Two words that mean so much…

In the past few months I have dedicated posts to a special SWAN Mummy, my parents and my husband and thanked them for their love and support.  My brain is constantly thinking of posts that I can publish. I have lots that are just sitting in my draft box waiting to be finished and set free. But they are going to have to wait a little bit longer, as today I want to dedicate my posts to YOU the people who read my posts and encourage me to write more.

In the past two days the number of followers has increased rapidly. I know that I sent the link to you lovely people, but I have been truly overwhelmed by the interest you have shown in our story. Your kind words and offers of support in spreading awareness have been astounding. I have sat here the last two nights feeling a little bit emotional (if I am honest) by all your beautiful words and messages. It is truly amazing how these words have lifted themselves off my screen and touched my heart. Sorry a little bit gushy, but it is true. I know that in this day and age we are busy rushing around and find very little time to sit and take time out. So I feel flattered that you took your precious time and chose to read about our story.

Some of you have posted your comments on here directly and others have messaged me. I just want to share some of the beautiful comments you have made..

..’just read your blog……..cant believe all you have been through…….from ur pictures you seem to have a very happy little girl with amazing parents! hope you all get some answers very soon xx’

‘thank you for sharing your story of your beautiful baby girl. I have never heard of such symptoms and not finding an answer so What you have been through must have been very scary, how wonderful that Isabella has such wonderful parents and I’m sure supportive family too. All your pictures show how happy she is. I will certainly be reading your blogs and will be thinking of Isabella and you when she goes for her 2nd MRI. Fingers crossed that you will get the answers you deserve. Anything I can do to help and raise awareness you just say! Xxxx’

I too would have been unaware of isabella’s condition, she is a gorgeous little girl, happy smiley little swan x i am totally shocked that her condition is undiagnosed. If there is anything I can do to help please let me know x x x’

You are such an inspiration!!! Xxx

‘Hearing your story really tugged at my heart strings, Isabelle looks so happy in the pictures you post in FB. I hope one day you get the answers but in the meantime spreading the word to everyone and getting support no matter how little hopefully will help.’  

‘I would have had no idea Isabella had an undiagnosed condition. She is such a beautiful little girl, on all of your photos she just looks so happy and loved.  Me and my girls want to send you lots of love and to Isabella and all the other little swans we hope that answers aren’t too far away xxx’

‘Hunny, heart breaking to read your story, I would never have known that there was anything wrong with your princess from following her life over the last months on facebook. I have another friend who has a very poorly baby and we believe that these children are only given to special people. You my love, are one of these, and Isabella could not have wished for a more perfect mummy, stay strong and positive and enjoy every minuite of your little angel xxxx’

 ‘I am very sorry to hear about Isabella’s condition. I had no idea she always looks so happy and well in your pics and you are always so positive in your posts. I hope that the doctors will find a cure for her. I admire your strength it must very hard for you and Paul. Thinking about you all and big hugs to Isabella xxx’

‘Thank you so much for your message and the link to your blog. I think your blog is amazing and read through all of it. I had no knowledge of SWANS, and appreciate you sharing. I think your daughter is very lucky to have such a great Mummy and she can be certain you will work just as hard as her. I can also hear in the blogs what a lucky Mummy you are to have such a fab smiley gorgeous girl and what happiness, as all our kiddies do, she brings. I hope one day the system provides what it should without so much of a fight and energy having to be used, but mostly hope it just provides you with what it should! Thanks again for sharing and if we can ever help with raising awareness over in our region, me and my own two monkeys would love to help.’

‘Thanks for sharing this!and will continue 2 read ur blogs!I hope u get some more answers!xxx’

‘I had no idea that you were going through this!  The fact that your photos show such a beautiful smiling face (yours and Isabella’s!) proves what an amazing job you and Paul are doing.  Clearly Isabella is very lucky to have been born into such a wonderful family and I really hope that you get some answers soon so you know which direction to go in next. As mummy reading your blog has really moved me and I hope you will keep us updated with any news and progress.  If there is anything that I can do to help raise awareness or support you in any other way, please just let me know. Sending you all lots of love xxx ‘

‘The blog is heart wrenching and I think you and Paul. And Isabella are so brave – you see so many people winging on here and you are never one of them – and I love haring the updates. Funny how people go their own separate ways but no matter what, nice people will always be nice, and always care – no matter how much we may all have changed I will certainly support SWAN and I wish you all the best of luck with the MRI scan. I know you have loads of friends around you, but If you do need anything get in touch.’

