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 :)