Passionate about Polymicrogyria…

Isabella as you know was diagnosed with Polymicrogyria in December. Since that time I have been trying  to find out as much as I can about it. This has been a struggle since there is very little in the way of information out there.

As I found such great support from the SWAN UK Facebook group, I searched for groups on Polymicrogyria. I came across 4 international groups. These groups while very friendly, were large and had people from all over the world. I found myself getting lost on the sheer volume of traffic in some of the groups. I wanted to speak to parents from the UK, so like SWAN I could get in  touch and meet up with people local to me. So I asked about on the other groups if other Mums would be happy to join a group that was just specifically for the UK and Ireland. I was mindful of upsetting the other groups and stressed that the new group would merely be an addition to the others. Another Mum contacted me and said that she was interested in helping. So together we set up the group. We called it Polymicrogyria Family Support UK and Ireland.

Not long after we set up the Facebook group, Suzi and I got chatting and realised we both wanted the same thing – more awareness for Polymicrogyria in the UK and Ireland. As I said there is very little in the way of support and information out there, even the teams that work with our children know very little about PMG. So we decided that together we would set up a website. We wanted the website to give people more information about PMG and also lead families to our friendly Facebook group which was starting to grow nicely. We then thought about starting a charity, one that was for families that were affected by PMG. This along with the website became the focus of our attention.

It then became a daily chat on text or Facebook on the designing of the logo for the charity. Choosing the colour was relatively easy. We wanted to stand out from other charities and move away from the many pinks and blues that are out there. Purple is the colour associated with epilepsy, which is something that affects a lot of sufferers of PMG. We felt it was important to keep the full name of Polymicrogyria in the title rather than using the shortened PMG . We liked the name that we were already using for our Facebook group as like Ronseal it does what it says on the tin.

The Charity is all about raising awareness and supporting those families affected by Polymicrogyria. We felt that charity should have  a friendly mascot and after batting ideas to and fro we decided on ‘Stars’, as that is what we feel our children are. There are three stars, ‘Poly’, ‘Micro’ and ‘Gyria’. We wanted the slogan to be short and catchy -’Give hope to a Star’. The future with anyone suffering with PMG is unknown but the strength and determination they show is inspirational, by people supporting the charity they are giving hope to our ‘Stars.’

 

My Husband Paul is in the RAF and only a few days after we launched the charity he had a dinner night which raised £212. This was a simple way to raise money, with merely a bucket and logo on and a brief intro about the charity, over £200 was raised. Imagine what we can achieve on a bigger scale with more preparation and organisation.  His work place has now also said that ‘Polymicrogyria Family Support’, will be the official charity for any future fundraising events, which is simply amazing.

Whilst we are putting the finishing touches to the website, we have set up a Facebook Page that people can like.  This will be the place to raise awareness on Polymicrogyria and our charity, as well as future fundraising events. Now it is up and running, if you haven’t done so already, can you please share it on your profiles and ask your friends to do the same.

It is an amazing feeling setting something with your loved ones as inspiration. I honestly have a great feeling about it all. We already have 219 likes which is fabulous, but I know we can achieve more. Already we have informed one Mum, who had never heard of PMG before and thinks her Daughter may have it and she will be talking to her daughter’s specialists. This is the aim of the charity is, to reach people and spread awareness and hopefully find some more people who could benefit from our private FB page.

We will in the near future be selling wristbands and organising Fundraising events. So watch this space. So for now if I could ask you again to like the FB page and post it on your profile asking your friends and family to do the same xx

https://www.facebook.com/PolymicrogyriaFamilySupport?fref=ts

 

THANKS AS ALWAYS for your support

 

 

Out to sea..

Yesterday was Isabella’s 3rd birthday. It took us both by surprise. People say that time flies when you have kids and I have to say I wholly agree. In fact I would say it is un understatement.  It doesn’t just fly by it goes by at super sonic speed.  Blink and you have missed it.

Our three years with Isabella have been slightly different than expected.  Who’d have known that Isabella being born without any complications and who ticked the right boxes in the new born tests, on reaching her third birthday wouldn’t be unable to talk or walk.

