Time moves slowly, but passes quickly…

We are always wondering where has the time gone, we say it flies by. We talk about there not being enough hours in the day and that time is precious and we should treasure it. As an adult I feel time seems to pass much quicker; days rolling into weeks, and the weeks into months. I thought it had been 4 years since I had written on here last. Turns out it has been almost 6 years to the day! Never has the phrase ” where has the time gone? ” been more apt.

I have had friends and family saying several times over the years that I should write again. I have wanted to, even sparked some ideas, but somehow never got around to it. I am only here by accident.

In the midst of the lockdown that we all find ourselves in I have spoken to my neighbours more than ever before, (from over the fence) I think it’s due to the fact our lives have slowed down, we are no longer in a rush to get anywhere and we are all missing social interaction with family and friends. We got talking about Isabella, who by the way now is ten can you believe it? I sent my neighbour the link to this blog and found myself reading the first entry when Isabella was a mere two years old and the whole having a disabled daughter was very new. This was a time when her being disabled wasn’t obvious. When people wouldn’t know that she was disabled and when they were told they would sometimes shift about uncomfortably not knowing what to say.

Nowadays we don’t have to say anything, the fact our beautiful, tall, 10 year old is being pushed around in her large wheelchair wearing a dribble bib is obvious enough. There is no longer the need for the sign on her wheelchair buggy that read ” please treat as wheelchair” There are no more funny looks as I pull into disabled parking spots. Some things have changed with time.

It’s made me realise that now I don’t have to explain to people that Isabella is disabled, the conversations surrounding her disability are a lot fewer. Don’t get me wrong some people still ask questions, but if they don’t ask I don’t openly start chatting about it.

It’s got me thinking about my neighbours and reflecting on conversations I’ve had with them. I remember asking them what the Blackpool Illuminations were like, as Isabella loves lights. I remember asking how busy it was and if it was easy to get around, as we have the wheelchair. Yet in all this time I haven’t ever said what Isabella’s condition is or spoken at great length about her. Where previously it was the natural flow of conversation from having to point out Isabella was disabled, to it leading to further questions about her condition and what was wrong with her.

So this evening I have sat here and chatted over text about Isabella with my lovely neighbour who now knows more about Isabella and her condition. We are both looking forward to a play date with her and her two boys once the lockdown is over and it’s safe for Isabella to have people over.

Today has reminded me that when people meet Isabella they may want to ask questions, but are not sure how or if it’s okay to ask. I love people asking about Isabella and explaining about her condition and disability. The more that people understand and learn about disability will help society to be informed and encourage changes to be made.

When we meet new people I need to remember to say, as you can see Isabella is disabled, but very happy, if you have any questions about her, her condition or disability you can ask us…

I want to ride my bicycle…

Isabella has never had an interest in toys really. She went through a phase for a few months of being totally and utterly obsessed with wet wipes. She was fascinated with them. She would sit there for unusually long periods of time for her, fixated with them. Using both hands, (a feat in itself )to turn them over. Her face smiling, as the packet would make a great crinkly noise with each turn. You could see her sheer determination and satisfaction in successfully pulling them out one by one. It was such a joy to see her taking a real interest with something and really trying hard to use both of her hands.

When it comes to toys Isabella has an abundance of them. Light up, textured, musical, all kinds of different toys to help stimulate her and gain her interest and focus. She will play for some time with each, but it has to be with our hands over hers, as she cannot hold anything for longer than a few seconds. Her hands after a while slip out from underneath ours and her interest wains and she looks around the room for something else. We can only imagine it’s due to frustration, as she isn’t able to play independently.

One day whilst unpacking the swim bag, I took out the swim woggle. Her eyes lit up and she reached for it. She loves the woggle whilst in the pool and it had never occurred to me to use it out of the water. Seeing her reach for it, I moved it ever so slightly further out of her reach and her determination in her face was clear, she was after the woggle. That was it, another object that would become a favourite. She would commando shuffle to it and once in her grasp would pull it and flip it over. Like the wipes, the woggle would hold her keen interest for long periods of time.

Isabella loves music and dancing around whilst being held in our arms. She loves to be thrown about and up and down and swung around in various directions. We always know when Isabella is having fun, as she has a terrific infectious giggle. For a child that is non mobile she is constantly moving her arms and legs and desperate to have the freedom to move independently.

