A word from Monkey…

Hello Isabella here or Monkey, as Mummy and Daddy call me. Mummy thought it would be nice if I was a guest blogger on here. It’s only right since the blog is about me and I actually started blogging before Mummy http://allaboutpeanut.blogspot.co.uk/ take a look if you find the time. It’s all about my journey here.

Yesterday will most definitely go down as a very special day to treasure and remember. It was perfect, all except for Daddy not being here to share it with us.

Mummy already told you about the wonderful coverage SWAN UK received on the radio. It was funny watching her, as she was pulling strange faces and taking ages in between each spoonful of my breakfast. Now usually when she is on the phone she lets me speak, because it’s usually Daddy or someone I know on the other end. Yesterday however she didn’t put the phone near me, so I had to shout extra loud to make sure that they heard me; apparently they did!  After the interview it went a bit crazy in the house, the phone kept ringing and Mummy was acting more ditsy than normal. Luckily I had Auntie Helen and Auntie Gemma to play with me while Mummy, spoke on the phone and got ready for our WaterBabies lesson. Our special WaterBabies lesson was the whole reason behind the interview; the synchronised swim that me and my friends were taking part in. So let me tell you all about that.

We left the house much earlier than normal, as there was a big car crash near Oxford and Mummy didn’t want to miss our special event and neither did I. It was a good job that Mummy’s friends came to stay, as it meant Auntie Gemma could feed me my snack in the car. Mummy, as usual when we have someone in the car will talk endlessly and not let the person get a word in edgeways. I actually thought Mummy might be tired of speaking since she had spoken so much on the phone that morning already, but Auntie Gemma didn’t seem to mind. Maybe she just switches off, I think that is what Daddy does! He should learn though because Mummy will ask him what she said and not being able to talk sadly I cannot help him with right answer!

Anyway I am waffling, I don’t know where I get that from! So luckily we weren’t stuck in traffic. Mummy will tell you I hate being stationary in cars or my buggy so that saved Mummy’s ears. With plenty of time to spare we arrived and sat and waited for our exciting WaterBabies Olympic Games lesson. All my friends slowly arrived; Freddie, Marcie, Edie, Samuel and Gracie and just like me they couldn’t wait to get into the pool.

Finally after what seemed like an eternity we were in the pool cooling off, I tell you that changing room is like a sauna. Poor Mummy thought she was going to faint. She kept saying she was getting hot flushes. Well someone who most definitely would be getting hot was our swimming instructor. She was fab and got into the spirit of the WaterBabies Games by wearing a huge Union Jack Wig, it looked very itchy and warm. You never would have guessed it though, as she was smiling the whole time like always.

She kicked off the lesson with ‘Here we go round the swimming pool.’ We go around the pool and warm up and get used to the water. Then she chose me to do the first ‘1,2,3 swim’, this is where I swim to Mummy on the surface of the water. Mummy was very pleased with me, I did lots of kicking and did very well.

I felt like a celebrity, as I had Auntie Helen and Auntie Gemma watching me and  taking pictures. Saz from Waterbabies had a big swish camera and was taking lots of pictures too! I am never one to shy away from having my picture taken, when I saw a camera pointing in my direction I made sure I gave my biggest and bestest smile. Then there was another lady dressed in bright pink I had never met before, but she looked familiar, as I had seen her on Mummy’s laptop.

We then did lots of fun things we did a special Olympic Wheels on the bus, where we kicked, rowed and jumped up high. We then had lots of splishy splashy fun doing lots of different activities; we chased our balls using our woggles in bit of water polo, did some diving underwater, some water archery where we threw a duck through a hoop, and we did some rowing on our big jelly mat. I did all of these as always with my Mummy’s help. My friends all did the high jump where they ran across the mat and ‘jumped’ into the water. I did the low jump and did a big roll into the pool with a big splash, which made Mummy wet!

I know you are all waiting to hear about the synchronised swim, so I won’t keep you waiting any longer. When Mummy heard we were about to do it, it looked like she was going to cry. Her eyes welled up, but it was okay because she gave me a big squeeze and kiss and the tears went away as quickly as they had come.