As a family over the last three years we have come a long way and Isabella has made some truly amazing progress. However, as time has gone on the gap has really started to widen.

I always tend to use analogies to describe our lives and how we feel. It makes it easier for me to explain and others to understand. So whilst out walking another analogy sprang to mind.

When Isabella was born we were living on the mainland with everybody else. Then as the months went on and I became increasingly worried about Isabella and her development a line appeared between us and the mainland. Like a border between countries, where eventhough they are next to each other, life between these two countries can be very different.

Isabella wasn’t sitting unaided, playing with her toys like the children around her. People noticed and asked about her development.’ Oh, is she not sitting yet?’ They would ask. I didn’t have any answers. We were still waiting to see someone, someone who hopefully would have them. Apart from my parents we hadn’t told anyone about MY worries and concerns. The fact I had pushed the GP for a referral to see a paediatrician.  So I would reply, ‘Not quite yet, we are getting there’. When actually in truth she had appeared to get worse constantly flopping forwards or back.

So in the early days I would bat away awkward questions or simply avoid situations where they would come up altogether.  Not because I was embarrassed,  because I didn’t have any answers and didn’t know what to say.

I tortured myself with child development books and would recieve daily e mails on what my baby ‘should’ be doing. I would spend hours on Google.  It was actually Google where I self diagnosed her Cerebral Palsy.  My husband didn’t want to hear. He truly believed there was nothing wrong and that the long awaited appointment with the paediatrician would prove him right. He thought he would say she was behind and would just ‘catch up’.  So sure in fact when we finally got the appointment he couldn’t make it due to his first day in a brand new job.

So when the paediatrician agreed wirh me and said it was probable Cerebral Palsy my husband’s world was shattered and he was racked with guilt for not coming with us. It was hard trying to stop his guilt,  as he had nothing to feel guilty about. As a mum I just knew someting was wrong and hated myself for being right.

Now that someone had confirmed my darkest fears and we began to tell people, I slowly felt the land around us give way and crumble. We had started to detach from the mainland. Our family was now on an island on our own. We were no longer joined to the mainland.

As time went on we seemed to drift out further to sea the gap between us and the mainland widening. Our little island inhabited by a few of us including Isabella’s specialists.

Other visitors to the island became less frequent.  Maybe because visitors felt our island was more boring and mundane.With less spontaneity and more routines in place. Whatever the reasons we floated further and further away.

We obviously view our island differently. It is not boring and mundane. In fact it is quite a magical island with rare birds and butterflies and for the most part the weather is good.

But i have to say that there are some people who saw the cracks and felt it crumbling away and stayed with us on the island. They have been with us drifting along and watched the mainland fade into the distance.  Like us they like life on the island.

We have people who will occasionally take a boat out to visit, but they don’t stay long. They find the island uncomfortable, different and prefer life on the mainland. On the odd occasion people from the mainland will wave, but it is getting harder to see them now, they are little dots on the horizon.

Although we maybe on our relatively small and sparsely inhabited island in the middle of the sea we are not alone. We are surrounded by other beautiful, tropical islands. We are all drifting out into an unknown sea, but we are all drifting together…

 

‘The Undiagnosed’ – In Memory of ‘Beatrice’ and ‘Harry’…

So tomorrow is our very first ‘Undiagnosed Children’s Awareness Day.’ While all the talk and posting on Face Book and Twitter has been amazing, as it means the word is getting out. It has made me think there may some people who will find tomorrow difficult.

Beautiful ‘Beatrice’ sadly passed away last year and very recently we lost the gorgeous ‘Harry’. I wanted to write a poem for tommorow to celebrate our SWANS, but I wanted Beatrice and Harry’s friends and family to know that their beautiful children’s memories will live on forever in our hearts. So ‘Beatrice’ and ‘Harry’, I dedicate this poem to you both.

