It’s just how a mum feels…..
I don’t unfortunately have Keratoconus, I guess you wonder why I am saying that, the reason is simple….perhaps if I had it my beautiful gorgeous son wouldn’t or at least I would then know how he feels. I know the link isn’t proven to be hereditary but it makes you wonder, as a parent.
I dropped him at the test centre, thought nothing of it, other than I would pick him up in couple and then my real teenage boy worries would start. Bang! He failed the test….he couldn’t see well enough to read a number plate. I took him straight to opticians after all it must be something simple…but it is his sixteenth birthday and the optician is telling us he has something called ‘keratoconus’ !?
What the hell is that, I had never heard of it, she explained to us but unfortunately was scaring us even more as her explanation was very clinical and didn’t answer any of our questions. She was talking about ‘hospital referrals’ and ‘end stage transplant’ … I was by this time trying to keep a lid on my emotions for my son’s sake… I was scared. Next I tried our GP…horrified to learn he didn’t even know what it was!
Months later after two different hospitals and various doctors, we finally end at Moorfields. Obviously lots of internet searching in this time had been done by myself…..and things do finally start to make sense.
I remember the first time travelling to Moorfields was a daunting journey made by train, neither of us spoke and he was beyond nervous, I was trying my hardest to hold it together for both of us, it took every ounce of strength I had to get on the train that day.
Nearly three years later, I look back at journey we have made together. My son couldn’t really follow the career he wanted for various reasons some of which were because of his eyesight. But he is making a living, and he is still my son that loves to party, he just gets on with things. He has had very dark times because of the uncertainty of Keratoconus, but generally he is fine.
Me… well I am still the mum who blames herself for missing the signs earlier, I still the mum that worries about what the future holds, I’m still the mum that has a bloody good cry just every now again because like every mum I want my children be healthy and happy and I am still the mum that toughs it out every day and never lets my soon see that it kills me that I possible gave him the stupid gene that caused this horrible cruel disease.
He not been offered anything yet other than regular checkups and he is scared to wear contact lenses so manages with glasses at moment, which I know is not ideal. Unfortunately with kc as you well know because people can’t see you have something wrong with you they assume it can’t be much at all and you making fuss about nothing. We have an appointment in December and we are going to look into all the options available for my son so that he can get sorted out and carry on with his life.
If I could be granted one wish right now…I sure you can guess that one