Celebrating Wobbly Wednesday

Today, at Where Wishes Come From HQ, we are celebrating Wobbly Wednesday. There is quite a good chance that you have never heard of Wobbly Wednesday before and there is an even greater chance that you won't ever need to celebrate it. It has not been in the media, outside of the UK, and it's possible it may never be given the attention it deserves here in Ireland.
We're not  going to celebrate it in a big way this year because the person we are celebrating it for hasn't got a clue that it exists. Yet, at least.

When my girls were about three months old we began to notice that Lile's eyes were a bit different from her sisters'. They are not identical twins, so I don't mean that they looked different, which they do, rather that they behaved differently. When Lile looked at things, or made eye-contact with you, her eyes would scan from side to side, never stopping.

You know when you are on a train and you notice the person sitting opposite you looking out of the window, and how their eyes move quickly from side to side as they watch the world move past them? It was like that.

But, all the time.

Her eyes never stopped moving and they went even faster when she was tired or upset.

People would make comments like "Oh, she's really taking everything in, isn't she?" and I'd smile and agree, but I knew it was something else.

I had seen it before you see, though I didn't know then what it was called.

Lile has an eye condition known as Congenital Idiopathic Nystagmus or basically, her vision is reduced because her eyes 'wobble'.

I knew she had it before the official diagnosis because my paternal Grandmother has it too.

My Father and his brothers also have it.

Many pairs of eyes, that I have looked into since I was born, wobble, but I had never thought to ask why until after the condition somehow skipped a generation, never appearing in me or my siblings, and popped up again in my gorgeous little Lile.

The doctors she was referred to were amazed at how calm I was when they gave the 'Nystagmus' diagnosis. Apparently, many people are devastated when they are given the news and I can understand why. I'm sure I was only calm because I was already familiar with it and knew that the condition wouldn't stop Lile reaching her goals. Depending on the severity of the condition even very basic things like making eye-contact can be difficult for a person with Nystagmus. Sometimes depth-perception can be affected and dizzy spells can be common. Often people with Nystagmus can't drive, not always because of their reduced vision, but because it takes them longer to see. Longer for their eyes to focus and tell their brain what is in front of them. Sporting activities, especially ball sports can, for the same reason, be extremely difficult too.

Sometimes Nystagmus can be so severe that sufferers can be registered blind and have huge issues with ordinary day to day tasks.

Luckily, Lile's Nystagmus is relatively mild. Her eyes have slowed down considerably since she was a baby, her vision is quite good and, though she is a little short sighted, she probably won't even need glasses until she is in 'big' school.

Nystagmus affects her in little ways already, but at this stage of her life it doesn't have a huge impact. When she was just learning to walk she would do a funny thing if she was crossing a point where two floor-types met. For example moving from a carpeted floor area to a wooden one. She would get down onto her knees and feel along the meeting point, presumably checking that there was no step, before standing upright again and toddling on her way. Perhaps her depth perception was still adjusting at that time because I haven't noticed her doing it in a long time now but she is still very cautious and careful on stairs.

She tilts her head to the left a little when she is looking at a book or watching TV. Finding the 'null-point', the position at which her eyes are stillest and she has the best focus. She also prefers to have a book directly in front of her when we are reading stories, which makes things tricky when I'm reading to both girls.

She doesn't realise any of this, of course. Not yet. It's just normal for her. Another unique part of  her beautiful self.  Perhaps, if she has any issues in school we might need to work out some coping mechanisms, but so far she is a perfectly normal little girl.

I have high hopes for Lile's future too. She is lucky to have a great  role model. My father had a successful career as a photographer, making great use of his eyes, regardless of the wobble!

To mark the first ever International Wobbly Wednesday we will have fun with some playdough and some googly 'wobbly' eyes, have some wobbly jelly as a treat and I will publish this piece in the hopes of raising a little more awareness for the Nystagmus Network, an organisation in the UK that supports many people with Nystagmus and parents of children with the condition.


The Nystagmus Network do amazing work and I have learned a lot from their site and Facebook page over the past three years. With no support network in Ireland for people with this condition, they are a lifeline to parents here who need to find out more about their loved ones' wonderful wobbly eyes.

I hope that 'Wobbly Wednesday' will become part of our annual calendar of celebrations - even if only to have an excuse to eat jelly and ice-cream mid-week!

11 comments

  1. Absolutely gorgeous little girl, and her wobble will only be part of her lovely charm!

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    1. Thank you Emily! She's a quirky little thing anyway, so what's one more quirk eh? ;)

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  2. Wonderful post! I truly enjoyed reading your story and laughing at the parts that reminded me so much of how my own daughter acted when she was younger. I live in the US and it looks like we got a lot of participation in Wobbly Wednesday on this side of the pond, too, so it looks like the awareness is going international! :)

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    1. Thanks so much for stopping by Christina. It's wonderful to connect with other Mums who have experience of Nystagmus. It's fantastic too that awareness is being raised all over the world today!!

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  3. What a gorgeous, positive uplifting post - you've obviously given Lile a great start towards feeling completely happy in herself

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    1. Thanks Office Mum xxx. I really want her to feel confident about it as she grows up so that she wont be self conscious. I'm hoping that if we celebrate it every year it will have a positive association for her and that she'll accept it a special unique part of her.

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  4. That's a new conditions to me, and great that you are so positive about your beautiful daughter x

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    1. Thanks so much for stopping by! Yes, it's kind of rare I suppose, (although clearly not it's not rare in my family!) which is why it's great that awareness is being raised today.

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  5. you are the best possible mum for lile...well we already knew that, but extra super duper now. you will help her know her own normal...a good task for all of us to take on. i'm gladdened to hear of your positive outlook in the face of distress. love to you.

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  6. I love your attitude to this. Virtual high five. I also love that photo of Lile, she's ridiculously cute. I want to pinch her cheeks, and that's coming from someone who is not a cheek pincher. Now get back to your novel :)

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