Today is the day,

Where we spread the word,

Where ‘Undiagnosed’ Voices,

Need to be heard,

 

They shouldn’t need a label,

Or their condition a name,

For our children to be,

Treated exactly the same,

 

Being ‘Undiagnosed’ you live,

In world of unknown,

No answers to questions,

You feel so alone,

 

Why do we have to,

Plead and fight,

To get what they need,

It’s just not right,

 

The playing field should be even,

All rules should be set,

A diagnosis shouldn’t determine,

The help that they get,

 

We often feel deflated,

Down trodden and beat,

Things only accomplished,

When we turn up the heat,

 

Our children are an inspiration,

So determined and strong,

But we are made to feel,

Like they don’t ‘belong’,

 

So today is our day,

We will take our cue,

To stand as one united,

Wearing pink and blue,

 

Let’s hope today raises interest,

On conditions so rare,

The ‘Undiagnosed’ not invisible,

And the world more aware,

 

But as much as this is,

a great day to rejoice,

As our ‘Undiagnosed’

Finally now have a voice,

 

We mustn’t forget those,

Who sadly have passed,

Theirs lives too short,

But their memories held fast,

 

To ‘Beatrice’ and ‘Harry’,

And all those before.

May your memories live on,

Forever More.

 

By Tracey Gardiner

 

 

‘Undiagnosed Children’s Awareness Day’ ~ April 13th 2013

Saturday will be a big day for SWAN UK and SWAN International and all of it’s members. It is the first time that we will have a day dedicated to our Undiagnosed Children. Over the last year through Fundraising, blog posts, and a massive push to spread awareness, people are slowly beginning to recognise the term SWAN and starting to understand that thousands of children around the world are living without a diagnosis.

It is really important for Saturday to be a real success to spread the word even further. So once again folks I am asking you for your help. How can you help you may ask? Here are some of the ways you can help spread awareness….

1. Wear ‘pink’ or ‘blue’ this Saturday 13th April

2. Take photos of you wearing ‘pink’ or ‘blue’ and upload them to your FB/Twitter page with a caption explaining the significance of the photo and ask your friends to share it.

3. Change your FB and/or Twitter profile photos to show the ’Undiagnosed Children’s Awareness Day’ Banner and ask your friends to do the same.

4. If you don’t already, like the SWAN UK FB page and ask your friends to do the same.

5. If you are a fellow blogger, please re blog this and/or yesterday’s post

6. If you a fellow tweeter please tweet about ‘Undiagnosed Children’s Awareness Day’

7. Tell everyone you know about it!

Thanking you all in advance…here’s hoping it will be a massive success.

Down in the jungle….

From the moment I knew that things weren’t quite right with Isabella until the day we sat nervously in the Pediatrician’s office, we were living in the dark. Then even after that eventful day we went from being in the dark, to being thrown into the unknown.

So there we were in the unknown. Although we finally had people on our side and we had a group of specialists enlisted to try to help Isabella, we still felt very much alone. It felt like we were lost in the jungle. This is actually where the title of my blog came from. The idea that we were ‘Down in the Jungle, where nobody goes..’ Like the nursery rhyme. Monkey is what we call Isabella. So we were ‘Down in the Jungle with Monkey’.

The Oxford Dictionary definition of Jungle :

1. an area of land overgrown with dense forest and tangled vegetation, typically in the tropics

2. wild tangled mass of vegetation or other thing

3. situation or place of bewildering complexity or brutal competitiveness

These definitions couldn’t be more true of our lives. We were stuck in a jungle. We were in this dense forest where we hit tree after tree and didn’t know where we were going and people didn’t know how to help us. We encountered the tangled vegetation of paper work, appointments, hospital visits, tests and phone calls. Suffered the heat of the tropics too, with temperatures rising and blood boiling, when people let us down and kept us waiting. Our once straight forward family life had taken a turn and the road was no longer straight and we could no longer see where we were going. We were most certainly in a place of ‘bewildering complexity’. Forget the wood, we couldn’t see anything beyond those bloody trees.

Then we came to a small clearing where we found another family like us lost in the jungle. They too had a child, a little older than Isabella but just as gorgeous and just as puzzling to the medical profession. It was nice as we no longer were alone. So we continued wading through the jungle, feeling better about having some much-needed company, the jungle can be a very lonely place.