For the synchronised swim we did the ‘Grand Old Duke of York’ and we all went under water at the exact same time with our Mummies and Nannies, we turned around in the water (with some help) and came back up to the surface. It was great fun! We all came up smiling and proud, we had done it! Mummy gave me the biggest cuddle and the biggest hooray. I was so happy I had made her proud. I looked around and the cameras were clicking away and everyone was smiling.

At the end of lesson it was great because we got a certificate and a medal. It was the first medal any of us had ever got, it was a very special moment. We had a lovely group photo taken. Mummy and I were very pleased about this, as two of my friends (Freddie and Samuel) won’t be coming back next term, so at least we will have a photo to remember them by.

When we got out the pool Mummy introduced me to the familiar looking lady dressed in pink. The lady was Lauren from SWAN UK. She didn’t mind that I was wet and she gave me a big kiss and said she was very proud of Mummy and I. Mummy once again looked like she was going to cry. She has been a lot this recently. I think she will have a big cry when Daddy comes home. I know she has missed him, as much as I have. It has been a big week for us both and it would have been brilliant if Daddy was here, but nevermind we only have to wait two more days.

We made our way into the changing room and Mummy got us both dressed and dried. I was exhausted and was very much looking forward to lunch. It turned out I would have to wait a bit longer, as we were told that we had to get back into our costumes and get back into the pool! The photographer from the local newspaper had turned up and wanted photos of us in the pool. Since I was having such a lovely day, I didn’t mind, although I must admit it wasn’t nice putting on a cold wet costume, but I was a big girl and didn’t cry.

We went back out poolside and the photographer took lots of pictures of Mummy and I. Even Lauren from SWAN who didn’t have costume with her, bought one and joined us in the pool for a photo. We had a quick splash about before the photographer told us he had the photos he needed. We got changed for the second time and I finally got to tuck into my lunch, while Mummy chewed Lauren’s ears off!

So that was it, the big event we had waited for was now over. But what a success! Our story made it on the radio, it will feature in the local paper and more importantly to date thanks to YOU we have raised £400 and as a combined total over £2600 for our charity SWAN UK.

Mummy and I would like to thank Waterbabies for choosing to sponsor SWAN UK and you lovely people for supporting us with your kind words and generous donations. For those of you who would like to donate our fundraising page is open until the 26th August.

http://uk.virginmoneygiving.com/team/IsabellaMummysynchronisedswimforSWAN

As Mummy promised some photos of our special day.

Looking for those all important cameras…

Me with my medal..waiting for my lunch xx

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I heard it on the radio…

Who would have thought that just a few weeks ago I was yearning for people to become aware of SWAN UK and the thousands of children that currently remain undiagnosed with a genetic condition and today I got my wish. Today I went on live local radio and shared our little SWAN’s story!

As promised I received a phone call just after 7 am. It was the producer of BBC Radio Oxford. I had been awake since 5 as my excitement (and nerves) woke me up early. When the phone rang I ran furiously towards it, shouting ‘Oh my goodness, oh my goodness.’ I was very thankful it was a phone interview as I was most definitely NOT sporting my best look! I grabbed the phone shaking and said ‘Hello’. Just like the friendly voice I had spoken to yesterday the voice on the end of the phone was equally as friendly. She asked me if I was ready to speak to Phil. I swallowed hard, trying to stop the quivering in my voice. ‘Yes.’ She explained that he would play back the edited piece that was recorded yesterday and then I would speak to Phil, Live on Air. I am a little odd, as I always think of funny things at the most inconvenient times. She said she would ‘patch’ me through. All I could think about was Jack Bauer from 24 and the CTU phone ring!

Standing with the phone in one hand and Isabella’s breakfast in the other, I sat down at the breakfast table, tentatively waiting. Isabella was looking at me, as if to say seriously how long does it take to make some Weetabix and banana. I began feeding her, whilst listening to Phil Gayle introduce our story. Hearing mine and Isabella’s name on the radio was very strange indeed. Isabella was chatting away to me in her own little way, no doubt asking me why I was pulling such strange faces and taking so long in-between each mouthful.

