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.
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.
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.
We 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.
As 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 😉