The milestone I didn't realise would matter

When we found out about our son's achondroplasia diagnosis a million thoughts and emotions went through me. Not for one second did I doubt our unwavering love for him. What did happen though was an intense feeling or worry and fear. Worry about all the possible physical ailments and fear for the bullying. Worry and fear about HIM not being happy with himself, something that, to be honest, I feel for my daughters too. We all have our own mountains to climb, they'll meet adversity too. Of course I feared like it would be even harder for him. In many ways it will be because things aren't set up for him in the outside world, but in a million ways my fears have subsided because he's got relentless determination and is such a happy contented soul. 

My job is to stay positive about his condition so he learns to love it and the fact that he's different from the norm. My job is also to reach out to others so he grows up in a more accepting society than the one he grew up in because more people know about his condition. I want him to always be this happy and determined. Something that is impossible unfortunately, but just like I try to empower my daughters and teach them that gender divides need to be torn down I will need to remind our son that he can overcome the extra hurdles he faces.

I've found it easier and easier to feel positive about his future, especially as there's an amazing charity group here in the UK (the DSAuk - please head over to my sponsor page if you'd like to donate money to them as I'll be doing a fundraising walk of Ben Nevis later this year for the Scottish region of the charity). Seeing kids and adults alike benefit from their work, getting the chance to compete on an even playing field and realise they are really good at physical things it just hasn't been fair when they've put themselves up against average height people. Belief in yourself is essential for your mental well-being, regardless of height, gender, ethnicity or disability.

HOWEVER, there is a lot that we take for granted as average height people that will make life hard for him. Of course there's the obvious of not reaching things in shops or being seen over counters. But the thing that I remember breaking my heart when he was only a few weeks old was realising that he might not be able to wipe himself after he's been to the toilet as that's something most people with achondroplasia struggle with. All I want for my children is that they can lead happy, independent lives. And after reading about a man who was recommending a wee plastic stick he'd bought from a hardware store to use as a "wiper" (by attachig toilet paper to one end) I felt such a strong feeling of despair for my son and many others like him. Because let's face it, the independence to go to the toilet unaided is incredibly important. It's a privacy we deserve. The pain he'll be in from his hypermobile joints, the stares and bullying, the not reaching things and even the possibility of life threatening conditions all feel like things we'll learn to tackle. The fact that the dignity of wiping your own arse might be removed breaks my heart a bit. Of course we'll figure something out and his arms so far seem fairly long despite his condition but it still seems like an unfair way to lead life when the odds are already against you in other ways. 

Now boys are notorious for playing with their willies. I mean they start as soon as they find it as a baby. I remember quite a few mum friends bemoaning how difficult nappies changes had become because their son wouldn't stop reaching down there. Of course, because of Elis' shorter arms his hands have never gotten in the way of nappy changes. He wouldn't be able to reach his penis while lying down at the moment. But this morning I had let him run about the house without a nappy as it's been hot out and it's given him a rash. Then at one point, while sitting down he, at nearly 17 months, discovered his wee manhood.

I never thought this would be something I'd be so extatic about when I found out I'd be a boy mum. But his delighted laugh and face every time he tugged at it warmed my heart because part of me never knew if he'd reach it. Of course bum wiping may still be a hardship in future but finding his penis has become a milestone with more meaning than I ever knew. We all deserve a chance at a dignified life, our toileting needs play a big part in that (as do our future sexual needs - so maybe don't show him this post when he's older or he'll disown his mother for the embarrassment caused). An important reminder for many I am sure. Equally a sad reality for many parents with special needs kids who aren't able to look after themselves as the average person does.

Dignity and independence are incredibly important, don't forget how important a gift that is to give someone else.