On we trekked and waded through the jungle helping each other negotiate some of the really tangled vegetation. Then we came to a huge clearing and we discovered more families here, about 100 or so, all lost in the jungle also. The difference was they had set up a temporary camp. It was somewhere people could go back to, when the heat and the vegetation all got too much. A few families had ventured out much further into the jungle, as their journey had started earlier. They were able to give advice on how best to navigate around certain trees and particularly tangled masses of vegetation.

Our new companions very quickly became our new family. We decided to stay with them at base camp. We often sit around the camp fire and share our experiences of the jungle. Our highs and our lows. We celebrate our children’s achievements. We also offer each other care and support when we have been bitten by some of the nasty bugs that live in the jungle or had a nasty bump on the head from tripping over tree roots. Some of us have suffered from heat exhaustation and felt like quitting and leaving the jungle but a natter and some TLC around the camp fire helps us feel strong again, to face another day in the jungle.

Now that we have found a base and a new family, it makes the jungle all the more bearable. We now see the beauty of the jungle, the butterflies, the birds singing and the sunshine peeking through the tops of the trees. We still have to battle through the dense vegetation, but it is nice knowing we are not doing it alone.

The base camp has grown rapidly in the last year, quadrupling in size. We tend to have lots of small camp fires burning now, as it is hard to hear everyone sitting around a large one, but we all know we are there, looking out for one another.

This Saturday 13th April is ‘Undiagnosed Children’s Awareness Day’. Thousands of children in the UK, Ireland and around the world have severe developmental delays that are undiagnosed. Without a diagnosis families often experience difficulties in accessing help and support from various services including, health, educational and social services. They become lost in the jungle. Although we have ‘one’ diagnosis for Isabella there is still more to her condition that remains undiagnosed. We still have a lot more of the jungle to trek through and our unknown journey is still continuing.

There may be other families lost in the jungle and needing to find ‘SWAN’ Base Camp. Please on Saturday could I ask you to wear ‘pink’ or ‘blue’ to raise awareness for those thousands of children around the world living without a diagnosis. I am glad we found Base Camp and a new family and hope that any lost families in the jungle find us very soon…..

 

A year on…

I cannot believe it is a exactly a year to the day that I started my blog and opened up my heart and shared our journey with our amazing and beautiful Daughter Isabella. A year. 365 days. It seems almost ridiculous that so much time has passed us by so quickly, but what a year it has been.

I started the blog initially, as a way of expressing my thoughts and in some cases venting. In fact looking back my first few posts do seem quite negative! But writing them really was (and is) like therapy for me. Once I had cleared out the clutter of negative thoughts and experiences, I was able to share other happy experiences and talk about the importance of family and friends. That is not to say I haven’t written any negative posts since, and sadly I think there will always be the odd few more often than not, depending on particular situations that we find ourselves in.

Once I had written a couple of posts I was addicted, it felt so good, so therapeutic, sorting and arranging my thoughts. Sifting through the good experiences and the bad. To start with my love affair with my blog was constant and regular. My blog was my companion while my husband was away. It was also his companion, as he had time to read through my thoughts and digest the information in his own time, without me babbling or shouting ( I am loud on Skype) and him constantly asking me to repeat myself, due to the connection on Skype being so poor. When my husband finally came home after four months away, inevitably the love affair became less frequent, as I now had my ‘other’ companion.

Whilst pregnant with Isabella I had written a blog from Isabella’s perspective inside my tummy. The blog although on the internet was not particularly publicised and was only read and followed by my family and close friends. This blog however has been different and taken on a life of its own. To start with my only followers were again my family and close friends. Then my new-found fellow SWAN Mummies began to follow me and then through the power of Facebook and Twitter the numbers slowly grew. It is strange to think that people in different corners of the world are reading about our special little girl and our journey through the unknown.

I know some people may think it is strange that I have my life with my Daughter on the internet and had you asked me a few years ago about sharing my life on the internet I would have laughed at you and thought you were mad. For all its negatives and downsides, such as internet trolls and cyber bullying the internet has proved it can be positive and make an impact. Over the last year my blog (and others like it) has raised the awareness of SWAN and children with undiagnosed medical conditions. It has made strangers and people I know understand a bit more of what life is like with a child with disabilities. It has made people understand that things aren’t always what they seem. It has made people realise that how they act and behave in certain situations (intentional or not) can have a devastating impact on other people.

