Facebook delivered me a very special memory this morning and one that has inspired me to write this post. The memory came from a collection of happy photos from 2014.
In my posts so far I have frequently mentioned that we know people who have Down Syndrome and how that contributed to us not being scared or fearful of our baby having Down Syndrome. Arthur-boy, now a (mainly) happy and (very) active 10 year old, who loves singing and playing the drums, is someone Glenn and I spent quite a bit of time with when he was a baby and toddler.
I’d grown up with his family in a small village, and Arthur had come to our wedding the year before and was, at least from where we were sitting, impeccably behaved and charming. I mean, he ran round their table rather a lot and sat on the table, but who wants or expects a kid of nearly three years old to sit still throughout the speeches anyway?
Arthur was born 6 weeks prematurely in January 2011. He was a very hard-fought for baby by the time he arrived. The chance of him having Down Syndrome was low, so his postnatal diagnosis came as a bit of a shock. But I don’t recall it flooring his family, and I remember that they just cracked on and raised a very smiley and mostly happy little boy who as a baby was the easiest of their three. He is now nearly 10 and very much looks like his uncles on his dad’s side whom I grew up with all those many moons ago. Arthur has 2 younger siblings and I think in their own way, all give their parents a run for their money. They are all full of life and fun and as far as I understand, create rather a lot of noise and glorious mayhem.
His mum and dad (Sarah and Dean) make no secret of the fact that having children has been tough at times and part of that has been made more challenging by having a kid with additional needs. Sarah posts candidly and lovingly about her life with ‘Thing 1, 2, and 3’ on her Facebook page, and even with this sometimes brutally honest account of their life at my fingertips, I didn’t have any worries about having a child with Down Syndrome.
I’m aware that until recently Arthur was mainly non-verbal and consequently frustrated that he couldn’t get himself understood (although Makaton did help at times). He used to caste (throw things, hard) and still is quick to scream if he doesn’t like something, or is frustrated.
When we found out that Frida had a high chance of having Down Syndrome I knew of the struggles that his parents have faced when it comes to getting the right support at school and teaching him to communicate. I knew what a nightmare the forms that go with disability are to complete. I knew it might be tough at times. But still, I wasn’t worried.
Why? Because of Arthur. Because I know him and know that he is easy to love. I remember falling in love with him when he was a baby and I fall further when I see videos of him dressed up as Michael Jackson singing and dancing along, microphone in hand, to his favorite tunes. I feel pride and joy when I see him play the drums and when I learnt how his relationship with his siblings has grown even stronger over lockdown.
And because, like Arthur’s family, I knew we could meet any challenges. Parenting is difficult whichever way you look at it, and challenges are par for the course.
I know that his family wouldn’t change him for the world. Ok, there might be bits that they could do without, but I could do without my four year old telling me I’m not her best friend anymore or jumping over Frida despite telling her not to. I don’t want to change her, I could just do without just some of the things she does (can’t we all?) That’s the same. When I showed Sarah this before posting she said:
“I wouldn’t change a single incy wincy bit of Arthur boy for us at all, I would change things for him to simply ease his frustrations. He must give himself a headache sometimes.”
She also said:
“Sometimes in life you need to be reminded just how wonderful life is and tonight you’ve done this for me.”
It sometimes does take standing back and looking at what you’ve got to realise what joy you have in front of you. So far, with Frida, that joy is right bang in front of us, smiling and giggling and charming her way very firmly into everything we do. I couldn’t imagine a world without her now.
So, I want to say thank you to Arthur and his family for being part of our life, and being an important part of Frida’s journey. We can’t wait to be able to get together and make more special memories like those I was reminded of from seeing these photos this morning.
This post and the photos are shared with consent from Arthur's parents.