Thursday 15 October 2015

You are my sunshine

You may have picked up from my last post that little Bud is becoming much more demanding at home and as a result much harder work for us. It’s not so much the behaviour as the relentless need for attention. This hasn’t stopped our positivity it’s more of a ‘testing time’ to be honest and with that comes tiredness, with tiredness everything seems harder, any worries seem to quadruple and become almost irrational. Feelings like, ‘will she always be this demanding? Can we cope with the constant need for attention?’

My theory on why Rosie is being so demanding is that it's down to her own frustrations – wanting to do more and probably getting annoyed when we don’t fully understand what she’s trying to communicate.

I know I’ve said it before but we really are so lucky to have the support network we have around us and at times like this, when it doesn’t always feel like the future’s going to be rosie it certainly plays a huge part in enabling us to grind out the more difficult days.

All that said Rosie’s as adorable as she’s ever been which just strengthens my feelings that much of this is temporary and not something we should be worrying about too much as yet.

This last couple of weeks I seem to be in favour with Rosie – which I absolutely love! She knows exactly how to play me and how to pull on my heart strings. A great example of this occurred last night when I returned home. She heard my voice as I entered the front door and she was shouting out, “Ello Daddy!” at the top of her voice whilst kicking her legs in excitement. Such a welcome home after a below average day at work was the perfect tonic. She put her hand out and patted the sofa, indicating or rather ‘instructing’ me to sit next to her. As I did, she reached her tiny arm as far as she could around my waist and rested her head on me. Those overwhelming feelings of love surged through my stomach as if strengthening our already tight bond – it’s hard to explain but it really was a lovely father/daughter moment.

We continued cuddling and then she leapt up suddenly and decided she wanted to put her dolls to bed next to us. As she tucked them in using the cushion as a duvet I played along and stroked her baby’s face and began to sing it a song – the same song I sing for Rosie when I tuck her in. “That’s probably more like torture” I hear you say but Rosie seems to love it or at least pretends to anyway! It's a Daddy-to-Rosie adapted version of ‘You are my sunshine’.

“You are my Rosie, my little Rosie,You make Daddy happy when skies are grey... etc”

It’s our little thing we have and she sings along with me as I stroke her tired face… Anyway I’m losing where I am… Oh yes, so I start to sing our song to her baby doll when Rosie suddenly reaches out to me, her eyes welling up and bottom lip quivering and say’s (in a really sad and desperate voice), “No Daddy, no”. I really wasn’t prepared for that reaction and I hadn’t realised just how much it mean’t to her but she was clearly upset that I was singing it to her doll and not her. I felt awful and proud all at the same time! She really is one in a million and I feel so lucky she’s my daughter no matter how tough things can get and will inevitably get in the future.

Just before I sign off I wanted to let those interested know that there is an article due out in Saturday’s Guardian (17th Oct) which we should feature in after being interviewed alongside other parents of children living with DS. I have no idea how it will come across or what will be written but fingers crossed it will be another positive piece that can hopefully change a few more opinions about Down’s syndrome. You can now read the article online by clicking here: The Guardian

4 comments:

  1. My daughter is 41 years old now and it never ends.She is still demanding and seeks attention all the time.She never forgets and is relentless in what she wants.She knows how to play me and tug at my heart.I love her and would not change her for a minute.Daddy's Girls know very young how to manipulate daddy.

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  2. Hello,
    I came across your blog whilst reading the Guardian article =>
    http://www.theguardian.com/society/2015/oct/17/living-with-downs-syndrome-hes-not-list-characteristics

    The only link I have with Down's Syndrome is a friend Sylvie whose 27 year old daughter has Down's Syndrome.

    Sylvie "fought" to have her daughter educated at a "normal" school and it's paid off as she now has a part-time job in an organic supermarket.

    Your blog is great; I love the positive messages. Rosie is a credit to you, her parents, and her brothers.

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    1. Thank you so much for sharing your positive story and for taking the time to leave such a kind message. :)

      Tom

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  3. Oh how our girls know how to play us Tom. Great article and so glad you were a part of it. H

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