The strange face pulling was due to a mixture of emotions on realising this was it. I badly wanted to be heard and now thousands of people were listening. Listening at home in their beds, listening at work, listening in their cars, listening to me; I was listening to me. This made me smile but then at one point I thought I might cry. I swallowed hard and pushed back my tears. ‘You can do this.’ I told myself.

‘Good Morning Tracey.’ In the split second before I replied I said to myself, ‘Okay are you ready? Relax, breathe and whatever you do woman speak slowly and please don’t waffle.’ Hoping I would heed my own advice I started to speak:

http://audioboo.fm/Monkeys_Jungle

(I am not the best person when it comes to technology. I am a ‘Techno Biffo’, but hopefully if you click on the link or copy and paste it into your browser it will play the whole interview in two parts.)

When the phone conversation ended I felt overjoyed. I had done it, done what I had set out to do, I had got the SWAN name out there. Only now I wanted to know if I had made an okay job of it. Had I spoken too fast? Had I waffled? Was I clear? All these questions were immediately answered by my friends who had been listening in Isabella’s bedroom and the calls I immediately received from friends and family. Everyone told me that I had done a good job and that they were proud. No one likes to hear their own voice and I certainly don’t like the sound of mine. I have also realised that I have a tendency to say ‘ya know’ and ‘kinda’, I wasn’t aware of that whoops! But I could sit here and nit pick my strange little quirks I never knew I had when talking, but I won’t. I will just say I am over the moon with be given the opportunity to tell people about SWAN, Isabella and the Waterbabies Sponsored Swim. I am sitting here proudly knowing that I have made my husband, Family, Waterbabies and SWAN family proud 🙂

I would like to dedicate this post and say a huge THANK YOU to Lauren Roberts from SWAN, Saz, Liz and all the WaterBabies Team and Barry, Sarah, Phil and all the BBC Oxford Radio team for making it all possible.

Radio Gaa Gaa….

As I write this post my stomach is doing flip-flops, this could be due to nerves and excitement or the amount of Sweet Chilli Sensation crisps I have consumed due to my nerves and excitement.

Today I received a call from a BBC Radio Oxford, I had been forewarned that they would call, as they were extremely interested in covering the Sponsored Synchronised Swim for SWAN. Typically I received the call at the wrong time, whilst at the petrol station, so I frantically answered the phone and put it on speaker whilst shouting at the friendly voice that they would have to call me back,as the Attendant was looking at me very sternly.

I have always been told that I speak a) too fast and b) too much. My Grandad would agree with statement a) and my husband Paul would most definitely agree with statement b. With this in mind whilst driving back and thinking about the impending phone call I was subconsciously telling myself to speak slowly and not to waffle. This is easier said than done!

The very friendly Irish voice called me back and told me that he wanted to know more about Isabella, SWAN UK and Waterbabies. Taking a deep breath I talked about my favourite topic; my beautiful SWAN Isabella. The friendly voice sounded genuinely interested and wanted to meet us both and interview me at home. He also invited me to appear on air live tomorrow at 7am, along with the Owner of Waterbabies and the SWAN Co -ordinator.

The interview was very surreal. We have had a lot of people in and out of the house visiting Isabella, but never anyone from the media. He was very friendly and made me relax, even Isabella felt relaxed and had something to say. So taking my time I told him all about the different stages we went through from knowing there was a problem to Isabella becoming a SWAN. I also told him about the wonderful support we had received from both SWAN and WaterBabies alike.

It’s funny the amount of times I have told the story and I still find myself listening to it and reliving it. I am sure sometimes strangers we meet in the street wish they had never asked.  I don’t intend to tell people the long version, but sometimes it is hard to shorten it. It usually goes something like this.

An initial friendly interaction with Isabella; perhaps asking her name or how old she is, the person waiting for a reply or following on with asking Isabella if she is shy. I then follow on with;

‘Isabella is severely disabled, she is 2 and cannot walk or talk or do anything for herself.’

