October 13, 2013


Worth It

We are now almost half way through October, and I have been somewhat distracted… but didn’t want the whole month to go by without acknowledging that it is, in fact, Down syndrome Awareness month.

PerfectBut I am, quite honestly, at a loss as to what to write when it comes to Down syndrome.

We love Nicholas because he is Nicholas, not because he has Down syndrome. When we look at this gorgeous boy, we see Nicholas, not Down syndrome. It is part of who he is, but doesn’t define who he is.

We love Nicholas because he is very fun, and we love watching him commando crawl all over the place and his proud-as-punch face when he pulls himself up to stand. We love hearing Nicholas say ‘star star’ and see him twinkle his fingers when he wants us to sing Twinkle Twinkle Little Star. We love his open mouth kisses on demand, the way he blows a kiss, the sound of his giggles when you kiss his neck. We think it’s kinda funny when he throws the occasional tantrum. Loving him is not in the least bit difficult and we think he is pretty amazing, for all the things he can do and in spite of all the things he can’t.

DSC_7466Perhaps, this October, I have a couple of things I would like to say…

When you see our son, I would like you to see Nicholas, not Down syndrome.  When you see any individual with Down syndrome, or any other sign or symptom that may lead you to believe that person is somehow different to you, please look beyond the stereotypes and get to know the person, rather than the diagnosis. Open your heart and mind and you may discover more than you expected. There is so much beauty in diversity.

DSC_7512We have high expectations of Nicholas. We want him to become the absolute best Nicholas he can be and we will help him achieve whatever he wants to put his mind to and give him every opportunity to do so. We don’t want the fact that he has three copies of the 21st chromosome to be an excuse or to limit him. We want you to have high expectations of Nicholas and expect amazing things from him too. However, we also accept Nicholas for who exactly who he is – and these two things, expectations and acceptance, aren’t mutually exclusive.

DSC_7463As the past month has so vividly confirmed for us, there are no guarantees in life. When we chose to keep the baby who grew in my belly despite not having the typical number of chromosomes, there were no guarantees that he, or any of his brothers, would be healthy and safe forevermore. We took a chance. We took a deep breath and decided that his life, whether long or short, whether healthy or fraught with illness, was worth the heartache and the joys yet to come – not because we really wanted to at the time, but because we knew in our hearts it was the right thing to do. Because we’re his parents, and that’s what parents do – we face heartache, we go on. And for every day that I am able to hear Nicholas’ giggle and say “Mum mum mum”, every day that I am blessed to be called his mother, I count my lucky stars.

Because he is worth every moment.

PS. I did contemplate doing the 31 for 21 blog hop this year, but then life kinda got in the way… and also the thought of divorce didn’t really appeal to me 😉 But there are many great voices out there sharing their thoughts on DS Awareness, so go and have a read, leave a comment, share the love x

PPS. These photos were taken a few months ago, but I love them. So consider them ‘previously unseen footage’, even if we’re a little out of chronological order 😉


I am so grateful for your thoughts and comments, so please reply below.

  1. These photos! They’re always good on Mummalove but these show so much of who Nicholas is. And, as always, your words are wise and gracious and inspiring. How different would the world be if every child was as loved, cherished and supported by their parents as Nicholas is!

    1. I had wanted to use these photos for a while, so I’m glad I worked out a way to make it work. Thank you for your unwavering wisdom, grace and inspiration in my life too x

  2. To love and to be loved is really all any of us need in this life. I feel you are doing your share as well as loads for those who don’t know what love is or how to love. What wonderful gifts you are to us all.

  3. Annie, your beautiful family is inspirational. As someone who often has to deliver the news about a baby affected by Downs, you make me realise how much more you can gain by an extra chromosome. Hope Sam makes a speedy recovery. Looking forward to the updates from Megan and your blog. Keep blogging, you are such an amazing writer.

    1. Thank you for your lovely comment – it honestly made my day. I’m not against prenatal testing at all, but I am very passionate about health professionals being able to offer parents unbiased support in such a critical time. From all the parents I now know in the T21 community, this is something I hear time and time again – so many of them had such terrible diagnosis experiences, but still wouldn’t trade places for a second to be parents of the child they now know and love. Thank you for the lives you touch x

  4. I so needed to read your words tonight. I can’t tell you what your post meant to me about your pregnancy and what you went through, you put it into words for both of us. Knowing you’re out there and writing is so lovely. Two days to go to open heart surgery for our beautiful boy Timothy – time is standing still, and yes, there are no guarantees for our children. God Bless, your biggest fan in San Diego, CA. -Julia

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