I read your blog and it made me very emotional. It must have been very hard for you to share this with everyone. Isabella looks like she is a very happy little girl, but it must be so hard for you and your husband not having a diagnosis. She can’t have asked for a better mummy though as you are such a lovely positive person. It can not be easy though as being a military wife is not easy, especially when they are away. I will have everything crossed for you all when you go back for further tests and you are all in my thoughts. Hopefully one day the girls and I will see you at the Cotswold Wildlife Park. The park is such a lovely day out for little ones. If there is anything I can do whatever it may be, just let me know. Sending much love to you and the gorgeous Isabella x x

So you can see why I have been a little bit overwhelmed and emotional. It didn’t stop there however, I had my blog shared on your own Facebook pages and an offer of a sponsored walk in aid of SWAN. Which got me to thinking about what we could do to raise awareness nationally. I have been in touch with the SWAN Co-Ordinator and talks are now in place about what we can do. From many of the comments made you all seem very keen to help, so watch this space…

So I would like to finish this feel good post by once again using two words that mean so much- ‘Thank You’. I want to thank each one and everyone of you personally for taking the time to read, comment and share my blog. Some of you have been here from the start and your comments encouraged me to write more and I am glad I did.

“Our most difficult task as a friend is to offer understanding when we don’t understand.” You all have offered understanding beautifully.

In years to come hopefully I will be able to share this with Isabella and she will understand how supportive and nice people can be, in a world where there is sadly ignorance and hate….

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Lost for words….

Being the non stop chatter box that I am, I am rarely lost for words. Since having Isabella and finding (or not finding out as the case may be) about her condition I find my myself constantly in situations where people we meet on hearing about her condition are lost for words.

It is a natural thing for strangers when they see a baby or toddler smiling away to make conversation with them or the parents. I found myself in one of these typical situations a few months ago. I was waiting for a table in Frankie and Benny’s. Those of you who know me well, know that I love my food and love Frankie and Benny’s. Maybe a bit of shameless name dropping will get me some discount (just kidding!) The lady waiting in the queue behind me asked how old Isabella was, I told her she was nearly two. She pointed excitedly at her daughter and said. ‘Oh the same as my little girl, I bet now that she is running around she is keeping you on your toes!’ Bam there it was, the moment when I could feel the situation becoming slightly awkward. ‘Well she keeps me on my toes but she is not walking yet, she has special needs, you see.’ Before I could continue Bam, Bam conversation over. With her eyes averting my gaze the floor beneath her suddenly looked very exciting. I could see her willing them to hurry up and get a table for her and her daughter. I tried to continue but to no avail. No eye contact, no interest. So I had no time for her.

So my best friend and I stood there with Isabella, now also wishing they would hurry up. When we finally got seated I asked my friend if I was wrong. Should I have just smiled and made nice and said yes? No, certainly not. My friend agreed with me. If I had have just said yes she would have thought I was embarrassed about Isabella’s disability when she caught sight of me feeding her, carrying her to the toilet or holding her balloon she was given.  I shouldn’t have to hide Isabella’s disability to make people feel more comfortable. Throughout the meal I could see this lady looking at me. Watching me feeding Isabella, staring when she was shouting excitedly (something Isabella does frequently) watching the way Isabella is fascinated by her baby wipes. Did no-one ever tell her it’s rude to stare.

If you ask a complete stranger a question you can never predict the reply. I learnt this the hard way. Years ago when I was a Holiday Rep I asked one of the hotel receptionists when she was due. She told me about 20 years ago. Simply put, Awkward.com./Flooropenupandswallowme. Hence now I say nothing in case I make another massive oversight.

People being lost for words and becoming awkward isn’t always the case mind. Sometimes when people hear about her condition they ask questions and seem genuinely interested. If you have questions I will happily answer them; Will she ever walk? We don’t know. Will she ever talk? We don’t know, but we can hope and give her all the tools and support she needs to reach her potential – whatever that may be.