I am not saying my blog has reached the masses by any means, but it has reached a few people and made them understand a bit more and in turn tell other people. Through my blog I have also had people interested in raising money for SWAN and interested in the classes that Isabella goes to.

When I go to classes with Isabella, I always tell the class teacher to share my blog via e-mail so that people who feel uncomfortable in asking questions can understand more about Isabella and her difficulties. It also means that I am not bombarding strangers with a long, shortened version of Isabella’s journey. My blog acts as my voice.

In the last year Monkey’s journey through the jungle has been a long one. When I started the blog Isabella was undiagnosed and I had only just discovered SWAN. Now Isabella has her diagnosis of Polymicrogyria and quite frankly I couldn’t imagine my life without the support of SWAN and more recently my fellow Polymicrogyria (PMG) Parents.

We have also completed a sponsored swim in aid of SWAN and been interviewed twice on BBC local radio and appeared in the local newspaper.

We have been to hospital on several occasions for several appointments including;two eye tests, two EEGs, an MRI Scan and had bloods taken. As well as a check up with the Pediatrician, a genetics appointment and Neurologist appointments, including a referral to Great Ormond Street, where we were knocked for six with an unexpected diagnosis.

So a year on and my amazing Daughter has continued to inspire me with her strength, strong will and determination. She has dealt with all that has been thrown at her. She isn’t walking yet, but she is now weight-bearing, which a year ago was something she wasn’t able to do. Isabella is the reason for my blog and the reason I stand up, fight and speak up for her. She is my world. My amazing little girl, my special little ‘Monkey.’ xx

Good Night Sweetheart….

“Good Night Sweetheart well it’s time to go,

I hate to leave you but I really must go,

Good Night Sweetheart, Good Night.”

When I hear that song it always makes me think of the film Three Men a Little Lady. I love the way they place her in her cot and all three men look lovingly at her, as she lies there peacefully and blissfully asleep.

I absolutely love putting Isabella to bed and it isn’t because Isabella has driven me mad all day and I need a break. It is because at night, in the quiet moments in the dark, as she slowly sucks on her bottle and is falling asleep, she is in finally in control of her body.

You see in the day, Isabella’s body controls her. It is like she is trapped at times in her own body. She has her involuntary hand movement with her right hand, where 3 – 4 times a minute it rises up in the air distracting her from what ever activity she may be doing. For example if she is sitting (which she can manage very briefly for a few seconds) once her hand goes up she topples forward, as she no longer has the hand she was propping on for support.

Then there is her right hand which she bites when excited or frustrated. The only way to describe is, like she has been wired up wrong, so whenever she laughs, is happy or excited she bites her hand. It is hard as a parent to watch your child bite her hand and see her make it sore. She doesn’t draw blood, but it is red and sore looking nevertheless. She doesn’t cry it is just her very unusual way of expressing emotion, but one of the many things I would like her not to do. As a parent it is extremely difficult, as you don’t want your child to bite her hand, but something as simple and as loving as kissing her makes her do it. The more happy and excited she gets, the more frequently she bites and the same goes for when she is frustrated.

To add to this she has hypertonia in her arms. Hypertonia means high muscle tone. The high muscle tone in her arms means there is too much tension in the muscles at rest. The muscles are tight and tense even though they are not doing anything.

Her legs have variable tone, sometimes they are tight at other times they are floppy, but for the most part like her arms they are very tight. Her toes are usually curled and tense also. Throw into the mix an unexpected noise and her body borders on rigour mortis.

So you can imagine how nice it feels for Isabella (and me) when her arms are relaxed at bed time and no longer tense. Her legs laying gently over mine, not a tense muscle in sight, listening to her lullaby softly playing with her hand gently stroking my face, sucking gently on her bottle, with no involuntary hand movements or hand biting in sight.

Before she finally nods off she snuggles in close for a special bed time cuddle, head cwtched in close under mine, hands on my neck and face. Now I am able to give her lots of gentle kisses and cuddle her relaxed body. Like the song says, I hate to leave her as, I love this time of the day where she is relaxed and at peace. I lay her gentle body down in the cot and watch her sleep peacefully and blissfully….Mummy’s little Sweet Heart x

Everchanging times..

