I spent the first year of my son’s life finding my voice for him. I was a new mum, I was getting used to all the major life changes a new baby brings and I was also working on finding my voice. Of course I did not know this at the time, I was in the baby fog, but looking back I can see the numerous visits to GPs, and a surgeon who had the bedside manner of a goat!
I can’t tell you how many times I was told ‘you should be glad he has a hand’! I am a very positive person, I was very glad he had a hand, but he is my newborn, he was born with a smaller hand and his fingers are joined together and I don’t know what the right thing to do is, but I know what you are telling me is not right for my son. This is what I should have screamed at them, but I could not do this until I found my child’s voice.
I complained about our surgeon, I wasn’t happy with the way he spoke to us, I wasn’t satisfied with the options he gave us, the hospitals answer was to give me another appointment with the same surgeon, nothing changed.
I used this anger and I picked up the phone to the Poland Syndrome Support Group (PSSG) and found out there are less invasive options for surgery and there are surgeons who are compassionate and respond to a parents concerns, wants and needs for their child.
So I told our surgeon NO, we won’t be going with your options, we found another surgeon and he was the best thing that happened to us. He did my sons surgery without a skin graft and he was just lovely and made the whole experience as worry free as possible.
From that moment on I knew I would always be my son’s voice and I would not accept anything less than what we want and need for him. Whether it be an x-ray or physiotherapy I am always ready to stand up for my son and be his voice. You do not have to be rude to medical staff and if you are lucky, they will understand your voice, but if they do not listen, you need to make your child’s voice louder.
It was hard for me to find that voice, but once I had found it, it roared for my child.