‘What is wrong with her?’

‘We don’t know.’

‘You don’t know?!’

and so it continues with me explaining the numerous tests that she has had that have all come back normal. Leaving us and the medical professional puzzled. Then I go on to explain about SWAN and the fact that Isabella is not alone and that there are thousands of children like her.

I guess that is why I am both excited and nervous about tomorrow. I want people to understand that not everything is black and white, or clear-cut. That not everything has a label and can be put in a box, but if they do need a label I can say Isabella is a SWAN and they will understand and recognise the term. I am obviously nervous, as I don’t want to waste this wonderful opportunity of giving people an insight into our lives with Isabella as a SWAN and what SWAN means to us. I also want people to know how grateful we are to WaterBabies for making it possible. Without their idea of sponsoring SWAN I would certainly not have been interviewed by BBC Radio Oxford and given this chance. I really hope the message gets across  clearly and perhaps not only will it raise much-needed awareness, it may even help other families like us find SWAN UK.

The interview will be on from around 7am tomorrow (26th July) on BBC Radio Oxford  http://www.bbc.co.uk/programmes/p00vxcc8

If you are unable to tune in you can catch it on i Player all day.

SWAN song…

When you pass our little girl by,

Please don’t stare,

Just show some respect,

I am not asking you to care,

 

You can ask me questions,

I promise not to bite,

But if you continue to stare,

Then I just might,

 

I will tell you that,

My little girl is SWAN,

There are thousands like her,

She is not the only one.

 

SWAN means;

Syndrome Without a Name,

But no two SWANS,

Are the exactly the same,

 

We have had tests done,

The doctors can’t be sure,

And without a diagnosis,

There is certainly no cure,

 

She cannot walk or talk,

Or hold her own toys,

And easily is spooked,

When she hears a sudden noise,

 

She cannot crawl,

Or even sit or stand,

So she needs a lot of help,

and a caring hand.

 

She can communicate,

with her body and eyes,

and makes different sounds,

which is no surprise,

 

She can really roll,

And loves it on her tummy,

And has a unique way,

Of reaching her Mummy,

 

Isabella cannot feed herself,

or even hold her cup,

But she is determined,

and never gives up,

 

When you see us SWANs,

Out and about,

We may lose control,

And cry and shout,

 

This is not because,

We are naughty or bad,

And when our parents hear this,

It makes them feel sad,

 

There are certain situations,

That SWANs find tough,

It is their way of saying,

That they’ve had enough.

 

So next time you see a child,

behaving in a different way,

remember they may be disabled,

before you have your say.

Let me count the ways in which you frustrate me…

I have had this title sitting in my head for a while, finally it moved into my draft box and today a fellow SWAN Mummy inspired me to write it, as she had compliled a very similar list of her own.

You see I am always thinking, re-thinking, analysing, sometimes worrying, occasionly stressing and always making plans in my head. I find myself doing this whenever I have a spare minute (which isn’t all that often) Even as I sit here furiously typing away (so I don’t forget what I want to say) I have a dog sitting in front of me wondering where her dinner is, willing me with her eyes to go to the kitchen already and make it. I have washing in the machine screaming to be hung up to avoid being anymore wrinkly than it already is, guess that means I will have to iron this lot – darn! Pots and pans in the sink soaking and wondering if they will see the light of day again and a million other things that will just have to wait, just for a few more minutes. Just so I can get these thoughts out, before I forget them and they vanish to my version of Room 101 – good ideas that were sadly forgotten, never to be seen again.

Now that I write a blog all my thinking, re-thinking, analysing, worrying, stressing has a purpose. I now have somewhere I can put them, sort them out, sift through them and generally feel better about them. The difference is now I find myself, as well as this list, thinking of titles and posts, asking myself questions, What is appropriate? Will people find it interesting? Will they be bothered? Will I offend people? Then I find myself going with my gut, thinking about how writing the posts make me feel and if they have an impact and make a change then all the better.