On the other hand I have met people who have surprised me by the obvious frank disbelief in their voice. Just last week when I told someone all of Isabella’s tests have back normal, it was followed up with a ‘Really?’ and a screwed up face full of disbelief. It seems to be hard for some people to understand that Isabella cannot be placed in a box with a label. That she has had several tests that have come back normal and that Doctors don’t know why she is the way she is. Doctors have actually referred to Isabella as a puzzle. They have called her unique. She is severely delayed and disabled. She is undiagnosed. Put simply she is a SWAN. Our beautiful SWAN.

I recently messaged some friends on Facebook that I don’t see often or in some cases not at all. I asked them for their support in spreading awareness for SWANS and gave them the link to this blog, if they had the time to read it. Several people messaged me back and were certainly not lost for words. They sent me wonderful messages, giving their support and asking me the ways in which they could help raise more awareness. Sadly there were some people who didn’t message me back, they said nothing. You see while the internet is great for sharing thoughts and ideas like here in a blog, it can also be bad, as the words are on-screen and without a voice things can be taken the wrong way. similarly the people who didn’t message me back could have had legitimate reasons or they didn’t know what to say and chose to say nothing at all, but no reply leaves me wondering why? Why didn’t they say anything?

I will happily talk to people all day long about Isabella (in-between groups, swimming, dog walks, home visits and hospital appointments! ) If you have questions I will happily answer them, although my answers might be vague and short, as we don’t have many answers ourselves. Without a diagnosis we don’t know what to expect or what the future holds, as we have nothing to compare it to. That doesn’t mean I won’t answer your questions. I would rather you asked why then say nothing at all and stare at us, pointing and talking with your friends.

So maybe this blog and the people who have read it and the people who follow it will gain some insight and understanding into what it is like having a child with an undiagnosed medical condition. What it is like to have a SWAN. They can then pass what they have learnt on to friends and family. Then maybe if we are really lucky the term SWAN in the future will become more widely known and understood and parents can simply say when asked, my child is SWAN….

Two steps forward..one step back..

Before 1970 there was barely any recognition of the rights of disabled people and more often than not they were institutionalised.  In 1970 the Chronically Sick and Disabled Persons Act was passed, whereby further provision had to be made with respect to the welfare of disabled people. Over the years more acts have been passed and more recently the Equality Act was passed in 2010, to protect disabled people and prevent disability discrimination. I feel fortunate that we are living in the present where such laws have been passed. Having said that even though these laws have been passed they are certainly not being fulfilled as they should be. I have mentioned in numerous posts about how we have to fight and battle to get what Isabella needs and we are not alone in this.

Provisions are made for disabled people and children and specialist equipment is available but the process of receiving provision or equipment is a lengthy and tiring one. Information is not readily available and the service we receive is generally poor.

On the advise of Isabella’s Physio I wrote an article expressing my view of the system from a Parent’s perspective see <life-on-the-other-side>. This has since been handed out to all the professionals that deal with Isabella and surprisingly was received very well. So much so that a TAC (Team Around the Child) meeting was called by Isabella’s Physio. This was something I had never heard of and had never been offered previously needless to say a date was set and information on the TAC was posted it to me.

On reading the literature that was sent to me it became apparent that the professionals had realised that they were not doing their jobs aswell as they could be, as a TAC meeting is where the professionals that work with your child and parents meet to look at ways in which the agencies can better support your child.

Isabella’s physio chaired the meeting as she is the CAF  co-ordinator. She opened the meeting by apologising that this hadn’t been done sooner, as she had the role of co-ordinator for sometime. This shocked me, as I had thought it was a new concept and that it was a coincidence that it had emerged around the time of my article being submitted. To be fair to her though she had printed a copy of my article off and highlighted the areas she thought were important and wanted me to expand on.

To begin with I felt slightly awkward with the situation, the fact I had four professionals (Speech and Language Therapist, occupational Therapist, Physio and Advisory Teacher )all staring at me waiting for me to begin. So I did. Using the print out I talked about the issues I felt needed addressing. I was tactful and didn’t point the finger directly at any professional, but I wasn’t going to waste this opportunity in making myself heard.

