Monday 17 September 2012

I won't back down

It's been a tough couple of weeks for me personally where I've began to question everything I'm doing, especially in light of all the negative media coverage that is surrounding Down's syndrome at the moment.

Life isn't easy for any of us at the best of times and weeks like this have taught me to accept that I won't be on top of everything all the time. For all the positivity I write about Rosie I am no exception to showing a bit of emotion now and then from the stresses and strains of trying to continue raising awareness. I found myself taking ten minutes out of work last week as I felt a 'wobble' on the horizon. I sat in the toilet, closed the door and (alpha males look away now)...blubbed like a baby, in truth it's been a long time coming. I know life isn't always 'Rosie' and I have to learn to allow myself these wobbles without feeling too guilty. Everytime I pulled myself together I visualised Rosie's face smiling at me like she does when I get home from work and it just set me off again.

I don't worry too much about Rosie herself (outside of the norm for any father and their daughter) or even wonder what might have been had she not had DS – my stresses and occasional tears are induced solely by the feeling of (for want of a better expression) 'pissing in the wind' in the fight to change perceptions. A fantastic blog post, "A mosquito in the room"  reflecting many of my recent thoughts, only in a more eloquent way from Hayley at Downs Side Up was just the war cry I needed to get back up, dust off and carry on.

I also received a wonderful anonymous comment from a grandparent on the Rosie's Surgery page just at the right moment to confirm why I need to continue. Anonymous if you are reading this my thoughts will be with your Son, his wife and little Elsie Mae on 24th.

Thank you to my ever supportive wife and rock Karen, Downs Side Up and 'Anonymous' for helping me out of this mini dip, I shall push on and continue to try and help the growing number of passionate parents out there fighting to change misconceptions forever and to drown out the weak, often illiterate but hurtful voice of the 'trolls' we find at almost every corner.

Wow, I feel so much better for that – if you're still reading this and haven't given up then thank you for listening!

Wednesday 19th September will see the one year anniversary of Rosie's heart surgery, oddly enough I feel more emotional about it now than I did last year – I'm guessing that's down to riding the wave and getting on with it at the time, but now almost one year on I can sit and reflect without the health worries to appreciate the magnitude of what little Rosie went through. As time goes on the surgery date will probably become like wedding anniversary's... some I'll remember some I'll likely forget! This one however is an important one on many levels – to celebrate the life that was saved that day but also to revisit the emotions with Karen – even let go if we need to as that wasn't so easy to do at the time whilst we attempted to remain strong for each other, the boys (and Rosie). It's my hope that after Wednesday I can finally put some closure on that chapter of Rosie's life and finally move on. If it is of interest (and you haven't already done so) you can read about my experience of Rosie's surgery by clicking HERE.

In the mean time I'll leave you with my favourite picture of Rosie which hopefully illustrates exactly why the fight for acceptance must go on – she is so darn cute it almost hurts! The picture has had an amazing response across internet communities with a worldwide reach. I hope you like too!

I also include a Johnny Cash rendition of the Tom Petty classic I won't back down which is lyrical perfection for my current state of mind.

Normal more positive service shall resume with the next post I promise :)


12 comments:

  1. You've definitely opened peoples' minds and raised awareness locally Tom. Rosie is such a star and so quick to smile....you only have to see what it's like in the school playground at pick up!

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    1. How kind. Having such a great, supportive local friend base certainly makes things a whole lot easier in terms of acceptance and awareness. Thank you :)

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  2. Tom, I completely love your blog. My children really liked the videos I showed them on it too- especially "talk to the hand"!
    Definitely you must keep up the good work you are doing- if only so that we can keep seeing mega-cute pictures and videos of your lovely daughter!
    And because it it good reading- always interesting and positive and fun.
    It's also great to have the viewpoint of a Dad too.
    Hope the surgery anniversary goes ok- we celebrated Sam's with some heart shaped cakes- an idea I got from a US blogger whose daughter has DS.
    Certainly worth celebrating her good health!

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    1. Hi Rachel, thanks for the comment. Great idea with the heart shaped cakes - my Mum & Dad bought us a heart shaped cake tin so we can do just that in the future! Hope Sam is well and look forward to catching up soon. Not 100% sure we'll be at next Chatterbox but hoping we can be.

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  3. Brilliant post.
    "Wibbles" as I call them, are allowed my friend and try to not doubt what you do so well. You're a loving father with a beautiful daughter, doing great things which inspire and help others. I wish you all the luck in the world and if there's anything I can do to help you get your message out, then please let me know.

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    1. Thanks for making the time to post a comment. Your offer of help getting the message out is much appreciated, by merely retweeting this link you boosted it's reach further and I'm very grateful to you for that. Sorry it's taken so long to reply!

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  4. Hi
    I was talking to you last night on Twitter.
    Great blog and that last post was excellent.
    I as a dad myself sometimes feel I have to be strong all the time and can't show any weakness. I do though sometimes when I'm alone shed the odd tear for the situation I find myself in but these have become less and less as I come to terms with my sons diagnosis.
    My son is 9 months now and is with all honesty the best thing that ever happened me.
    Thanks again for the blog,it's great to hear it from a Dad's perspective.

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    1. Hi Eoin, words like these keep me going - I've been especially pleased to receive comments from Dads recently as we are a voice that aren't represented nearly enough in the DS community. Much love to your family and thanks for your kind words.

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  5. HELLO TOM ....YOU AND YOUR FAMILY ARE TRULY AMAZING .....AMAZING PEOPLE RARELY RECOGNIZE THEIR OWN ABILITIES BUT YOU GUYS HAVE ALREADY BLOWN WIDE OPEN THE MYSTERIOUS IGNORANCE ABOUT DOWNS ....MY CONGRATULATIONS AND RESPECT TO A REMARKABLE FAMILY ...FORGIVE CAPS ITS THE OLD PARKY SHAKY JEDI THINGY ....LOL

    PS ROSIE IS TOTALLY GORGEOUS XXX

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    1. How kind Bridget! Thanks for your lovely positive feedback it means a great deal to me to think it may be helping raise awareness to those (like myself) who were very ignorant about DS. Take care and hope to see you again soon. x

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  6. Hi! I just found your blog through FB. Your DD is a doll. I am going to be following your blog as we are almost done with the process of getting approved to adopt children with Down's syndrome. Thanks so much for sharing your story.

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    1. How exciting and wonderful that you are close to adoption approval! I wish you all the very best and thank you for your lovely comment. :)

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