So you may have guessed from the title I will be sharing with you some of my pet hates that I encounter on a daily basis. The ‘you’ is some of the general public, professionals and eventhough it saddens me to say it, some of my family and friends.

So here goes it frustrates me…

When you say, ‘There is nothing wrong with her, I mean look at her..’

This offends me greatly. Strangers who have never met Isabella can be forgiven, as her disbabilties are not noticeable at first. But people who know better say this. May be they are in denial (which is not at all helpful) may be they think it is what I want to hear – I can assure you it is not.

When you make Goo Gaa noises and coo to Isabella like she is a baby…

Isabella physically has been placed at the approximate age of a 4/5 month old, but she is cognitively much closer to her chronological age of 2. Isabella loves when you talk to her, the same way you talk to any two year old. Isabella will happily listen, laugh and respond in her own way. Sing to her and she will think you are the best thing since sliced bread.

The way you hold her like a bomb that is about to explode..

Isabella needs to feel safe and secure when you hold her. If you hold her with confidence she will fidget less and will be much easier to hold. Having said that she feels a lot heavier than an average 2 year old, as she doesn’t bare any of her own weight.

The way you look at her with teary eyes and cuddle her like it’s her last cuddle..

Isabella doesn’t understand when you cry. Isabella doesn’t need your sympathy she needs your support. She can breath, eat, drink, laugh and is very happy. So please don’t feel sorry for her.

When you say, ‘Oh she still takes naps in the day?’

Yes she does. It takes a lot of effort and energy for Isabella to do things. Although she is not walking, her body works very hard all of the time. She has an hour of physio a day, goes swimming, goes to groups and is constantly trying to sit up, practices standing and pushes up on her tummy. She does all of this as well as digesting and taking in everything around her. So it is no wonder she needs a nap to recharge her batteries.

When you say, ‘She is such a Mummy’s girl!’

Yes she is. We are very close. I am her Full Time Carer and understand her inside and out and she knows this. She feels safe and secure with me and in new situations will look to me for reassurance.

When you say, ‘She doesn’t like me!’

This is not true nor particularly helpful. Isabella needs time when adjusting to new people, or people she hasn’t seen for a while. She will go to you, just give her time and space. Remember if she was walking rather than cry and get upset, she would probably walk away and find some toys to play with and come back to you when she was ready.

When you continually rock her and cuddle her like a baby..

Isabella is not a baby. She loves to dance in your arms to music. She loves to be on the floor interacting with you. Put her on her tummy and she will roll over. Sit her between your legs and play with her she will reach for toys, but will need your help in holding them.

The way you stare…

If you have a question I would rather you ask. It is not enjoyable having eyes boring into you and it is not very polite. It makes me feel uncomfortable and as time goes on Isabella will begin to notice it too.

So there I have given you an insight into some of the things that frustrate and sometimes upset me. These things don’t all happen, all of the time, but I can assure it is not pleasant when they do. This list isn’t typical of everyone, we do have good experiences and in general people handle Isabella and her condition very well. I just felt a lot of empathy for my fellow SWAN Mummy when I read her list and thought it may be useful to share mine too…

Here is the link to the post that inspired me to finish writing mine. It is a new blog by a lovely fellow SWAN Mummy.

http://stressedbutsurviving.wordpress.com/2012/07/16/20-things-not-to-say-about-my-son/

Alice in Wonderland..

In the story Alice In Wonderland, Alice follows a White Rabbit down a rabbit hole and falls into a curious hall with many doors. I sometimes think our situation with Isabella and living without a diagnosis is in many ways like this fictional tale. Alice could be myself and Paul and the White Rabbit could be Isabella’s medical condition. Now Paul and myself could have sat on that riverside and not worried about the White Rabbit but curiosity and the love of our Daughter got the better of us. So we followed the White Rabbit into the rabbit hole and fell a long way. We fell at varying speeds, but we landed together with a bump.

We have been in the curious hall a while now and we have been through several doors of varying sizes.  The door which led to the MRI Scan, while it was painful getting in through the door, it led to nothing, except another door through to another MRI Scan. We have been given a leave pass for the waiting room. We are trying our hardest to be patient.

