Our son as you know has XQ28 Duplicated Syndrome which is a rare chromosomal abnormality. At birth, our son was in Neo-natal for his low birth weight, temperature and sugars. During his time in neo-natal, they noticed that his head conference was small. Cut a long story short, this led to the diagnosis of his XQ28 Duplicated Syndrome.
Since then, we have had a meeting every year with a genetic specialist which supposedly is someone for parents to talk to and feel comfortable sharing their experiences and feelings with.
As mentioned in my last blog, in our first meeting we were told that our son will never be able to sit, crawl, walk and talk. Our son proved doctors wrong and has overcome every milestone to date. We have had quite a few obstacles along the way but that’s what makes our life so interesting! Apart from that we have a happy and healthy growing 3 year old.
Our previous appointment, which was a few months ago, was what really left us speechless. I had so many amazing things to tell the specialist about how much he has already achieved but the specialist didn’t show any sort of interest. He didn’t look at him. He didn’t play with him. He didn’t even ask how he was doing.
The first thing the specialist said was:
“I gather you don’t want another child like Joshua, so I suggest you have no more children. If you do fall pregnant, I will make sure you are able to have an abortion immediately.”
I remember just staring for about 10 minutes in pure devastation at what just come out of his mouth. Not only had our son been rejected from a childminder for having ‘too much challenging needs’ but our own specialist was not even accepting.
Firstly, what exactly does he mean ‘Like Joshua’? If he is referring to the XQ28 then that is just a small part of what he is about. It doesn’t define who he is. His personality is so much more than that. He is loving, compassionate and hilarious. We get the privilege to see these special traits every single day!
I only had one thing to say to that specialist and that was:
“I wish I could tell you it was nice to meet you, but I would be lying. No need to book another appointment in because we won’t be seeing you again. You should be ashamed of yourself”.
I decided from that moment, that we most certainly do not need any appointments that are going to judge our son on what he can and can’t do. We are going to celebrate all the things he can do and nothing else matters. Our society needs to start understanding that every child is different that’s what makes us unique. Wouldn’t it be boring if all of us were the same?
I have been deliberating for weeks now about posting this because I didn’t know whether I felt embarrassed or ashamed. The truth is, I actually feel proud. I feel proud that our son is unique. And I most certainly would be delighted if I had another child like him. Perfect is a very strong word. And that’s exactly the word I am going to use. Our son is perfect.