I started on the topic of equipment and stressed how the wait time for equipment is unacceptable. Isabella’s occupational Therapist acknowledged the wait was a long one but went onto explain the process. In short she explained that they start on the lowest level of equipment and if it is not suitable they then have to justify why they need to move up to the next level and so it goes until the suitable option is decided. She said on occasion her boss will look at the equipment she has decided on and if she feels it is not suitable she needs to explain the reasoning and justifications again to her boss in a meeting. All the while that these justifications are being made our children are waiting around for the equipment they so desperately need. It then isn’t as simple as going to the company direct for the equipment they have a specialist company they order from and this is where the wait can be extremely long. She then went onto to mention that the Wheelchair Service worked the same way. It shocked and frustrated me to think that once again it all came down to money, but then it did explain why initially at Isabella’s Wheelchair Assessment we were told to buy a regular buggy from the high street! See <So tell me what is it you do?>

I went on to talk about the lack of information that was available to me when Isabella first was diagnosed with probable Cerebral Palsy, such as suitable baby slings and specialist bike seats. They pointed out that equipment is always changing and there is always something new coming out and that they can’t keep up – yet they weren’t able to give me any advice at all.  I do think there is a huge gap in the market for equipment outside of the home, as well as inside and I certainly don’t think that the market is changing constantly that you cannot keep up. I suggested to them that it might be useful for them to keep a folder – ‘Resource Directory’, where they can add recommendations made by parents to pass onto other parents. For example we struggled when feeding Isabella, as she couldn’t sit unaided and regular high chairs couldn’t do the job. We found the Safety First Booster Seat and Rainforest High chair real lifesavers and still today make feeding Isabella a breeze. Having this information in the early days would have made life much easier.

As the meeting went on it became apparent that neither professional knew what the other did with respect to Isabella’s therapy, yet all of their input with Isabella overlaps in some way. I sat there listening to what they had to say, but was still in total disbelief that this hadn’t been done before. I bought this up as a topic of conversation and Isabella’s Physio said that she would now liaise with the other 3 on a regular basis and write a report that would be forwarded to Isabella’s pediatrician.

Since the meeting I have received Isabella’s HIEP (Home Individual Education Plan) from Isabella’s Advisory Teacher, that details all her targets set by all the professionals she sees. As a bonus tucked inside the envelope I also received a link to a website that carries out searches for special products and trials new items for parents. So may be, just may be I am being listened to? But then I received an e-mail from Isabella’s Physio to say that I won’t be receiving the paper work detailing the notes of the meeting since she had no time to do it! Why doesn’t that surprise me?

I think that the system has a long way to go and currently for every two steps taken forward the system is always taking one step back…here’s hoping that one day the system and the professionals within it will get it right first time….

The White Rabbit…

Being a Carer is a Full Time job, only longer hours, fewer holidays and much less pay. Not that any carer does it for the money, they do it because they care. As a parent who is a Carer for my daughter Isabella it wasn’t role I chose, but it is a role I wouldn’t change, but it obviously goes without saying that if I could choose for Isabella to be without her disabilities I would.

When I say the job is Full – Time, it is 24/7 around the clock. Now any parent would argue that it is the same for them, I wouldn’t argue it isn’t. A child like Isabella who is unable to do anything for herself needs constant care and attention like a baby does. Now a baby without developmental delay will develop and make the transition to a toddler where they begin to do things for themselves. A toddler can hold his sippy cup and take a drink when he wants, a toddler can say he is hungry and be given a snack and feed himself (obviously under supervision I am not advocating that toddlers be left to their own devices) but they are able to take ownership of what they are doing.

Isabella on the other hand needs to be given a drink as she cannot hold a cup, she needs to be fed a snack, as she cannot hold objects let alone put them in her mouth and this is where the role of  Carer comes into play as Isabella needs help doing the things that Toddlers can do on their own.

Like any Mum will know there are never enough hours in the day and we are always getting ready to go somewhere – the park, swimming, Music Classes, taking the dog for a walk, shopping (not a favourite of Isabella’s and hospital appointments. Now the timing of going places has to be based around Isabella’s snack and meal times. We need to ensure that we either have a snack/meal  before we go or that we arrive at our destination in time for her snack/meal. The reason is if we are travelling by car I am obviously driving and unable to feed Isabella and she can get quite grumpy when she is hungry (as I can I!)

