There are certain things that we never ever discuss in civilised society, there are certain topics that are not deemed acceptable in polite company and most certainly not for discussion at the dinner table. There are things that Ian and I discuss everyday without batting an eyelid that would make most people quite unwell, and we only feel safe to discuss them with certain friends that work in health and social care , certain family members and of course parents of children with disabilities. 

For us no subject is taboo. 

I felt compelled to write this post as for the past 35 minutes I have been removing lumps of poo from pubic hair ( not mine I hasten to add) with the aid of olive oil and cotton wool ( thank you to a fellow SLOS mum for that great advice) in the end I had to resort to my trusty scissors, which of course prompted a huge meltdown, threats of violence and inevitably getting bitten. But it’s all sorted now, clean nappy and happily in bed.  The  whole cycle will begin again tomorrow. 

When you become a parent you accept that changing dirty nappies and providing high levels of care, you expect that this will last for a few years until your child acquires a degree of independence . However when you are a parent of a child with a disability this continues for many many years and sometimes for the rest of your life. But no one outside of our world ever talks about it. 

Jack is always getting compliments on how smart he is, and he is. He is always perfectly groomed. To achieve this look takes a lot of hard work , the morning routine is taking off last nights nappy , showering him, shaving him ( not easy as he literally doesn’t stop talking) , cleaning his teeth, drying him, putting on his deodorant , dressing him, styling his hair and applying aftershave, putting on his shoes and socks and he is cat walk ready.  Then I start with Lucy, she however is not co operative and is terrified of the shower, so it has to be done quickly whilst she screams bloody murder. If you don’t watch her she flops out of the shower on to her tummy and bounces across the bathroom floor much like a sea lion on dry land. Of course the Christmas sodding cow is also in the bathroom whilst we participate in this pantomime. After fighting her into her clothes , which I imagine is how it feels to wrestle a greased octopus with a prepencity for biting , finally  I can then shower and get ready for work. 

I can’t even begin to talk about shaving Lucy’s underarms. 

As my children were growing up I was under the misguided apprehension that the level of personal care required would reduce. This makes me laugh now. I have been changing nappies for 18 years, clearing up poop and getting dribbled on. It’s a way of life now. It just takes a lot more baby wipes to clean up a teenager. 

Tonight Jack was on the changing table getting ready for bed and he was tired and irritable, he hit himself in the face and I think in the morning he will have a thick lip, I think Ian may have one too as he received a kick in the face for his trouble. 

I’m going to stop rambling now and drink some wine as in the morning it will be back to nappies and winets. Cheers