I think most people live their lives with the mindset and attitude of ‘That will never happen to me.’ I know that I did. It was not a deliberate way of thinking, it was the way I was. Nothing phased me or scared me. I guess it was an age thing too. I had seen things on the news and read about things in newspapers; sad stories about people dying in car accidents or having life threatening illnesses and conditions. These stories touched me and made me feel sad but they never worried me.

I was like most young people happy, worry and care free. I left home at 20 to become a Holiday Rep. During which time; I drank more than I ate. What I did eat would horrify any Dietician. I partied more than I slept. The sleep that I did get was usually was fully clothed in the previous nights attire or on the beach caked in tanning oil. On nights out I tottered around on 4 inch heels that crippled my feet and when the pain became all too much I removed them and would stomp around outside barefoot. I speedily rode my moped more times with my helmet off than on. When I did walk I would always hastily cross the road on red. I did all of this without a worry and a care in the world. It was fun. I didn’t see any danger.

Fast forward 12 years and I am Mother and suddenly I see danger. I see pontential danger everywhere. I am Mother who gave birth to a beautiful baby girl without any complications. I am a Mother who never once thought that the beautiful child I had would be severley disabled. So now I have tilted my view of the world slightly. I no longer think, that won’t happen to me or us as a family, because it might. That is not to say I am now a real pessimist and view everything as the glass half empty, as that is definitely not the case. I now just air on the side of caution and opt for the safer option.

I still party, just not every night! I am lucky if it is once a month! My sleep is no longer governed by me, my little monkey decides how much sleep she feels Mummy needs and for the most part it is a bit more than I used to get!

I try to eat more healthier, but think ‘Everything in Moderation’ is generally a good rule to live by. I no longer use tanning oil, instead lather myself up in Isabella’s 50+ sun screen! I no longer sun bathe, we just take strolls in the sunshine. If I feel I need to add a bit of colour to my life I will now fake it rather than going to a Sun Bed.

I most definitely no longer ride a moped and I am extremely careful in the car now that I have finally learnt to drive, with all speed restrictions adhered to.  I cross the road with extreme caution and never cross until I see the Green Man.

As a parent you have to change and see potentials dangers that are around you and your child. I have to choose the safer options to protect my family. To some the idea of no longer sun bathing or going out in the sun with 50+ protection sounds extreme, but thousands of people a year are diagnosed with skin cancer and I cannot afford to take such a risk.

My first thought now is no longer me it is Isabella and my family, so if something doesn’t look safe or isn’t quite right I/we avoid it. It may mean taking a little long to get somewhere, as we wait patiently for the Green Man or drive safely rather than speedily, but Isabella’s safety is our concern and my family’s safety is my concern. It chills me to the bone when I think about families that lose their child or a child that loses their parents.

It really is strange how things that happen in your life can change your view or outlook for the future. I know that the bronzed Crazy Tracey the Holiday Rep tearing around on her moped, hair flying wildly in the breeze, can of Red Bull in her bag, planning her night out in her head, with a raging hangover and only two hours sleep would never have thought that she would become so sensible. Well not THAT sensible, as I on my nights when I do party I still do totter round in 4 inch heels and yes admit to having to take my shoes off when the pain becomes too much, which I may add is much, much sooner than it used to be! Then more often than not I have been known to go to bed fully clothed like the old days, waking up looking like the newest member of Kiss! Some things NEVER change…

When the bubble bursts…

A few months back a SWAN Mum coined a phrase, that we grew to love. She said how she liked living in her ’bubble’ with her family.  Inside the bubble it was just her and her family, without any outside influences.

We love our living in our bubble too. Inside the bubble, it is warm, cosy and safe. Life inside our bubble suits us. It is just Isabella, Paul and I and of course our Dog Daisy. Inside our bubble, we know what Isabella cannot do, but we don’t dwell on it. We wholly embrace all that she is able to do and we give endless praise to achievements that may seem the smallest of things to an outsider.

Life inside our bubble is peaceful. We know each other’s boundaries and constraints. When it comes to Isabella we know what works and when it’s time to stop. We understand the many faces, the cries and the moans.