When it comes to entertaining Isabella she needs help with this too, as she cannot sit unaided or hold any toys. Now the toddler I mentioned before can happily play with his toys ( in a safe area) while his Mum hangs out the washing or prepares lunch. For me to do any quick odd jobs means leaving Isabella in her cot or in her chair. I can leave her in her chair with toys on her tray but they usually end up on the floor very quickly. She has mobiles and activities in her cot to amuse her, but they only amuse her for a short length of time. So what every I am doing needs to be done quickly or not at all and saved for later.

So time is of the essence and where possible I will do things or not do things as the case may be to save time. This got me to thinking of the White Rabbit in Alice in Wonderland, running around with his big pocket watch singing;

I’m late, I’m late for A very important date.

No time to say hello, good-bye, I’m late, I’m late, I’m late I’m late

 and when I wave, I lose the time I save,

my fuzzy ears and whiskers ,

took me too much time to shave

I run and then I hop, hop, hop, I

 wish that I could fly.

There’s danger if I dare to Stop and here’s a reason why:

 I’m over-due, I’m in a rabbit stew.

Can’t even say good-bye, hello, I’m late, I’m late, I’m late.

Like the white rabbit said shaving takes too much time (not that I have whiskers to shave – not yet anyway!) but all I will say is that trousers for women were a marvellous invention! As Isabella likes to pull my hair (she doesn’t mean to) I will just shove it in a pony tail and as for Make – Up I rarely bother! But then these are not bad things, as I really enjoy when I do get the chance to get dolled up and pamper myself for a night out.

Now I am not saying we are always late by any means, but there are times when it feels like just stopping and having a conversation however brief will make us late! I very often want to stop and talk and I am usually very mindful of the time, thinking of where I need to be next and what I need to do. Then if I have managed to avoid getting into a long conversation (it’s me I don’t know when to stop, just ask my husband!) I then make the faux pas of ‘popping’ into Tesco and end up in the slowest queue in the world, with the cashier who looks like it’s his first day, or I try to manoeuvre the buggy around a crowded street full of ‘bimblers’ (seriously how do people like that get anything done!) and then once in the car you can bet your bottom dollar I get stuck behind a granny who doesn’t know how to get out of first gear!

Like White Rabbit I too wish we could fly sometimes and by-pass all the traffic we seem to get stuck in when go to our hospital appointments in Oxford. Then the traffic jams throw out all our timings and in some cases we are then late! Even if we have allowed time for traffic!

But late or not we get to where we need to be and continue with our busy day. I think in the future I may just invest in a big pocket watch and stick on a pair of bunny ears and start singing ‘I’m Late’..

Daddy, Daddy Cool…

Since it’s Father’s Day and Isabella’s Daddy is away, I thought it would be nice to dedicate this post to him. This is my way of saying on behalf of Isabella what a wonderful Daddy she has and how much he is loved by the two of us.

From the minute we found out I was pregnant, Paul was the happiest man in the world. For the whole nine months he looked after ‘Peanut’ and I and still does today.

He clearly couldn’t wait to become a Daddy and I loved listening to him tell me about all the things that he would do with ‘Peanut.’ The list included taking Peanut to Football matches (both England and Liverpool) playing Football with Peanut, watching football on the TV with Peanut, you can see the general theme here! But seriously he was unbelievably excited (as was I ) and Peanut couldn’t arrive quick enough.

He would talk my tummy and once Peanut had got the hang of kicking, Peanut would kick when Daddy’s voice was heard.  Paul would always say ‘Peanut it’s Daddy’ and Peanut would kick excitedly. Daddy would then talk to Peanut about all the exciting things to come in the future. Every night before we went to sleep he would kiss my tummy and say ‘Good Night Peanut’. In fact it became such a habit that the first night we had Isabella at home, Paul still wanted to kiss my tummy, but then realised he had the most perfect little girl in our room sleeping soundly in her moses basket.

Paul was so concerned about the safety of Peanut and I that during the heavy snow in December (I was 5 months pregnant) I was under strict instructions not to leave the house in case I slipped and fell. I didn’t argue – I stuck the heating on and snuggled up on the sofa watching movies (as everyone had told me to make the most of the time before Peanut arrives)

In the February we set up the nursery. It was clear that Paul couldn’t believe that he would be a Daddy in a matter of weeks. He just kept looking around the room and imagining Peanut in the big cot. I remember him sitting in the nursing chair cuddling Peanut’s first teddy and smiling from ear to ear.