A few months ago we got through a large door which led to the Neurologist’s room and this room changed everything. He gave us some pointers on which doors to try next. He knew that some would more than likely lead to nothing, but he didn’t want us to miss anything along the way.

So on his advice we went through a large door which led through to a Lumbar Puncture room. It was an awkward door to get into and not very pleasant once we were inside the room. After waiting very patiently for what seemed like an eternity in the waiting room it too led to nothing and proved fruitless.

We then went through a door which led to the El Dopa room. There was a medical package in there for Isabella. It read ‘Eat Me’. So she did, but nothing happened.

Continuing down the hall we also went through a very small door, which no one likes to go through. It led through to the Rett’s test. Thankfully after an extremely nervous wait we came back out into the same hall. We were aware that if the Rett’s test would have come back positive it would have led through to a different hall with a whole new set of doors.

Back in the hall once again, we tried several door handles on different doors of varying sizes that led us through doors to varying blood test rooms. No sooner had we got through the different doors we were sent back out again. There apparently was nothing for us in these rooms either.

We have seemed to be wandering aimlessly down this hall for a long time now. Some door handles we try won’t budge, they are stuck, so we have to wander even further down the hall until we find doors that we can open.

We managed to negotiate the door to get into the EEG room. It was a bit tricky getting in and sadly we weren’t entirely prepared for what was inside the room, so we have to go back in a later date. On the upside at least the next time we go back in we know what to expect. We just have to hope we can find the door again.

Recently we got into the Geneticist’s room. It took some time and annoyingly we had to go back into rooms we had already been in. That was frustrating, as it took lots of time and time, as we all know is precious. Still nonetheless we are in the room now.  It seems vibrant in here, a bit more colourful. Not as dark and dreary as the other rooms we have been in. The mood in here is brighter, more positive. The Geneticist understands why we want to follow the White Rabbit. She understands by getting to know the White Rabbit we will know what we are up against.

Unlike the people we have met in the other rooms she has given us a map. She has made things clearer, explained The White Rabbit can be tricky to track down but she will do her best to help us..

So here we are back in the hall with our map and we have now found the doors to genetics testing. We are currently sat in the waiting room, again trying to be patient. We have popped back to the MRI scan room and results aren’t in, so we continue to wait. This White Rabbit is most certainly elusive and we may never find him..but we will still continue to wait and we will keep trying doors until we do..

Read all about it..

It’s funny how things can change so quickly. A few months ago it felt like SWAN was barely on the radar, no one seemed to have heard of it. Since then there have been articles in the National papers The Sun and The Daily Mail, stories on local news and in local news letters and more recently for us the offer of a sponsored swim at our local Water Babies group.

The e mail about the sponsored syncronised swim was only sent yesterday evening, but since setting up our fundraising page to date we have already raised £125 which has astounded me.

To add to this there was also lots of excited chatter in the changing room today. All of Isabella’s waterbabies parents/grandparents were geniunely happy and made up, that Isabella and her SWAN friends have been thought of. They are very keen to spread the word amongst their own friends and family and try to raise lots of money and awareness. So again for the second time in as many days I have felt choked and quite overwhelmed by it all.

On the subject on awareness another Mum was in the changing room, changing from the previous class. She joined in on the conversation and asked how the sponsorship came about. I told her that they telephoned and asked what charity we would like to sponsor. She then went onto say that Water Babies sponsored her husband when he swam the channel for FootSteps Centre in Dorchester. Although I had never heard of it Footsteps is a rehabilitation centre for children with neurological disorders. Very soon I learnt her little boy went there. She then explained that he had several tests done and that the Doctors weren’t sure what was causing his developmental delay. This began to sound all too familiar. The Doctors told her that it was more than likely Cerebral Palsy, but they couldn’t be sure since the tests had come back normal. I couldn’t believe what I was hearing, a lady who I had seen in passing over the last two years and knew just to say hello and give a friendly smile also had a SWAN. I asked her if she had her of SWAN before and she said she hadn’t until she had read about it in the e mail.

