Living with Vision/Eye Issues

My son 1s 6 and has recently been diagnosed with degenerative eye disease. The experts are arguing about the diagnosis. Whether it is Stargadts or retinal dystrophy meant nothing to me as the shocked mother of a previously perfect angel of a child with a beautiful blue eyes, a love of learning and sports and a bright future ahead of him.

All I know is that it is likely he inherited this from us, his parents who carry the recessive gene. Neither of us have visual problems. It devastates me still to think I have done this to my son. For his part, my son is slowly coming to grips with the fact that there is something ‘up’ with his eyes. He is MY teacher however. He tries everything, won’t be held back and is convinced he will destroy the eye disease! I have to stay positive for his sake.

It breaks my heart when he falls or trips because he didn’t see something. He recently broke his arm because he couldn’t see the bar he was jumping to, but had a go anyway. In my culture bravery is a trait we foster. So i applauded him for his bravery and as soon as the cast came off we went back to the monkey bars and he conquered them! But it is all I can do not to wrap him up and hold him to me. I know I must encourage him towards independence young whilst he still has a reasonable level of vision. If i was rich i would take him around the world before his vision gets worse. I want to fill his wee head with memories before his vision fades. But i am not rich so we make do with books and the computer. He is my inspiration but the hardest part for me is the unknown. I have no idea how long we have, how much vision he will lose or how it will affect his chances in life. I feel guilty for feeling so helpless. My son is so positive about life, a happy little boy. I just wish i could look in to the future and know he will be ok.

I am blessed that the blind foundation in this country is so supportive. The teachers here have been more support to me than the specialists who diagnosed him. My doctors too as supportive and help me to find appropriate diets and nutrition supplements for my son. My partner is in denial and will not take on board the importance of diet etc. Being more practical than me i suppose, he wants to provide a stable roof over our heads. I want to sell up and use the money to enrich my sons life. He lets him sit and play play station for hours on end, I want him to kick a ball and run through the bush. So it is also putting a strain on our relationship.

When i first got told, the specialist told me to get it in perspective, at least he doesn’t have tumours! I try hard not to see blindness as a huge disability. But i am a perfectly seeing adult. I can not imagine what it is like for my son. He tells me it is like looking through smoke. I can’t help but wish this wasn’t happening to my beautiful little boy. I am still coming to grips and spend a fair bit of time in private crying about it all. But i must say that it is getting easier as i come to grips with it. The only thing i know is that i MUST treat my son like he is completely capable and continue to encourage him towards independence. I will do him no favours if i shelter him. In the mean time i am on the internet constantly looking for support, and pray for a miracle every day.