I remember clearly a few sentences that have been said to me in my son's life:
In life I truly believe you have to take the cards you have been dealt and make the most of your hand. There have been times in the last four and a half years that folding felt like the only option but playing the hand graciously was my son, so I followed suit.
In 2009 my first son was born, a dramatic entrance born by emergency caesarean. Life was, for eight days, the most perfect eight days of my life. Baby euphoria took over and I blissfully enjoyed watching him every waking moment. Then, on the eve of his 9th day, it all changed.
It began with a high pitched scream that progressed to refusing food and developed into a leg twitch and his eyes rolling into the back of his head. A race to the hospital at 3 am and a triage nurse examination who carefully said "Let's go straight in to see a doctor." The doctor called the intensive care team into A & E and then began the process of trying to save my son's life. Drama, tears and heartache followed. A diagnosis of Group B Strep, meningitis and sepsis and a three and a half week stint in hospital followed. Eight of those days spent in intensive care were traumatic but manageable. Anything is manageable when you think you won't be taking your baby home.
Intensive care with a critically ill child cuts you to the inner places of pain you didn't know you had. But you live with this, move forward and appreciate what you have, not what you had.
I was unaware of my son's visual impairment until he was three and a half years old. I don't believe I fully believed, accepted or understood the severity until he was four. Then came the guilt, pity for me and for him; and the anger! For every blow we had been given this blow was hitting the hardest and I wasn't accepting that life had thrown this curve ball at him.
However once I looked beyond my own ignorance, I was astounded by what I saw. My son was an absolute marvel to watch and he has never let his CVI be a challenge. My son has adapted beautifully to the only world he knows, the world through his eyes of CVI. He feels his steps with his toes first; he will carefully feel his way around the children's park; he will ask for animals to be described to him at the zoo. He listens to my prompts and in a crowd will "follow my voice". He proudly explains to the world around him "I have tricky eyes" and participates in disability gymnastics to improve his balance and is just about to start horse riding. His school life is just beginning and he is learning from an iPad. Modern technology will open up a whole new world for him.
I think it is fair to show both sides of CVI and he does fall many times. He trips and stumbles but he gets up and he continues to get up. I always say to him "Fall down seven times, get up eight." I truly believe this.
Meltdowns are common as he adjusts to new environments and lethargy is frequent. He can be very sensitive to sounds and fireworks terrify him. He gets very frustrated and angry. Supermarkets and queues are always an experience, as he gets lost in a haze of colour and blurred shelves. His voice gets louder and his movements more frantic. This results in him charging and shouting as loud as he can from aisle to aisle just to cope with the grey, monotone haze in front of him.
My son sees the world in his unique way and daily I'm learning with him what this means for him. Somebody once said to me how terrible it must be to see your child live with a degree of sight loss; I replied, "Every closed eye is not sleeping and every open eye is not seeing."
Every closed eye is not sleeping and every open eye is not seeing
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