Back to the real world

Hi everyone!

its been a while since i have been on here, life has completely taken over!!

since i wrote my last blog, i have returned to the big bad world of work! I have managed to squeeze Fridays as a day off until after christmas so i am currently working 8-4 Monday to Thursday with my little one in nursery every day (which I’m sure he enjoys much more than being at home with boring old me!).

I have to admit, i am loving the freedom being back at work gives me. it has been a sort of release and an escape from being just ‘mum’. it is nice to have some adult conversation instead of jumping on my partner the minute he walks in the door because I’ve spoken nothing but gooble gabble all day long.

my boy is coming on to 11 months and i am lost as to where the past year has gone and is struggle to believe i am the proud mother of an almost 1 year old baby. I love the time i do spend with him it is so special because i am gone away from him all day four days a week. This age as well has been amazing he outstands and amazes me with every little thing he does. he

In terms of his Nystagmus, he has come on miles. We were eventually seen by an NHS doctor (after chasing it and them admitting they had forgotten to refer him!) and the doctor was brilliant. she did lots of tests on him and also on my partner and my partner mother too. The appointment was similar to the one we had originally but this time she was able to tell us how far he had come on since his last appointment. she said obviously he had they nystagmus but he had learnt to control his eyes! and that he had the vision of any other baby his age. The news was complete music to my ears it was the best news we could have hoped for.

Of course i know it will probably start to become more of a obstecal but I’ve never felt confident than ever we will be able to overcome them.

the worst part is finding out but after that it only gets better. it is not a condition that means the end of the word, if anything it shows hw strong we are and how amazing our children are

Its a calm world after all

Who knew having a baby would be so stressful?!

I mean, don’t get me wrong I’m not naive. I knew it was going to be stressful once the baby came. but it’s actually stressful. I can honestly say, hand on heart, I have never felt such stress in my life. I’m one of those who loves my job, my stressful job as a supervisor for the bookings department in a hospital running a team of 5. I love a bit of stress me! But this is a different kind of stress. And to tell you the truth, the older my boy is getting, the more stressed I am becoming. Sometimes after I’ve calmed down from another bout of stress, I actually have a pain in my stomach. Its everything too. The sleepless nights stress me out. Not knowing why my baby is crying stresses me out. Not being able to have a shower, eat a hot dinner without being interrupted, knowing my baby is going to be in so much pain from his jabs, not knowing what the future will bring, money, wet towels on the floor, my partner. IT ALL STRESSES ME OUT.

I knew I had to do something before people would stop talking to me all together and my partner finds me hiding under all my mountain of washing to hide from it all (which by the way grows by the day even though I am at home most days with my son. Everything just gets half done).

I have this friend who couldn’t be more zen if she tried. Buddhas, candles and incense scatter her home and I used to chuckle about it. I actually envy this friend now because as cluttered as all this stuff seemed – it actually worked. She was always so stress-free. And she had a 3-year-old son. I now believe these were her secret weapon.

So, I did some researched on various essentials oils I can burn in my flat to calm me down, de-stress. I found a brilliant website ( http://www.healthyandnaturalworld.com/best-essential-oils-anxiety-depression/ ).

Typing all of these into amazon to purchase a few, my fingers did some walking. I am now overloaded with essential oils, incense sticks, candles, holders, the list goes on and on. whoops. I believe its going to take me approximately 7 years to get through all this. Not to mention everytime I try to burn an oil my partner decides to have an allergy attack and blow everything out. 😦

So basically, I have resided to shutting myself in my bathroom when I get a spare 10 minutes to burn all these oils at once trying desperately to stop myself from having a heart attack from my stress.

I will keep you all updated on the effectiveness of them, but would love to know your thoughts on whether burning oils and candles work or any tips you all have on relieving stress (I’m sure I will try each and every tip!!)

Until next time xx

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