So the 21st of March is World Downs Syndrome Day.
Again, in keeping with my non-biological previous blog post, I instead want to speak about a very special person.
My friend, Sammi, and her husband, Bruce, have the sweetest little girl, Eva-Mae, who is the joy and spark in their lives, their first born daughter, with the most exquisite blue eyes, and bright blonde hair, and chubby little fingers and toes, and the best little grin, and, oh, she happens to have Downs Syndrome.
I had a great chat with Sam about her journey thus far. I think, in some ways our journeys are similar, and in others so different. But there are a few things that really stood out for me: firstly, the fact that first and foremost, Eva-Mae is their daughter. That trumps every other issue, or non-issue for that matter. When you look through those lenses, it changes things. Before you have a child with a disability, or a “challenge”, or a “disorder” or whatever your presiding worldly issue or “error” is, all you can think about is the PROBLEM. You become so focused, perhaps even fixated, on what is WRONG, that you cannot possibly believe anything could be right. But when it’s your child, well, the “wrong” is just another attribute. Like having blue eyes, instead of brown. Or blonde hair, instead of black.
And then you tend to focus on all the things you’ll have to do to help them cope with their challenges… like OT and PT and speech therapy. But as Sam put it: that’s just a thing you do, like sending your child to extra maths lessons, or study lessons. It’s the same thing. Just different.
The other thing that really stood out for me, was when Sam told me how, before Eva was born, she was trawling through plenty of websites of families with children with varying disabilities, and something that people said OFTEN was “How I wish my child had Down Syndrome”. There are so many parents dealing with some very serious conditions with their kiddos. I look at my Miks, and I think that in some respects, her prognosis was a death sentence. And then there are parents whose children will never walk. Or never talk. Or who cannot see. Or all three. Some issues are HUGE. Way bigger than my story, way bigger than Sammi’s. But isn’t that the truth of it all: there’s always someone with a smaller problem, always someone with a bigger problem. How can we qualify a life based on how big or small a problem is? We qualify a life relative to what? To who? Frankly, I’d rather not have that responsibility.
When Sammi and Bruce see Eva-Mae, and probably when all their friends and family see Eva-Mae, they don’t see a prognosis, or a diagnosis. They see a little girl. Family. Light. Love. Joy. Sam said that the last thing she wants is PITY. How could you pity the amount of joy Eva-Mae has given, and continues to give them? How could you pity the growth of their family? How could you pity the love a child brings into a family? How could you pity celebrating all her achievements, and cuteness?
We were at a babyshower recently, and Eva-Mae has started clapping of late. It’s the cutest, most sincere and most energetic clap you’ve ever seen!! Too cute!! So anyway, Eva was chillaxing, checking everyone out, and a little boy, of about one, was standing next to her. The little boys mum left the room, and so he let out a big cry. Well, Eva looked up at him, with the biggest eyes, and started clapping, as if to say: “Don’t cry, just be happy”. It was the funniest funniest little moment. The thing about Eva, is that seeing that character, and little face, well, you just wanna get closer. She’s too much of cute!
I just wanna celebrate Sammi and Bruce and Eva on this 3-21 day. Because they have done something very special, and yet quite ordinary: they have chosen to love. They have chosen to live life to the full, and to honour and shine God’s light in the process. We get a glimpse of that unconditional love that God gives to us.
Altogether ordinary, and altogether unbelievable. But He loved us first. We’re only to extend that which He’s already given freely. And to do so without consequence or without expectation, and in the process receive the greatest gift imaginable: life.
And in Sammi’s words:
“My little Eva Bug. One thing that stands out for me is how PROUD I am of her. I LOVE showing her off and one of Eva-Mae’s greatest qualities is making friends with strangers…She’s challenged me quite a bit here as I like to be in and out of the shops as quick as possible with no chit chat (especially to people I don’t know), but my Eva Bug has taught me to slow down sometimes. How?
Quite simple really, she smiles. Great big toothy grins.
I’ll look down at her perched in the trolley as I’m zooting down an isle and she’ll be staring straight past me and beaming. When I turn around to see what it is, I’m generally met with another great big (now slightly embarrassed) smile on the face of an adult I don’t know. And then a conversation starts. And another person falls in love with my daughter.
She’s clever like that.”