We had seen some of her friends who had specialist trikes. Isabella was meant to have an assessment before Christmas, but we had to cancel as she was poorly. I remember being out in town on Boxing Day and seeing a local girl Sophia riding her trike that she had got for Christmas. Sophia couldn’t stop smiling and looked so happy. I remember thinking the assessment which had been pushed on to the new year, couldn’t come soon enough. I couldn’t wait to see Isabella sitting smiling proud and happy like Sophia.

The day of the assessment soon came round and Isabella was in great form. She was crying whilst she was being strapped in, but the minute the trike and her legs started moving she broke into the worlds biggest smile and I burst into tears. Watching my baby girl sitting and moving independently was truly a moment I will never forget. She laughed and smiled, as she was pushed up and down our street.

She kept looking down at her legs and looking at the world around her. I didn’t want to take her out or for the trike to be taken away. I kept playing the video I took over and over. Isabella’s Daddy wasn’t there for the assessment, and like me was blown away when he watched the video.

There was no question in our minds, we would get Isabella her own trike. We contacted Tom Cat trikes and they said there was a 9 week wait, as the bikes were hand made from a small workshop and they had a lot of orders to be completed. We asked for it to be completed by her 4th birthday. There was nothing else we could do but to wait and hope the weather would be nice for when it arrived.

The day finally came when we got the call to say the trike was ready to be picked up. It was 5 days before her birthday. We set off in the car on a sunny day, feeling so excited. Paul was incredibly excited as it was going to be the first time that he would had seen her in person on the trike. John from Tom Cat trikes pushed out Isabella’s brand new shiny purple bike, my heart was almost thumping out of my chest. I couldn’t wait to see her on the trike again and see her Daddy’s reaction.

I watched Paul’s reaction, as he experienced for the first time what I had all those months ago, our little girl riding a bike. Smiling, laughing and sitting there proudly. Sitting independently looking at the world from another perspective, watching her legs go round and best of all looking at Mummy and Daddy with a real sense of achievement and pride.

Rather than wait for her birthday we got her out on it every day, we gently eased her into it, only allow legs to be pedalling for 15 minutes to begun with. I choked up every time I saw her in it. For the first few days she would cry every time we put her in it, only stopping once the bike started moving. On her birthday something clicked and she understood that she had to go through a bit of fiddling and fastening with her arms and legs before she could get to the good part, moving and pedalling and feeling the wind in her hair. We both loved watching her reaction of feeling free. Her 4th Birthday fell on Easter Saturday, so we took her on an Easter Egg hunt trail on her trike, she sat on her bike proudly as other children and adults commented on how cool her bike looked.

As well as being able to push Isabella in the trike we also bought the bike trailer which meant we could finally go out on those family bike rides, we had talked about when she was a baby. It had always been previously dismissed due to not having suitable supportive bike seats on the market. Now with bike trailer, we could finally ride together. Isabella on her first go was attached to the back of her Daddy’s bike and she laughed hysterically as she flew over speed bumps with her pig tails flapping in the breeze. When Daddy stopped she screamed and laughed for more. It was clear to see how much joy the trike gives her.

Friends and family members who got to see her ride, were equally stunned. We have truly found something she can get real pleasure out of and that she can feel independent in. Without realising it she is also having a physiotherapy session, building her core strength and her leg muscles, as well has getting the feed back from her hands of the sensation of holding on.

We have had the trike 6 weeks now and the excitement we get from seeing her on the trike is just as strong. Isabella still loves the trike in fact on days where she is unable to go on it due to the wet British weather are sad days for us all. We pop to the shops on the trike, to the park and walk the dog with Isabella on her trike. In fact we take any opportunity we can for her to ride on it. She is now up to 35 minutes of her feet pedalling and has even managed a few rotations on her own. There is definite improvement in her core strength and leg muscles and her holding on to objects and bars has improved significantly.

I cannot emphasise enough how amazing this piece of equipment is and how much it has changed Isabella’s life. Thank you Bob Griffin of Tom Cat Trikes for your amazing invention, that has quite simply changed the way in which Isabella can see and explore the world around her.

If you would like to learn more about Tom Cat Trikes and their amazing range of trikes please follow this link

http://tomcatspecialneeds.co.uk/about/

Finally we also would like to thank all our friends and family members who contributed to buying Isabella’s amazing birthday present.

I would like to say a big thank you,
For your contribution to my trike,
It’s by far my best present ever,
And most definitely a strike,

I love to watch my legs go round
And on it I feel so free,
I never stop smiling and laughing,
As you all will see,

I have cycled to the shops,
And cycled to the park,
And given half a chance,
I would cycle in the dark!

