So much to learn….from Seb

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additional needs, disability, down syndrome, down's syndrome, equality, family, inclusion, motherhood, pre natal, pregnancy, special needs, Uncategorized

We have just returned from our summer holiday. It has been a lovely break for us all, no schedules to follow, days of simple pleasures – swimming, reading, playing cards, chatting, eating and relaxing.

Whilst we undoubtedly were able to relax a lot, lot more than when at home, (we have visited the resort many times, we know it well and it is very safe and enclosed and a day spent at the pool there is as easy as it will ever get with Seb), some things remained the same……..

Seb is so sociable and it was not uncommon for him to wander off and join a random family by the pool. He was always well received, people of all ages. He thought nothing of plonking his (often wet) bottom on a stranger’s lounger, or help himself to someone’s toys or books (nobody minded). He walked in on many games in the pool and football matches. He even adopted himself a Granddad (we have met them before on a previous holiday in the same place and Seb happily called him Granddad for whole week!).

Adjacent to our pool was the baby pool – which meant babies! Galore! Seb was in his element. He LOVES babies. And it just so happened that “granddad” often would sit by this pool too.

On one particular day Seb was intent on spending pretty much most of the day over at the baby pool, rather than sitting with his own family. He was cooing over the babies, being ever so gentle but I was anxious in case his over amorous ways accidentally caused any upset. As I said, he was well received by everyone but it was quite a task following him around for most of the day, when at times I would have liked to have just sat on my own lounger!

At one point in the day, having got up and down off my lounger for the millionth time, I had a really distinct and vivid thought. I had a fleeting moment of being a bit put out – but then I had a word with myself to just “let it go”, he wasn’t doing any harm (at all), it was just a minor inconvenience to me. And what I clearly remember was thinking no matter how tiresome it was to keep getting up, and not being able to take my eyes off him, I knew very soon something would happen that would remind me what an extra special child he is. That is just how it works with Seb.

And there, that very same night it happened.

We went to the marina for our dinner. The kids were bribed to behave at dinner with a trip to Haagen Dazs. The kids delivered their promise, so we delivered ours. As usual he was weaving in and out of the crowds, his excitable lust for life radiating out of his whole being…..and me struggling to keep up!

A few minutes in and a family of three passed us on the left hand side. It was a Portugese family – a mum, a dad and a daughter. The daughter was profoundly disabled and in a wheelchair being pushed by her Dad.

Seb stopped in his tracks. Literally.

He went over to her. He softly picked up both of her hands and gently held them in his.

“Hello” he said.

“What is your name?” he continued.

When there was no answer he looked up to the Dad and said “what is her name?”

“Her name is Agutta” said the Dad

“Agutta” Seb repeated back, looking deep into her brown eyes, “How old are you?”

“She is 29” the Dad said, “but she is more like a little girl…..she is OUR little girl”

Still holding her hands, Seb carried on talking to her and when she didn’t speak he would softly say “Hello Agutta”

“She cannot talk” the father said “she can only talk with her eyes”

And there, right there, her eyes flickered and set on Seb’s gentle face. Somehow you could see that her eyes were smiling, they were animated and full of life. It was like she had been woken up.

The chat carried on a little longer as the girl’s parents asked Seb his name and age too, we said our goodbyes and on we went. And as we walked off I was fighting the lump in my throat and the tears that were close to bursting from my eyes.

Scores and scores of people in that marina, me included, just walking past this girl, lady, avoiding any sort of eye contact for fear of “staring”, every single one of us assuming she had nothing to offer. But Seb, Seb, saw way past that. Past the wheelchair, past the paralysed shell of her body and he saw right into her being. And above all, he saw her VALUE and the value of stopping to chat to her.

I was so proud of him, and slightly ashamed of my own self and the majority of the human race that fails to see the beauty and value in everything, just like he does. Ironic really.

So, just as I had expected to, I had been reminded that no matter how much extra work Seb may sometimes present compared to my “typical” kids, he spreads a waft a magic everywhere he goes, the world is undoubtedly a much, much richer place for having him in it.

And I couldn’t be more privileged and lucky to have him as MY son.

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5 thoughts on “So much to learn….from Seb”

  1. Leanne says:

    Hello. My son is 15months old he is called Louie and he has down syndrome too. Reading your blogs have brought tears to my eyes on how remarkable Seb is. I’m also learning from things you write for the future and maybe what to expect with our Louie. It’s fantastic to read all your thoughts and experiences with Seb i sit back and think about the times I will have with Louie.

    Liked by 1 person

    • What a really lovely comment, thank you so much for taking the time and trouble to write it. It’s a funny old journey, one i wouldn’t swap for anything, not that I would ever have believed it at the start! 15 months is a lovely age. All the best to you and your family and especially Louie.

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  2. Rajvir says:

    Hi, I came across your blog as I was researching about how to help kids with Down’s syndrome to help educate a woman in India who has little knowledge about the abilities her son has and how to help him thrive and encourage him as he he is looked upon as a disable disgrace and no one seems to even want to see him leave alone chat with him or let their children play with him.

    Your articles have brought tears to my eyes and I can’t imagine what the mother must be feeling or made to feel when instead she should be cherishing such a gift in life. You are an incredible mum and Seb is a god sent angel. May he live to achieve great heights and happiness in life.

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    • Oh Rajvir your comment is a bittersweet one. My heart is broken for all the children still living in an age of segregation and exclusion. I am so so saddened to hear about it. Thank your for your kind words on my writing. I was talking to a friend of mine who does field studies in india and I am going to make it my mission to try and change things out there. Thank you again for getting in touch and i wish the family you know well. I believe inclusion is the answer to everything and I hope to help change things in India.

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