So here’s the ‘boring’ bit, our story. When I started the blog I kind of assumed, that the only people to read it, would be my friends who already knew me (and who kindly humour my rants). I see that’s actually not the case – so “Hi, people I don’t know”
What’s to tell? Ummm…Evie is 6 years old. Currently dual placement arrangement at our local mainstream and special schools. She’s incredibly funny, grumpy, chocolate and cake obsessed and even more stubborn than her dad (if that is possible).
We found out that Evie had Down’s syndrome the day after she was born. Her pregnancy was unremarkable. Textbook even. Arrived on her due date weighing 8lb 1oz. We had no clue. No idea that there was anything different. To us we had just been given the most beautiful daughter. We had become a family of 3. I have never felt such an overwhelming rush of love as I did that day. The best feeling ever.
The following day came a suggestion that all was not as we thought. That something was ‘wrong’ with our perfect baby. We were rushed for urgent testing – heart scans and bloods. All the while the world was still turning, yet our’s had stopped. I went straight into denial mode. This couldn’t be happening to us. This happened to other people. All I could see when I gazed at her, was a mini me. I saw no ‘difference’. After some days the diagnosis was confirmed and we were sent home. No advice. No support. No leaflets even. Just a list of appointments to attend.
We were in shock. Evie was beautiful. We were so in love with her, yet we feared what ‘others’ would think. That first night at home we began to research. We sent emails to people to tell them our news. It felt like the coward’s way. To hide behind a keyboard – emotionally protecting ourselves (yes, I am blogging and I do see the irony!).
Those emails began, “This is without doubt the hardest email that we’ve ever had to write.” I find it terribly sad that we wrote that. We had no idea of the absolute joy that Evie would bring. It’s not that we didn’t adore her but we were frightened of what the future would hold for her and for us. She has saved us in so many ways.
Having your child diagnosed with a disability is like a grieving process….bear with me, I’m not being flippant. You go through the stages of grief; denial, anger and eventual acceptance. You grieve for the child that you imagined. The blonde haired, green eyed girl (note Evie has brown hair and deep brown eyes) who would be an avid reader and love sports. I realised after a time, that no child is ever as we imagine. With a disability or not. They are themselves and will never be that picture perfect version that we conjure up.
I didn’t see myself as going through a grieving process. I have only recognised it as such, after going through the grieving process for our son Joshua. He was stillborn when Evie was 3 years old. Evie was our saviour then. She gave us a reason to live, to get up in the morning, to laugh. And she does like to laugh (and growl, shout and talk A LOT!). I think it takes a long time to come to terms with a diagnosis, whatever that may be.
Sometimes it hits you, perhaps when you realise that all of their peers are talking and she can only just sit up. When her peers are practising beautiful handwriting and she can barely hold a pencil. Just because I recognise the differences between Evie and her peers, doesn’t mean that I resent them or her. She’s just herself. She does things that they can’t do. She is the most flexible child I have ever seen. She gives far better hugs than anyone I have ever known. She can see into your very soul and pick up on tiny nuances, that you didn’t even realise were there.
But when she does achieve, good grief….it’s such a rush!! I saw her this week, swim two strokes independently (no floats!). No big thing you’re thinking? Hell yes it is! She actually moved her arms willingly, saying “stretch and pull, stretch and pull”. I had to restrain myself from jumping up and down and cheering…..we did high 5 later!
Down’s Syndrome Awareness Week and World Down’s Syndrome Day is all about celebrating people with Down’s syndrome and their achievements. Those achievements don’t have to be massive. It’s about the world accepting people with Down’s Syndrome, not pitying, side-lining or tolerating them but fully including them. That doesn’t mean just at school but in all walks of life. We don’t all have to be the best at everything.
Sometimes the smallest steps, mean the most. Join us on Saturday, wear your funkiest and brightest socks. Get people talking about WDSD15! Oh and show me your socks too! Can’t wait to see the sock selfies!