Yes I'm having a moan. I'm hurt. Once again the Irish Government has targeted the most vulnerable in the Budget. Last year it was my daughter, this year it's me. Okay so I'm not that vulnerable, but plenty of carers are, and hearing grown adults crying on national radio has really upset me today.
A 19% cut in the respite grant.
That's what has people in tears.
But for them too I don't think it's all about the money. It's also about devaluing what we do as carers. It's about what society really thinks about children, teenager and adults with disabilities and special needs.
It's like their needs are not so special after all.
My life is pretty good in ways, but let me give you a little glimpse into my world...
When you get the Sunday papers you use the Travel Section to light the fire. You're not going to need it.
You're out and your child need the toilet/needs changing. So you go home. The disabled toilets are not big enough/do not have hoists.
You can't have a hangover, you can't be sick. Mishandle her and you or she could get seriously hurt. I am very good friends with my physiotherapist.
If you want to wash your hair you have to make sure that your child is not hungry or thirsty, that she's clean and dry, comfortable and has something to entertain her. Then you can leave her alone for 10 minutes, but within earshot.
Wrestling your child into a full set of ski wear for a trip to town on a day in December. It's the only way to keep her warm. Lots of heat needed at home too. Still feet get cold fast.
Feeding your child mashed up chips or chocolate cake, because she cannot chew and nothing else is available. Of course you could have stayed at home, but she needs to go on outings with other kids.
You go to funerals and the cinema armed with an iPad, headphones, chocolate buttons and lots of drinks. And even then you may need to leave half way through when she laughs at the wrong moment.
When people are nice to your daughter and you try not to imagine them as potential babysitters. You're always looking out for potential babysitters, after all, you're going to need them forever.
Your whole life revolves around her needs...well it would if you didn't have other children too..
Sometimes the whole family needs a break.
Respite. Carers need it.
I will not worry about his future I will not worry about his future I will not...crap - I had my list of observations and questions to run by the orthopedist during our visit last week, starting with: "He's tripping more often." Max has take...