I stood there excited at the prospect that because of Water Babies decision to sponsor SWAN another family could enjoy the benefits of being part of such a wonderful family. The other parents and Grandparents looked on in amazement -they couldn’t believe it either. I told her how amazing the group was and how we supported each other and her face told a thousand words. I could see that she was pleased that she had now found a group where people would truly understand how she feels.  Her journey that she thought had ended, as she had come to a dead end would now continue. It still may not give her any new answers, but it will give her all the love, hope, support and encouragement in the world.

 

Synchronised Swimming for SWAN UK

Today I read an e mail and got a little choked. It was an e mail from Water Babies about a synchronised Swimming event that we would be taking in part in. A few weeks back Izzy’s swimming instructor telephoned out of the blue and asked us which charity given the choice would we like money given to. The answer was easy SWAN UK. She said she couldn’t promise anything but would get back to us. A week later the Co -Ordinator of SWAN UK confirmed Water Babies would be raising money and swimming for SWAN. I was delighted and over the moon, word was finally getting out. So today when I saw it in black and white I had to choke back the tears, for three reasons. Firstly I never thought I would be doing anything for a charity that my child belonged to, secondly because SWAN is finally starting to get the recognition it deserves and thirdly because the e mail said that the charity was close to their hearts because their very own Water Baby was a SWAN. Sheesh emotions all over the place I tell you.

Isabella and I along with her Water Babies will be doing a synchronised swim in keeping with the forthcoming Olympics. Isabella and her friends are all very experienced underwater swimmers, they all went under for the first time back in September 2010 when they were all around 4 and 5 months old. There were several responses we were told that they could have, laugh, be unphased, smile, cry a little or scream the house down. Well Isabella screamed the house down, but after a couple more times and lots more practice in the bath with her ‘Isabella, Ready, Go’ command she soon too was unphased by it all. Now in fact she is such a pro she laughs when she comes up from under the water.

Isabella is a genuine Water Baby. There are not many things that Isabella can enjoy without her difficulties getting in the way. With swimming however she feels weightless and can kick and splash around. She doesn’t need a special chair or standing frame and she needs very little support from me, she is almost free. She will move across and under the water on her own, all be it a short distance but she is independent nonetheless.

She truly the loves the water and laughs and giggles when she is in it. As a parent it is amazing to see how happy the water makes her and how excited she gets when she knows we are going swimming. For that reason I try to take her everyday to our local swimming pool. I pack our Water Babies swimbag with the all important ‘Bubba’ the float and the ‘woggle’. Other parents in the pool must think I mad when I start singing the ‘Wheels on the Bus’ and wander around the pool doing our Water Baby actions! I try to recreate our Water Babies lessons so Isabella can practice her water and safety skills. There are floats and woggles at the pool but we bring our own for familiarity for Isabella.

Taking her swimming regularly is not only good for her happiness and well-being it is also good for her physically. As Isabella isn’t mobile we have to do physio exercises everyday to keep her supple and from seizing up. Swimming as everyone knows is good as it exercises all of your body and therefore it is good therapy for all of her body.

It is amazing to think how far Isabella has come in the water. Her little legs kick frantically now and she is desperately trying to use her arms. She has no fear when she is dropped in from the poolside or when she dives in and she isn’t phased by going under the water or water splashing in her face. We don’t know if Isabella will ever be able to walk unaided, if at all, but there is a very good chance of her being able to swim independently.

I will finish this blog by shamelessly adding the link to our sponsorship page. I know times are hard and there are lots of worthy charities out there, but any donations however small will be greatly appreciated.

www.virginmoneygiving.com/team/IsabellaMummysynchronisedswimforSWAN

You are so beautiful to me..

Every parent thinks their child is beautiful and amazing and I am no different. People always tell me how beautiful Isabella is and yes to look at she is 100 % perfection. I could look at her for hours; her perfectly shiny blonde hair, her amazing blue eyes that twinkle in the light, her cute button nose and her captivating smile with her whiter than white teeth. There is more however to Isabella than just her beauty on the outside.  I think she is truly beautiful from the inside out.

