The hospital I have to go to for my ME treatment is on Great Ormond St the same as the children’s hospital, but the hospital I go to also is attended by many parents with severely disabled children. I have noticed just how many couples there are with these children, couples still together, caring for these children and I am touched by just how awesome the NHS is in the UK. Yes, the NHS can make mistakes, and yes, there are issues, but there are so many issues with every single health system worldwide.

My point is, when I ran a charity in China in aid of abandoned kids all the kids who were abandoned had a disability even if it was just a really slight one that was easily fixed, and some of these children were like gorgeous, beautiful gorgeous kids, but they were abandoned because their family couldn’t afford the operations, or the time out of work to look after the kids with disabilities – many of these parents worked 20-30 hours away from the city leaving the kids with the grandparents and because the grandparents were so elderly they were unable to look after the needs of these disabled kids 24/7. With an able child you can leave the kid to play but when they are disabled, or severely disabled you can’t.  That’s not to say some parents didn’t try, we had some kids at the orphanage, abandoned at 5-7 years of age who talked about their mothers and called out for them during the night.

My point is, even though our parents don’t get us at times, have not understood our “pain” I think they have really tried by keeping us, by not abandoning us when it has gotten so tough – I don’t know about you but it must be really really tough to see your child in pain. Having a child is not an easy choice. It’s definitely not as easy as it looks. It’s like what Elisabeth Shue’s character says at the beginning of “What to Expect When You’re Expecting” – “Pregnancy sucks” http://www.youtube.com/watch?v=JQTetUGvKWk

And I guess after going through swollen feet, various infections, sweats, flushes, and maybe even a very tiring pregnancy having then a disabled child must be a shock. Especially if they had no idea what a club foot or club feet is. Must be devastating, must be saddening and must be complicated. Caring for a newborn is hard enough, but one with casts and night bars… more complicated.

So perhaps when we feel they are dismissing our pain, maybe what they are doing is being strong for their own sake, that we turned out being able to attend school, walk, be mobile, get a job, – yes life is much harder for us, and yes we are in pain – no parent wants to see their child in pain, and perhaps why they appear dismissive.

We often hide from the things that hurt us. It’s up to us if we want to face our difficulties, and that’s by expressing how painful it is to live with a club foot/club feet. If you haven’t already, do join our Club foot/feet Facebook group. We are here for everyone, those born with club foot/feet and those who are parents of children too.