Then and Now.. What will my child with Down syndrome look like?

I often find myself writing for new parents of children with Down syndrome and this post is no exception.

Even though my main audience will always be those outside the Down syndrome community, to provide a snapshot of what life is like for one parent of a child with additional needs, I am always drawn back to showing those yet to begin their journey a little of the intense joy they have in store for them.

This resonates strongly with me, as I found myself in a place where I didn’t know my up from down, or a nasal cannula from a foot probe, and I scoured the internet frantically for any new information (AND PICTURES) which would bring me some release from the many fears I had for my son’s future.

 

I had my own list of fears to work through.

How would he sound? Would he be able to speak properly, or talk at all? Open and fluent communication is a hugely important part of my life, and my family’s. Relieved, I spent many hours on YouTube watching videos of young adults giving talks, lectures, speeches and hanging chatting with their friends.

Would he have friends? A social circle, a community? Would he be dependent on me dragging him from one organized activity to another? Do adults with Down syndrome truly have jobs and get married, or were they just the one in a million stories touted to idealise people with this disability?

What would he LOOK like? Would he look like me, or even his older sister? Would he look like an Abianac, or would he just always be another kid with Down syndrome?

I spent many hours staring at my newborn, trying to spot features, to see how ‘strong’ or ‘mild’ they were, and to decide what his toddler, child, and adult face would look like. Slow the features blurred together and I could no longer see the ‘Down syndrome’ unless he smiled from ear to ear, or tilted his head to one side and stared at me, very still.

In all those hours I spent staring and imagining what my son would look like, I never suspected the truth of what I would have in front of me, 19 months down this road.

I have a little boy who smiles. He laughs, he plays, covers his ears when he’s frightened, laughs out loud when his sister does, even when she’s in another room. He sits on the mat at reading time in his nursery, and cuddles his teachers like they’re his extra much-loved mummies.

I have a little boy who is an Abianac through and through. He will always be more a part of his family than he will be a collection of symptoms. He is so, so much more than that. My little boy has perfect tiny ears, a hilarious speed-crawl, a habit of knocking the rubbish bin over, and gives me long goobery kisses sweeter than I’ve ever had.

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He even looks a little like his sister at the same age.

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But above and beyond all of that.. He is his own person. He is not just an Abianac, or ‘Kat’s son’. He will never just be ‘that kid with Down syndrome.’ He is Parker Myles Abianac, and the only person he will ever be is Parker. His own, individual, unique perfect little self. Just like everybody else. 😉

2014-08-11 21.04.10

7 comments
ebi - May 31, 2015

Hi! First of all i like your Posts ! Second my uncle has also the syndrome of down hes now 51 years ! He loved with my mom cuz he lost his mother and his father is in a retire home oe somerhing like that . My mom also had a daughter with that same syndrome but she had a very weak heart . ITS NOT easy but the love you get from them is Much more ! So i grew up with 2 people having that syndrome so i know that iTS sometimes hard wish you and your children all the best !

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Liz A - November 15, 2014

been through the same thing when my son was born. I scoured the internet for information until my brain hurts. Now, when I look at my 14 month old son, I see the love of my life, not a kid with down syndrome. he is my heart and soul and nothing will change that, extra chromosome or not.. thanks for sharing your story 😀

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Teresa - September 4, 2014

My opinion he will look very beautiful in his own way. Being always his own person with awesome qualities. GOD has blessed you with an ANGEL.

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Melanie - September 3, 2014

Loved this post!! Glad to know I am not alone in the way I think and feel! Thanks for sharing…

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lherren1963 - September 1, 2014

Reblogged this on Flibbertigibbet Scribbles.

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yvette - September 1, 2014

Not just a little, he looks soooo much like Lolly.

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