Here's a blog post from my heart on Down Syndrome Awareness day. I dont often talk about my family, or indeed Rose, who was the inspiration behind the Shnuggle Basket...
Down Syndrome is a funny one, so many of us don't know much about it. We have all seen or met people who have Down Syndrome, but rarely are we equipped emotionally to deal with it. So we ignore it.
Worse, we ignore the people that have it.
It's not malicious, or evil, or mean. It's just not understanding. It's not our fault - who tells us about it, educates us about the implications of having it, and how it affects the lives of the people who have it.
I was the same. I was ignorant. I didn't know about it. It didn't affect me, so I just politely ignored people or smiled nervously as they went about their business.
Unitl the 5th May 2009.
The day that our beautiful Daughter Rose came into the world. All bright red and rosy cheeked. But quiet and a a bit limp. But happy and hungry. And strong.
Something's not right, Sinead said, looking lovingly at our new daughter. The midwives looking uncertainly at us and our new baby. No I said - she's just a bit squished - She's fine.
But I was wrong. Sinead was right (as she usually is) something was not right. It turns out it was an extra chomosome.
As we digested the idea that we, a fit and healthy young couple in our twenties, had given birth to a child with a disability, we cried. A lot. What did we know about Down Syndrome? Nothing.
After several visits from Paediatricians it was confirmed that they did think Rose had Down Syndrome. And they wanted to do a test. They wanted to stick a big needle into our baby and draw blood. It seemed so wrong, but it had to be done.
It was a bank holiday weekend, so we waited in the hospital for 3 days before we got the results. Then it was confirmed, Rose had DS.
She had some various other complications too, but thats another story, but after a week in PICU at the Fantastic Royal Hospital in Belfast, and while we were in the Childrens Cancer ward undergoing mild dose Chemotherapy we had another call from the genetics lab.
"Good news" they said. "Rose has a rare variation on DS. It's called Mosaic Down Syndrome."
Which meant that some of Rose's cells had an extra chromosome and some of them didn't and were 'normal' In a nutshell, this means that her condition is generally less severe that full DS, but that the extent of the affected cells is impossible to know.
We are now almost 6 years on from that fateful day, and boy has it been eventful!
We have been lucky in that Rose's health has been very good. No long term complications. She wears quite strong glasses, and her hearing is not 100% but she is so happy, and friendly and mischievous. In fact she is a normal little girl. She just has a few extra chromosomes hidden throughout her body.
We took a vow that the only restrictioctions we would put on Rose, were the ones that would be a risk to her health or her safety. We have raised her as any child would be raised. She gets told off when she is naughty, and praised when she is good.
She strops when she is not happy, and sings (a lot) when she is. She goes to a mainstream school and she is around the middle of her class in ability. She has the neatest writing in her class. She reads at Key Stage 4 (almost Stage 5) and she is only just turning 6.
Sometimes she doesn't hear, and sometimes she doesn't listen. She is harder work that a 'normal' child. But so what!
She is the most popular girl in her class, and possibly the school.
There are days we ask "why us", but we love our Rose (and her Brother Liam) more than anything in the world!
So, if you can take one thing from our story, it's that people that have down syndrom are still people. They have a condition which means they are a bit different. But they still love, and care, and have feelings, and are naughty, and nice. And have dreams and ambitions.
So next time you see someone who has down syndrome dont treat them specially, but dont treat them differently. Treat them like you would any other person. Say Hi, Smile and maybe make a new friend!
Thanks for reading
Adam (& Sinead & Rose 7 Liam)
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