additional needs, creative, down syndrome, down's syndrome, equality, family, inclusion, independent, love, pre natal, pregnancy, Uncategorized

A few weeks ago we had a letter home from school about the Midsomerset festival. It is a speech, drama, music and singing festival open to all schools in the local area. There are set syllabuses for each category and age.

As I so often (wrongly) do, I skim read the letter, tossed it onto the ever mounting pile of paperwork/ shredding and dismissed it. But the letter sparked a flurry of my own childhood memories of taking part in drama festivals and going to drama school.

The memories kept flooding back. Specific memories of festivals and performances I had done. I kept thinking how lucky I was to have had these experiences and it got me thinking of my drama teachers. It felt extra poignant too as the building our drama school was based in was recently demolished. My head still stuffed with nostalgia, I thought why not? WHY NOT? Seb can read. With a bit of practice why on earth not?

So I approached the school with an open mind. If it was too ambitious, too much, I would understand. Maybe we could enter him and if it doesn’t work out we can withdraw.

The school, as ever, was supportive and off we set choosing his piece and practicing at every given opportunity – to siblings, cousins, aunts, uncles, grandparents, classmates and teachers.

And today was the day. I can’t even put Into words the pride I felt. Standing waiting to go in and watching the camaraderie between Seb and his classmates in itself was enough to set me off. Such a lovely group of kids. And his one to one support had offered to come with us to be with him, despite it running over out of school hours.

He was listed in the programme as up second but the first candidate had withdrawn so poor little Seb was up first! GULP!

He started off very nervously (something I weirdly loved as it shows he now does have a sense of fear and understood the magnitude of what he was doing). As quiet as a mouse with his hands on his head (they’re usually in his pockets!) and slowly his confidence grew and his voice got louder and clearer. I could not have been more proud. I had physical pain in my chest. He had a go. He gave it his best, best shot. Just like he always does.

But the oddest of all twists of fate? The very lady who was such a key person in my own memory making as child was the adjudicator! My mind is blown away by this. I still can’t believe it now as I type! Pretty bloody bizarre when you consider that I grew up 200 miles away from here, there are many, many classes going on throughout the whole of March at many locations across the city, and this was the first person I immediately thought of when I got that letter home in Seb’s book bag – and I haven’t seen her for (I would guess), 25 years!

Of course once the class and adjudication had finished, I went and said hello, and I was fighting back tears, such an emotional encounter and I was fit to bursting when I told her Seb was mine!

(and a little bit freaked out that her little boy who I used to babysit is now 35!! 󾌴󾌴󾌴)

2 thoughts on “WHAT A DAY! MIND BLOWN….”

  1. tenacitymynameistheo says:

    Hi Caroline thank you genuinely for your lovely message a few weeks ago. It really did cheer me up. Theo continues to do well and I had my first moment of ‘see, doctors, he has surpassed expectations’. He had a go with feeding from a bottle and did so well, I think it took them my surprise. I just hope he continues to surprise us. I feel I am asking so much of him already, then I feel I am being unfair on him. If I imagine what I’d be thinking and feeling if he didn’t have it, it makes so sad. I wouldn’t be analysing him the way I do everyday when I go in and see him. I know you are right when you say it will be ok. Just having the baby in my arms makes it feel alright.
    Any little baby boys are difficult to be around right now. Specially babies of friends as I know I will see them grow up and the gap between my son and theirs will only get bigger.
    I had a post natal appointment last Friday and they told me that the reason Theo had stopped growing and would’ve died inside had they not taken him out was because of the DS. It had obviously affected my placenta too. That was upsetting. And if I think I heard this right, if they could’ve kept Theo in for longer, they would’ve run tests and could have told me he had it and I would have had a choice… My heart stopped at that. At 29 weeks?! I didn’t ask any further as I just couldn’t.
    Theo has been in hospital for 8 weeks, since his birth. I think, depending on how well he can feed without his tube, we are looking at 2/3 weeks in hospital. I know that corner turned will be a good one. Perhaps with less time to think and ponder, I won’t cry so much or feel the regret that I do. I just feel so responsible for his diagnosis. I’m 39…
    Anyway, I do feel the proverbial dust settling. Like I can’t fight it anymore: it is what it is. Theo is Theo and he’s a fighter. He’s going to have to be.
    I would love to stay in touch. Do we do that through blogs? I am so new to the whole blog thing. Never even thought I’d be writing about what I am writing about. Tried to reply on my own blog but it would’t let me for some reason
    Claire xxx


    • Oh Claire, believe me when i say i feel and understand every single thing you have written. Just let yourself go with the feelings and just know, or try and have a faith, that one day you won’t feel them. I cannot even begin to relate to the feelings i had in those early days. The no sleep – and thinking “great I am doing all this and my baby has Down’s syndrome’, every time i looked at Seb I would mentally photoshop his face and imagine what he would have looked like without Down’s syndrome. And as for new babies. Well, yes. And i still hurt when i hear of someone i know having their first baby. I was totally robbed of all of that. But, like you say, it is what it is and i PROMISE you the hurt will begin to lift as your little boy’s personality rises up and up and Theo will transform from a helpless, vulnerable newborn, to a giggling, laughing, walking, talking boy and he will be YOUR boy. He won’t be ‘Downs syndrome”. My husband used to say to me to imagine the day that Seb comes up to me, puts his hand on my knee and says “hello mum!” and that really helped. All newborns are tricky as they take and don’t give much back. That will soon change. But you can’t rush it, it is just something that will happen. The hurt will gradually lift and one day you willr ealise you don’t hurt anymore and then, one day, you will realise that your kid is amazing and you wouldn’t swap your experience for anything. I know you don’t believe me, I wouldn’t have done, but i PROMISE. What is your blog site (sorry if i have missed this – i am so disorganised!). Please feel free to befriend me on FB (have you found my DS awareness page?) – search Caroline Playle (Carly White – haha confusing!) and I will look out for you or my email is carolinewhitenoise@icloud.com And yes, don’t think about what the doctors say, i don’t know if you saw my WDSD video, but there is a lot of outdated views and assumptions in the medical profession. Sadly, a pregnancy can be terminated up to 39 weeks and 6 days if the baby has Downs syndrome or a cleft palate. It is utterly horrifying. Anyway, sorry to end on that note, would love to keep in touch xxx


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