Hello World!

Firstly, let me thank you for taking the time to visit my blog, if you are reading this you are one more person than I thought would be here!

Let me introduce myself, I’m Kerri, 26 years old, a slightly OCD, friendly female. I like watching trashy TV (sex and the city being a fav), rom coms, buying hair and beauty products, chocolate and from the 12th of December 2014 the thing I love most in the world arrived in my life. My son ❤

Me and my partner were (and still are) a very ordinary young couple. We had been together 4 and a half years, both worked, him on a scaffold firm me in a hospital. We did what every normal young couple like to do. Go out on the weekends, spend all our money on ourselves, generally being young and selfish. Then, on the 21st April 2014 BOOM. A missed period and a positive pregnancy test. Our lives changed forever (for the better obvs).

Fast forward to December 12th and I delivered my son at 5.16am, 8lb 9oz and simply gorgeous. The next 3 and a half months passed in a beautiful, horrific, exciting, confusing, scary blur. I LOVED being a mum. I was also stressed, tearful, grieving (I lost my grandmother and father within two weeks of each other when I was seven months pregnant).I felt guilt at times, when I missed working, my old life. But I also knew I wouldn’t change my life now for anything in the world.

My health visitor came for a routine visit, checking weight, length (99th percentile!), head size, blah blah blah. All good, normal, healthy, positive, health visitor was very happy (yippee). Then he spotted a suspected ‘squint’ (lazy eye). He said he would refer him to a specialist to check it. OK, I thought, thats fine if he has not the end of the world it can be sorted. We waited and waited and waited some more for an appointment to come through. Getting fed up, we went private. So off me and my partners mum went to London to see a specialist. About a week previously, my partners sister mentioned his eyes didn’t seem to focus properly and she thought there could be potential he was blind. We dismissed this as a ridiculous thing to say. How dare she suggest that, his eyes are fine! Upon walking into this lovely doctors, top-notch office, my partners mum mentioned the ‘shaky eyes’ (me still thinking what is everyone talking about his eyes are fine!!)He said straight away how he noticed. Uh Oh.

After various test and pulling and tugging at my poor little fellas eyeballs, a conclusion was made. My little prince has Nystagmus. I’m sorry – what on earth is that? The doctor then proceeded to tell me. I have copy and pasted below the definition of this condition according to Wikipedia, I am still all new to this and learning myself, what I do know is it is a very wide and varied condition and no case seems to be identical to another (from what I have read thus far)

Nystagmus is a condition of involuntary (or voluntary, in rare cases) eye movement, acquired in infancy or later in life, that may result in reduced or limited vision.

When the head rotates about any axis, distant visual images are sustained by rotating eyes in the opposite direction on the respective axis.The semicircular canals in the vestibule sense angular momentum. These send signals to the nuclei for eye movement in the brain. From here, a signal is relayed to the extraocular muscles to allow one’s gaze to fixate on one object as the head moves. Nystagmus occurs when the semicircular canals are being stimulated while the head is not in motion. The direction of ocular movement is related to the semicircular canal that is being stimulated.

With every single word, I felt my legs go numb, my cheeks go red and tears prick in my eyes. That moment, I thought to myself, he will go blind. After all the big, medical terms were explained into dummy talk, the doctor went on to explain how severe he believed it to be in my son. He thought he was doing brilliant, didn’t believe he would go blind, but would have partial vision and probably would never have the vision required to obtain a driving licence. I was numb. Even worse, there is no cure. No operation. I never in my life felt more hopeless, powerless, lost, devastated and uncontrollable of a situation. I’m a person who needs to know there is a solution to a problem, that I could fix it. But there is nothing.

I don’t really remember the train journey home. I remember holding my baby boy in my arms and trying desperately not to fall apart in front of the other passengers and trying to make sense of it all in my head. questions I didn’t ask in my consultation that were now swimming around in my brain. Getting home and trying to explain something that I didn’t understand to my boyfriend was impossible, especially when there’s one word screaming at you in your head. Blindness. No matter what positives were said (he was doing brilliantly, would go to mainstream school, if there were 10 children in the room with the condition, he would be in the top two), all we could focus on were the negatives.  

