot and stuffy hospital ward, beside an empty cot, counting down the minutes until Big Bro would be out of surgery. It was his final piece of surgery – an operation that would reverse his stoma and enable him to poop as nature intended. Eight months. Eight long months, my baby’s waste had been collected in a tiny little bag, stuck to his abdomen with adhesive that made his skin red and sore, but no more. No, now we would finally get a chance at life without hospitals and anaesthetics, incisions, pain and the long process of healing.
With one exception that is. We would be going it alone.
You see I sat in that ward alone. In fact, I slept by that cot for four days, alone, with no-one to keep watch while I grabbed a coffee, or something to eat. No moral, emotional or physical support. Just me and Big Bro because two weeks previously, his father had walked out on us and moved as far away from us as he could possibly get – to the other end of the country no less.
I guess the pressure of having a sick child is too much for some, but I thought that he would be there, at least for this significant event. After this last piece of surgery, we would have been free to move on with our lives – to actually enjoy life and plan ahead. But no, he left us to our fate and hasn’t seen his son since.
With or without him, I sat by that cot. When Big Bro came out of recovery, I held him and watched him, loved him and cared for him. The nurses on our ward were wonderful and really couldn’t be faulted. I remember waking one morning to the panic of seeing an empty cot, only to find my baby being bounced upon the knee of a nurse, who sat behind her station, was amusing him by tickling him behind his knees. The sound of his chuckling, was music to my ears – a music that drifted through the ward, spreading a sense of youthful hope and joy to those who heard it. And it was at that moment that I realised that yes, we would be fine.
Since then, Big Bro has grown to be a happy, healthy, three year old boy. Despite the complications that he was born with, he is able to eat normally, although his stomach is smaller than children of a similar age. He can also, with the help of suppositories rid his body of waste although he has very little control or sensation over his bowel movements, he is now potty trained and no different from his peers at nursery. He is bright, intelligent child and I have no doubt that he will go on to be a wonderful young man.
So this is the end of this chapter in Big Bro’s life. It’s taken a while for me to get it down on the page, but I’m glad that I did because I now have a record to show and explain to him what happened. However it also paves the way for me to document Big Bro’s future, whatever that may be and I hope that you will join me in the experience.
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Amazing to see how far Big Bro has come in the last three years! And great you have shared this too. It will be so comforting for parents with babies going through this to know that things will improve x
I sincerely hope so! I remember when we first got hit with the diagnosis, we had no-one to turn to and had no idea on how things would turn out. So, if this helps even just one person, it will be well worth it!
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