First Festival as a Disabled Family
We came, we saw, we learnt, we had fun.
As we said when we brought Chops to WOMAD aged 11 months, it’s too young to be part of anything but the experience is great for them.
Something I hadn’t really thought of until today is that we live in a very white middle-class area, though our children see children and adults from other ethnic origins, WOMAD has people from all over the World both as performers and festival-goers. I was sitting just inside a tent in the World of Children, when W did the rare thing of looking and holding her gaze at someone, he was smiling at her, I said, “you are honoured, it’s unusual for her to look at people like that” and he replied, “I’ve probably got a very unusual face”, I nodded. Then I thought about it, he was black. I forget that our children don’t have any black people in their lives and although I didn’t think about this man’s skin colour, he probably did look very unusual to her. What a wonderful thing to give our children, access to enjoy multiculture in such a relaxed environment where everyone is equal, all here for the same purpose, to enjoy.
As for being a disabled family at a festival, it’s been marvellous. The disabled camping is fabulous and the stewards great too, they couldn’t be friendlier or more accomodating. Of course, W melted some more hearts this weekend too, as was to be expected.
Another really special thing for me this weekend, being in the disabled camping, was seeing other children with cerebral palsy and some adults too. A lady probably in her 60’s came over to see Willow outside the toilets as we were waiting for the boys, she held W’s hand and we had a little chat, I told her W had cp and she said, “she’s going to be alright you know, I know these things, I can see it with babies”, I smiled, nodded, I hear it often, she said that she knows it’s hard at first, but it’ll be ok. She didn’t stay and chat long but as she walked away she said, “my son is 40” and smiled. I thanked her. I was reminded again that we just don’t know what’s to come. Another woman told me of her adopted sister who her Mum adopted age 2, she has cp, she’s now 29 years old, she communicates via a board in front of her.
Of course, we don’t know the complexity or severity of either people, but the first woman really warmed me, as a mother of a son with cp aged 40 I should think she has come across many cp children and perhaps babies.
It was perfect timing for W because she’s almost weaned off phenobarbital, a horrible drug for seizure control that she’s been on a tiny maintenance dose of from around 1 week old and we’re noticing great changes in her alertness.
We didn’t visit Camp Cooks in the end but she did have a few triple-blended smoothies from the smoothie stand. Interestingly, despite having vomited at least twice or more a day since her gastrostomy 2 months ago, she wasn’t sick in a spectacular way AT ALL this weekend. The thing she didn’t have was cow’s milk or yoghurt, so we need to do a little further testing there!
At most, though, our festival experience was much like that of a regular family at the festival, as it should be.
Big news is that Chops did really well with using the toilet, we had very few accidents and they were today because he wanted a toilet that had just been emptied, he didn’t want to wee or poo on top of anyone else’s, and let’s face it he’s got a point! 🙂 It was down to us following the shit wagon and cleaner into the toilet for the first wee of the day.
Will we go again next year? Hell, yeah! You coming?