We have our routines and quirks, the things that work for us a family. We do things in certain ways because they work. We also do things in certain ways, because for the moment that is all we can do. We take things one step at a time, one day at a time. If it’s not right for us as a family or Isabella, then quite simply we don’t do it.

We float and bounce around in our bubble quite happily, until without warning it suddenly bursts. It is sometimes the smallest of things, something that may seem like nothing, but it bursts the bubble nonetheless. On occasion it may be something that we see. A good example of this was when we were hit with the flurry of snow in January. I saw children of all ages out playing in it. It was the children around Isabella’s age that I was somehow drawn to, watching them run around, throwing and dodging snowballs, being pulled on their sledges and making good old snowmen. I didn’t cry, it just caught me by surprise. You see I never give up hope and think one day who knows, how ever old, that could be Isabella.

Then other times the bubble may burst because of what we hear. Sometimes it was meant for our ears other times it is overheard. People naturally are drawn to children and very often they stop and speak to Isabella. It is usually her involuntary hand movement, (which actually looks like the Queen waving) that gets their attention, as they think Isabella is waving to them. They come over and say hello. They pause and wait for Isabella to reply, then ask her if she is shy. They pause again and ask her her name and smile at her waiting for a reply. Isabella smiles and looks to me and back to the stranger. I then tell them, ‘It’s Isabella.’ Now armed with her name they resume the conversation with Isabella and ask how old she is. I say, ‘You are 3 aren’t you Isabella’. At this point the conversation goes one of two ways, it either ends very awkwardly, very quickly when I explain the fact she is severely disabled and unable to talk. Or it gains their interest and sparks a number of questions; ‘Will she ever be able to walk or talk?’ ‘How did it happen?’ ‘Will she get better?’ and several other questions along the same lines. Like I always say I am happy to answer questions and raise people’s awareness on children with Rare Genetic Conditions. However there are days when these questions affect me more than most, days when I don’t want to answer them, days when hearing myself answer the questions makes me feel a little sad. These days, rare as they are, most definately take me by surprise and most definately burst my bubble.

On occasion we over hear things, a tut or cutting remark. They are not directed at us, but made clear that they were meant for us. The tuts are usually when Isabella is having a melt down and distressed and are usually followed by a comment on our poor parenting skills. Then on occasion it is an unintentional comment that can be cutting. It may be a simple phrase in one of Isabella’s groups, like, ‘Now that all your little ones are walking….’ Now I don’t expect anyone to give Isabella special treatment or draw attention to her, it is merely an example of how simply and unintentionally the bubble can burst.

How and when the bubble bursts can vary greatly. Sometimes I feel that our bubble and other bubbles like ours would burst less frequently if people were made more aware and understood that not all disabilities are visible at first. That there a variety of disabilities out there, some very, very rare and others that still remain undiagnosed. It is something that parents like me are constantly doing through sharing information on blogs like my own, organising fundraising events and talking to passers by when they ask questions. Even with more awareness and understanding from the general public, our bubbles will invariably always burst from time to time, as EVERYTHING around us has the potential to burst them. Some days they will side swipe us and pop the bubble with an almighty ‘bang’ other times the bubble will wobble a little but still continue to float along nicely. But each burst bubble makes us stronger and helps us prepare and deal with the next one….whenever that may be…

 

Bright Light City…

Elvis Presley once sang about Las Vegas,

“Bright light city gonna set my soul
Gonna set my soul on fire..”

Boy was he right. We love Vegas! This was our fifth visit to Las Vegas and it was Isabella’s first. With Isabella tucked up in bed, we decided to cuddle up, chill out and watch a movie on our 6 x 8 ft movie screen, with the bright lights of Vegas twinkling like diamonds in the background. Sadly it wasn’t to be. We learnt very quickly that travelling with a little person in tow and with no alcohol, it was virtually impossible to hold back the incredible wave of tiredness that had washed over us. We were in bed by 9pm – how Rock and Roll were we?