In the March we went on a special weekend away, as we knew it would be a while before we would be doing that again. It was a wonderful weekend filled with walks on the beach, romantic meals, cuddles (although they were getting a tad difficult with my now 1 metre waist!) and lots of talks about the future.

On the 19th April when my waters broke Daddy kept his cool and got us to the hospital and in typical Paul style got bored when it didn’t go as quick as he had hoped! The boredom soon passed when the contractions started. Paul found it hard seeing me in pain and tried to stay strong and coped better when I finally got my pain relief. He stuck by my side, holding my hand and kept telling me that very soon we would be meeting Peanut and finding out if she was a boy or a girl.

When Peanut finally made her apperance, after keeping us waiting an extra long ten days the best feeling other than meeting her myself was Paul telling me that Isabella looked straight up at him when he said the infamous phrase, ‘Peanut it’s Daddy.’ He welled up and looked like he was the happiest Daddy in the world.

That hasn’t changed today. Over the last two years our little girl AKA Monkey, Baby G, Izzy Rascal, Baby Girl has been the apple of her Daddy’s eye. His face lights up when he gets in from work and sees her and she smiles happily right back at him. On a Saturday morning they are thick as thieves when I get my much welcomed lie -in! They have breakfast together, watch the Grand Prix (Isabella’s choice apparently) and take Daisy for a lovely walk around the lake.

Since Daddy has been away Isabella has missed him greatly. The mere mention of the word ‘Daddy’, she laughs and her big blue ‘Daddy’ eyes open widely and she looks around for him. Luckily we are fortunate to be able to speak to Daddy every night on Skype. Isabella gets excited when she hears the ringing tone and her little eyes light up when she sees and hears her Daddy.

I tell her that Daddy has gone to work on a plane and that he will be back soon. I tell her about all the things that we will do together as a family once Daddy is home. It’s only 41 sleeps now and we are filling our days keeping ourselves busy until that time.

Happy Father’s Day Daddy – We love and miss you very much and think you are the best Daddy in the world xx

What doesn’t kill you makes you stronger..

As I have mentioned in previous posts music plays a massive part in both mine and Isabella’s lives. I have always listened to song lyrics in the past and thought that song could be about me or my husband and I. It’s probably a girl thing, as my husband Paul can be singing along to a song and know all of the words and I say something like, ‘Ah that song could be about us!’ He will just stare at me blankly and say ‘ Really? I Don’t know what it is about!’ I don’t understand how that is possible when he sings all the words!

That however is the thing with music, some people just get pleasure from listening to it, others like myself get pleasure form listening, but are also moved by the power of the words and can really relate to them and sometimes find comfort in them. Music is like therapy for me, just like when I write my blogs. I feel good letting it all out. The words tumbling out of my head and onto paper (so to speak) help me organise my thoughts and feelings and make room inside my head for more.

The same can be said when I sing. I let it all out and put all my feelings into my singing, I am no Beyoncé believe me! If I have had a crappy phone call, an obvious stare, a typical maxim or just one of those days where nothing is going right I channel all my energies into singing. Now don’t get me wrong I don’t just start impromptu singing, I just sing extra loud when music is playing; this usually happens when we are in the car. Like I mentioned in the post >ive-got-the-music-in-me<  Isabella listens to wide variety of music. So in the car we chop and change between Isabella’s music and regular chart music.

At the moment we are listening to Kelly Clarkson’s new album. This has some extremely powerful and appropriate songs on it. My favourite has to be ‘What doesn’t kill you makes you stronger.’ Isabella and I love the intro. It has lots of loud guitar strumming, which gets us both excited and both our bodies moving; My head nodding to the beat and Isabella’s arms and legs outstretched and bouncing excitedly. When the powerful lyrics kick in both Isabella and I get going vocally. Isabella screaming happily and me giving the song my all. The ‘all’ being the crappy phone call, the obvious stare or the typical maxim.

Singing the main chorus of this particular song out loud makes me feel better and the words are certainly fitting;

What doesn’t kill you makes you stronger,

 Stand a little taller

Doesn’t mean I’m lonely when I’m alone

What doesn’t kill you makes a fighter

 Footsteps even lighter

I really do find comfort in the lyrics. I do believe that given everything that we have had to deal with up to now, I am most certainly stronger and most definately a fighter…