Isabella has so many obstacles that stand in her way and stop her doing what she really wants – yet she is always happy and always smiling.

She has to watch other children (and adults) do what she is unable to, this doesn’t phase her she just perseveres with what she can do.

She has to see several different people at hospital and at home who poke and prod her and watch and assess her. She doesn’t like it and she may cry, but she lets them get on and do what they need to do.

She has had to wake up several times in a strange hospital bed after being put under general anesthetic or sedation. She has looked around anxiously for familiarity, but that the anxiety soon subsides when she catches a glimpse of Mummy. She happily comes straight into my arms, smiles, relaxes and goes back to sleep.

She has strangers stop in the street to talk to her. She can be nervous around strangers, so looks to me for reassurance, and when she finds it she smiles right back at the stranger.

She has to have Mummy and Daddy help her to do everything, but rather than just lie back and let us to all the work, she is trying her best to help where she can. For example most recently in the last few weeks she has started grabbing the spoon again(she used to be able to hold it) and with my hand over hers she is helping to feed herself.

Her beauty shines through in her spirit, strength and determination.

The famous love song, ‘You are so beautiful to me’, says it all..

You are so beautiful To me,

You are so beautiful To me,

Can’t you see,

You’re everything I hoped for,

You’re everything I need,

You are so beautiful To me.

We are family..

On the 8th March (a year and a day to the day I left the pediatrician’s office ) I had another eventful day in my life. It was the day I joined the SWAN Facebook group. I didn’t know then how important it would be to me and how much it would change my life. Nearly four months on and I feel I have found a second family, a virtual home, a shelter, a place where I can say what I feel and I am completely understood. It is my special place – my little hideaway. Let me tell you more about it so get the picture.

It is a place where you can cry, rant, vent and scream (virtually) and no one thinks you are nuts. A place where can laugh, cry with joy, celebrate and embrace your SWAN’s successes (however small) and you are instantly surrounded by virtual hugs and good wishes.

It is a place where you can ask questions and feel safe in the knowledge no one will think you are strange or silly for asking. Instead you get what you need – answers and a multitude of them at that. Genuine answers, detailed answers, answers from experience, answers from knowledgable experts – namely SWAN Parents.

It is a place where you can make suggestions and recommendations, so other parents can benefit from your experience, in anything from medical appointments, to medical equipment.

It is a place where you can upload videos or photos of your SWAN and have others share in their success, similarly you can share in other SWAN’s achievements. There is nothing more rewarding than someone posting a video of a SWAN walking, when it was thought that they never would. The feeling is indescribable and a warm fuzzy feeling of pride and hope tingle through your body.

It is a place you can come to when you feel no-one is listening and you feel like you are getting nowhere. No sooner have you posted a comment on the wall, a notification will pop up instantly to say that someone has replied. That person will remind you with their kind and caring words that you are not alone and that there is always someone here to listen. You could almost say that there was 24/7 service on the group as, some of our little SWANS wake in the night due to night sweat, night terrors, restlessness or any other number of reasons. So there is always someone on the night shift! However in some cases it is nothing to do with our SWANS, it is just that we the parents are unable to sleep – usually because of the million and one things we have going on inside our heads.

It is a place where you can come to after a long , exhausting day and relax. You can check in on your friends and see how they are doing. There is always someone celebrating in one way of another, there is always someone who needs a pick-me-up and there are all the bits inbetween from new members to new posts on people’s blogs.

When it comes to the SWAN group I feel like I belong and I feel extremely supported and know that even though some of my fellow SWAN parents live miles away they would be there for me, even if it is just virtually and I would do exactly the same.

If anyone reading this has a child without a diagnosis, you need to become a member of SWAN. I promise it is the one of the best things that you will ever do. Our group is constantly growing and the support we give each other is incredible.

So there it is, that is why my special place is so special to me. I love being a member of the SWAN family. We are family…our SWANS bought us together and our unity made us friends…