Now this is when our age and the fact we are parents probably shows. On most of the previous trips to Vegas, we didn’t see much of our beds or even remember how comfy they were (when we actually did sleep!) On this occasion we couldn’t wait to climb into our ginormous bed, accompanied with the sound effects of ‘aaaahh’, when the soft fluffy pillows and soft mattress made contact with our bodies. It was heaven. So much more comfortable than our bed back at home and with an amazing view to boot. We looked at each and then at Isabella and smiled, within minutes like Isabella we were both fast asleep.

We figured Isabella would be up early, with the time difference and jet lag, but we never figured it would be quite as early as 3 am! Funnily enough it didn’t bother me, we were on holiday! I was excited. Paul on the other hand, was not so excited to be awake at this hour, so Isabella and I let him sleep while we snuggled up and watched a movie. A movie snuggled in with my favorite little person in possibly the world’s most comfortable bed, made for a great start to the holiday.

Once the movie was finished, Paul was finally awake, how he slept through the movie and our giggles I’ll never know! We had massive morning family cuddle, in the hugely oversized bed; It was bliss. It may have been 5 in the morning, but we were on holiday. We were in Las Vegas and we had nowhere to be and no one to see, the time was ours, to do with what ever we pleased.

We were up and out of the hotel room and sat down for a good old american breakfast by 8am. Just the walk through the hotel had Isabella gazing in amazement. For those of you that haven’t been, it is like being outside, inside. Only with lots more lights and sparkle.

This was our view, as we tucked into our delicious pancakes. The breakfast was most welcome after we had spent all of the previous day travelling. Although Isabella and I had been up since 3, we were still going strong. Tummies full, we set off, ready for a day of exploring, it didn’t take long however for Isabella to give into the urge to sleep! and sleep she did…3 hours solid, something that never happens at home in the day!

On we strolled, Isabella fast asleep and Paul and I completely relaxed. Holiday Mode had definitely kicked in. It was refreshing to be able to walk outside, without needing an umbrella or a huge winter coat. It was fresh, but the sun was warm and there wasn’t a cloud in the sky.

As we were walking, we were talking. It was nice to be able to talk without the sound of a text message alert, or phone ringing or distraction from the TV. A lot of the time we were reminiscing, as we got married in Las Vegas and on our last stay I was actually pregnant with Isabella! So much had changed and at the same time lots had stayed the same. We decided to walk the length of the strip towards the infamous Vegas sign, the last time we had been there was on our wedding day.

We were hoping Isabella would be awake to see this fabulous landmark and have her picture taken, but she was fast asleep. We paid $2 for someone to take our picture. This annoyed me immensely as there was a sign that clearly stated no one should be loitering and working for tips. As much as she annoyed me, she actually took a bloody great photograph. It was perfect, well apart from Isabella being asleep!

Walking down Las Vegas Strip and sampling all of the delights with Isabella who had finally woken up from her 3 hour slumber, conjured up a lot of feelings. I had walked down the strip as a newly married woman, with my whole new life’s journey ahead of me. I had also walked down the strip with a tiny person inside me, stroking my bump lovingly. On both occasions I remember thinking it would be amazing to take this little person (Peanut) here and show them where Mummy and Daddy got married, knowing that they would love Vegas the same way we did. To watch their little eyes light up at this amazing, sparkling city where everything is supersized and magical. To listen to them ask questions about all the hundreds of wonderous sights, such as the Pyramids, the Eiffel Tower and the Bellagio Fountains that stood before them. To watch them walk around Circus Circus in awe and want to go on every single ride possible. I never once thought that when we finally did come back that our beautiful and amazing daughter would be unable to walk or talk.

That said we both know that Isabella may not have understood that Mummy and Daddy got married here, but she does understand happiness. She understood that being here together as a family made Mummy and Daddy happy, which in turn made Isabella happy. She may not have been able to talk and walk around and experience Las Vegas the way that we had dreamed, but just the look on her face when she saw the fountains at Bellagio, or the way she kicked her legs in excitement and actually watched the Clown at Circus Circus and the way she giggled in delight when we danced around with all the Christmas music and twinkling lights was worth it’s weight in gold. The 10 hour flight here and the anxiety and stress leading up to it had been worth it. Isabella in fact did love Vegas the way we had always thought she would.