“I don’t know how you do it” a friend comments as we pack up our equipment and get in the car. My son has Down Syndrome, congenital heart disease amongst other complex health needs which can make life at events very difficult. I laugh the comment off “Oh you get used to it”, but on my way home after a particularly painful event where almost everything has gone wrong, I do think to myself, should I be doing this? Is this crazy?
But it is important to make the effort. We can’t hide away in the depths of despair, wallowing in self-pity when we have a difficulty thrust upon us. It fuels negativity in ourselves, and it says to the world – why would you knowingly accept a baby into this world with a disability?
I know it’s not a popular thought, but it’s actually OK to have a child with a disability. Sure, it might have a few more complications than the average family, but we have a great life…a more than great life! We have a wonderful life. In fact, it’s a life that’s not all that different to what it was before.
My husband and I still laugh at each other. We still share a wine, tell stories about our day and connect just like we used to. I still find absolute delight in my eldest daughters’ quirky traits. I still love being silly with her and roll around in tickle wars when it’s just us at home.
I still cuddle my newborn and whisper soft lullabies in his ear. I still nuzzle my nose into his neck and enjoy the softness of his skin. My heart still fills with pride when his face lights up with that big frog mouth smile or when he achieves something new.
I still utterly enjoy decorating the house for Christmas or planning the next dinner party we will host. I still get excited imagining the next time we will look at that little double line on a pregnancy test. I still cherish sitting for hours with my best friend engaged in the best heart to hearts.
And so, amongst the difficulties, we still have all these joys. In fact – I really haven’t had to sacrifice anything good at all.
It’s OK to be given a harder life that what you imagined, because all the best parts are still there – and that is the point. The extra effort to get to events is worth it, because I do still enjoy myself and its important to show the world that raising my son with a disability is OK! Its more than OK – It’s still the most wonderful life!
To read our introduction and background story of our son and life with Down Syndrome, click here
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