It’s World Down’s Syndrome Day. There’s a lot I want to say but I don’t know how. I’m not often opinionated on this blog, but bear with me just for today. If you disagree with me, allow me the madness of a mother who loves her eldest boy.
Mikey’s life is tough. He worked hard to sit, to crawl to walk. The stuff we take for granted, Mikey has to scrap and fight for. Every new step is a mile.
Mikey can’t talk, Mikey can’t use a knife and fork, Mikey can’t tell me when he needs a wee. Mikey gets tired fast and runs into roads without fear. Mikey has the tantrums of a two year old with the power of a five year old’s body.
Mikey gets stared at. He makes days out with the family near-impossible. We don’t do holidays.
I sometimes wonder if he and I will ever have a chat. I sometimes wish I didn’t have to change his nappies. I sometimes feel sad that we can’t manage a family trip to see my parents.
Maybe all these are the reasons that 94% of people, when told they may be having a child with DS, decide they just can’t do it.
I get it. Why choose that? Why do it if there’s an option not to? Why make life harder?
We chose it. Actually made up our minds and decided.
We chose this life.
The truth is that every fight, every nappy, every tantrum, every stare, every disastrous outing, every invite turned down is outweighed a thousandfold by the complete and utter joy and wonder of having Mikey.
Every milestone is met with whoops and cheers. When Mikey tastes a food for the first time I cry with pleasure. When Mikey signs his desires or makes a joke, it’s the greatest thing you have ever seen. When Mikey enjoys a day where all you’ve done is drive round for a couple of hours, play football in the garden and watch In The Night Garden – that’s as great as a holiday. Mikey’s got one of the best smiles and laughs ever and his enjoyment of life is beautiful to see.
But that’s not it. It’s not about balancing the scales. It’s not about getting enough joy to make up for the hard stuff.
Mikey isn’t valuable because of the good stuff he gives us, the nice feelings and the laughs. He’s not valuable because of what he’s achieved, wonderful as those things are. Mikey is valuable because he is a human being, made by our good God and therefore he is precious.
On World Down’s Syndrome Day I want to make it clear that we are poorer when we refuse to allow people with Down’s Syndrome the chance at life. I want to say that Mikey is as important as Dan and Jemima. I want to share my longing that we would stop seeing pre-natal testing as a cure. I want to show you Mikey and dare to ask you to adopt. Choose this life. Because his life matters.
Just beautiful xxx
I just read this through a link on a friend’s page and am crying tears! What a beautiful piece of writing about a truly beautiful little boy. I thank God for you, your boy and your love. xxx
Just Stunning…I couldn’t have said it better myself…he is truly a precious gift from God xx
So wonderful to read, Alice. Thanks for writing it. xc
This is powerful and beautiful!! I love it–thank you for saying so eloquently what we all want to say or should I say shout from the rooftops!!
lovely Alice… you made me cry, you are such a special lovely lady with a wonderful family
Thank you lovely girl x
Every child is God’s gift to us if only the world could see that. Thank you for all you do to help us all to understand that a little bit better. xxx
Amazing Alice, a really lovely tribute. I think Mikey is just great but I can’t imagine doing all the difficult things you’ve mentioned it must SO hard work. Thank you God for giving you Mikey and thank you God for giving you the strength and patience to look after him. he truly is a valuable gift from God
Saw this on Claire G’s FB page. It’s brilliant! I totally agree especially as our daughter has a rare chromosomal disorder and has learning difficulties and some physical disabilities. Her disabilities at the moment aren’t severe but moderate..she is an absolute joy and blessing to us…..Oh yes …and she’s adopted too!
I agree – the world is a poorer place for fewer people like Mikey in it, even if less challenging. (saw link via your dad on fb)
This is fabulous, WHat wonderful parents you are, I know grandad so can see whare you get your compassion as he is wonderful and I feel blessed to know him. I support you whole heartedly we were told our Daughter was going to be born with downs syndrome we too ignored the dr’s advice on termination, no way we wanted her no matter what. She was born 16th June 1994 lost too much wieght at birth was a bad feeder, but hey they then said she wasnt downs syndrome they had made a mistake. It would never had made any difference but hey how many people have ended a life on false information.
Mikey is wonderful and lucky to have such a fab family
My sister is special too. When she was born my Grandfather said she would be a blessing, she is now 37 and certainly has been a blessing in countless ways to so many people. I met Mikey at Sally’s 30th and he too is a joy and a blessing.
This is extremely moving. My late Mother-in-law’s second child, Richard, had Down’s Syndrome. I can picture her in heaven agreeing with everything you’ve said. I wish she had had someone as positive and enlightened as you Alice when she was at the same stage of life.
We have 2 children with learning disabilities our son has profound and severe learning disabilities including autism and our daughter has Downs Syndrome and I would echo everything you have said
me again!!! We seem to have quite a bit in common. We adopted both our children. Steven who is the most severely disabled came to us and 2 yrs 9 months it then took us almost 18 months after that to get the adoption order through. He’s 16 now and have lots of decisions to make over the next few years about his future. Natalie, who has Downs Syndrome was 10 months old when she came to us. Getting her adoption through was much easier! She’s 10 yrs old now. Spend a few yrs in main stream school where she did well but was getting further behind her peer. She’s now in a school for children with mild learning disabilities where she is thriving. Thanks for this site
Alice, this really moved me. Beautifull and honest, salt and light xxx