I hardly slept that night, my head dizzy with so many thoughts. was it my fault? did my gestational diabetes cause this? I was so good in my pregnancy, doing everything by the book – why us?how much more could we take? it all felt so unfair. I was so sad for my poor little boy. How badly would this affect him?how much would he be able to see? how will he be socially? why him? what did I do to cause this? When he was born, we decided not to put up pictures of him on social network sites, will people think this is why and we are ashamed? Friends and family members kept telling us he would be fine, it wasn’t then end of the world, be thankful it could be worse. I wanted to scream at them. How dare they tell me or suggest I shouldn’t be so sad, how patronising of them. I know now they were trying to help, be positive, but at the time I could have thrown them out of my window.

The next morning, after another crying, wallowing session, something just clicked. I had written a post on mums net, some lovely insightful person left a link to the Nystagmus Network UK website. One helpful person even let me know Richard off of Pointless has Nystagmus. I know it sounds silly, but it gave me a ray of hope. you would never have known (like people with Nystagmus walk around with it written in red on their forehead).

I started to look into this condition. On Facebook, twitter, local help websites and the Nystagmus Network. Don’t get me wrong, I saw some of the worst cases on there that are scary, but you also hear of ordinary people leading ordinary lives, they just happen to have this condition which means they have some extra hurdles to overcome. It wasn’t the end of the world after all.

As it stands, we are only on day 8 of finding out my baby boy has this condition. Since finding out, we have been seen at our local eye hospital who confirmed the diagnoses, I have been in touch with the gentleman John who runs the Nystagmus Network, he replied to an email I had sent him with some extremely wise words in there and it was quite touching he had taken the time to email me. I also already know, whatever the next few years are going to bring, however bad his eyesight could get, I will go out of my way to treat him the same as I have done everyday until finding out he has this condition. I will do everything I can do develop his eyesight, as well as stimulating his other senses. As he grows up, I will make sure he does everything – every single thing – a child with ordinary sight can do. I will make sure he grows in confidence and show him he can do and be everything he wants to. I have also decided to plunge myself into this new community, researching the condition, causes, cures, treatments, fundraising events. I cannot believe a condition that appears to be so common (1 in 1000 people are diagnosed) is not more widely known about or researched more.

More importantly, I will continue to try to be the best mum I can be, bettering myself and my life for my family and still do everything we planned to do, maybe with just a little less vision (to be honest, even with my 20/20 vision, things are always clear to me!)

Until next time xxx

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12 thoughts on “Hello World!

  1. What a brilliant blog by a brilliant woman – this woman is so full of strength and love that reading this has brought a tear to my eye. I think writing this blog will inspire not only other parents who discover their child has this condition but it will inspire her son. He will understand that is mum is truly an amazing woman.

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  2. Great blog Kerri – totally describes how I felt after my son was diagnosed with nystagmus…..Fast forward 6 years and I have a confident, clever, slightly hyperactive (!) young man who is a great reader, funny and fearless! He is visually impaired but by god he doesn’t let it stop him – and he’s only in Year 1! The future is most definitely scary but once you get through that initial black hole of diagnosis, you can tackle the world for your son!!! Look forward to your next blog xx

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  3. I like the idea of your blog. We are only 3 months ahead of you on this joinery and are still filled with fear and uncertainty. It is amazing in 8 months how much growth we have seen. Stay strong!

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  4. Thank you for starting this blog. I’m in tears reading this post. Yesterday the HV nOticed my DD’s eyes flickered at her 6 week check. She said she’d check with the GP if it was something to investigate. Now she’s got an appointment tomorrow. And of course I’ve googled the hell out of flickering eyes. And come to nystagmus. Your post gives me hope that all is not lost.

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