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…

 

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‘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

 

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‘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.

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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…..

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