As I type this post I am waiting for photographs and film of the Pants on his new bike to download on to the mac.
It is normally quietly and efficiently compliant tonight the stupid thing is having a hissy fit and taking it's time so this may turn into a post about something completely different and not at all related to bikes.
Yes. This is turning into a different post.
Here read this.
Costa coffee kicks us out of disabled tot
In a way I am kind of glad that something like this has happened. Why? For weeks I have been listening and watching the build up to the Paralympics. Followed by the coverage of the sport. A lot was said about how it will help the nation become more accepting of disability, how it will only be positive for people with disabilities. Why it could even make us more tolerant, more inclusive.
Yes. It was amazing to see such achievement. And it was great to see coverage of the Paralympics (even if it was Channel Four with ads). We could even feel a bit jublilant that disability got such positive coverage in the media.
And then this. Back to what we all know but never say. Some people are not that tolerant. We don't like different, we are unsure of not the same, it makes us uncomfortable.
I am now used to the stares I get when I park my backside down in some coffee shop. {Which is now no longer Costa bloody Coffee......Starbucks will be jumping with glee.} No people aren't staring at me, but Zack, when I pop in his little feeding tube to his button in his stomach. I then happily push down some medicine and a bit of water. All the while enjoying my coffee and the general ambiance of said venue.
Why I've even fed him his blended diet in a restaurant. You see, I used to give a rats ass what people thought. But then one day I saw a family in Debenhams, one severely disabled girl was being tube fed quite happily by her mother. She didn't give a rats ass and that day I thought why the hell should I be embarrassed about feeding my son. It isn't his fault that he can't swallow safely, it isn't his fault that he doesn't understand the complex movement needed to chew and swallow food. He needs food, he needs water. So he has a small tiny button in his tummy, it's no big thing that's how he eats and drinks.
From that point on I didn't care where I was I just fed Zack. When people stare I stare back. But if that ever happened to me, if I was ever asked to leave a restaurant or coffee shop because of a complaint from a customer. Well....lets just say I might need to spend an evening in the cells. It's beyond shocking what happened, it's intolerant, it's unjustified and it just widens the gap between us and them.
What does that say to other parents in a similar position? Are we all to hide are children away because it makes someone else uncomfortable? Pathetic. So next time you are out and you ever see a child being tube fed, or having to use a suction machine, or whatever medical intervention it is they need to survive. Don't stare. Accept the differences that makes us special. Either that or you'll get a Tall Latte over your head. Stupid bloody woman.
And you, you tube feeding parents. Never be ashamed.
And you, Mac. Start working. I'm still waiting on those pictures.
This isn't my blog, it's Zack's. Zack arrived here seven weeks early, he had no heartbeat and wasn't breathing. He suffered catastrophic damage to his brain, he has cerebral palsy, problems with his hearing, vision and feeding. Our lives are both challenging and extraordinary. He is a gift. I hope that for whatever reason you find yourself reading this blog it can go some way to help those in the same situation and some way to remove the cloak that covers parenting a child with disabilities.
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Dear Zack: You deserve to live as happy a life as you can. You deserve to smile every day, and be hugged regularly. You deserve to be valued for the wonderful boy you are, and the beautiful person you are destined to become. You deserve what everyone else has, and you especially deserve a mom who will fight for you the way yours does. Big hugs, my dears. Big hugs.
.....just want to say there are great places too! Trying to do a gravity tube feed and eat a pizza myself in my local Pizza Express and the waitress offers to hold/deliver the feed while I eat my pizza! I am also known in my local pub for pouring the odd Guinness down his tube! (He is 21 with CP and a tube for 16 years)! We don't mind anybody asking about it but hate the "ssshhhh don't look" attitude.
Or a wheelchair even though that is not strictly a medical device.
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