Little things mean a lot…..

Society, and the way some people with their attitudes and ignorance behave no longer surprises me. Sometimes however, I find I can be surprised, but in a good way. These good surprises somewhat make up for he times when the ‘Blue Badge Police’, stare so hard that they bore holes in my back. They make up for the time the nosey lady (a member of Blue badge Police) sat in her car, watched me park up, watched me unload Isabella’s 22kg Special Needs buggy and then watched me place Isabella’s Blue Badge on the dashboard, she then got out of her car and had the audacity to ask me if I realised I was parked in a disabled bay. They make up for the times when customers in restaurants, stare opened mouthed, forks hovering below their lips, as we unfold and assemble Isabella’s booster seat, place her in it, pop on her bib and begin spoon feeding her. It makes up for the lady in Boots, who with her haughty disdain stared at Isabella in her sling and asked if she didn’t ‘like’ walking.

I have and will always maintain if you have a question then you should ask. Asking is much better than staring. Staring is rude and makes us feel uncomfortable. By asking me you will learn and hopefully share what you have learned with others. Not everything is as it seems, not all disabilities are visible. If you ask you will understand that my daughter is not lazy, she is unable to walk. You will understand that Blue Badges are issued to ‘everyone’ young or old with a disability, not just to people who are over 65 and have a disability. You will understand that we bring our own booster seat to restaurants, as Isabella is unable to sit unaided and regular restaurant high chairs don’t offer enough support for her. You will understand that Isabella doesn’t have use of her hands and is unable to feed herself.

When people to do take the time to ask, listen and understand, it is a relief. This trip to Bahrain has been full of nice surprises; people listening, understanding and trying to help.

When we met Isabella’s riding instructor Karan he put us completely at ease. I explained about Isabella’s condition and how it affected her and he not only listened, but he remembered. I explained that Isabella is not good in natural sunlight, it doesn’t even have to be bright, but it can make her squint. With that in mind he ensured he walked the horse around the arena avoiding any sunny areas. I told him that Isabella, like all children can have good days and bad and she may not may the last half hour (We pre booked 12 half hour slots). He told us not to worry and that she wouldn’t miss out on any of her time. In fact he said that even if she does ride for her full half hour, it would only be marked down as 15 minutes. He explained that he wasn’t doing anything difficult, it wasn’t like a regular half hour lesson, where he was teaching, he was merely walking the horse around the arena. He understood how important it is for Isabella and the fact that riding this frequently is not available to us currently in the UK. He wanted to help, and said it was the least he could do. He told us that he actually wanted to give Isabella the sessions for free, but sadly wasn’t able to. His kindness and thoughtfulness has touched both myself and my Mum.

Isabella giving Karan a ‘High Five!’

His kindness didn’t stop there. After my first session of riding with Isabella, he commented that I was a natural and it was in the blood. Then after my second session he asked me if I wanted to have a go at trotting! He told me that he wanted to give me more experience riding so I would feel even more confident holding Isabella, as I would feel more confident on the horse. I said yes immediately and didn’t have the time to get nervous. I surprised myself when I actually did okay. I am not going to the Olympics any time soon, but it is the first time a sporting activity has come fairly natural to me, as anyone who knows me, knows I cannot throw, bat or catch for toffee!

Sometimes accessing or finding things to do with a special needs child can be tricky. Often at theme parks for rides Isabella has to be able to sit unaided and usually I cannot sit with her, as most rides have a maximum height restriction. Here in Bahrain we are extremely lucky, as not only as I am able to ride with Isabella, they allow us both to ride for free. Soft play is great fun, but it has to be quiet or else Isabella can get trampled on, as children understandably get excited playing and don’t realise or understand that Isabella cannot move out of their way. A lovely new soft play centre opened in one of the new malls here in Bahrain. We went to check it out to see if it was suitable, as I have to go inside to help Isabella move around and play. The ladies at the reception were very helpful and understanding about Isabella’s condition. Without asking they told us that mornings were the best time to come, as there is virtually no one else around. When we asked how much it would cost they said it would be free for the both of us. Again I was pleasantly surprised. I enjoyed the soft play area, as much as Isabella. We both had a fantastic time. It gives me such a warm, fuzzy feeling, when I see Isabella enjoying the same things that other children do.

The good surprises just keep on coming. On our last visit in October we swam upstairs on the roof top pool, but since it is only spring here in Bahrain the water is quite cold and not really suitable for Isabella. So we did some investigating and found that the beautiful 5 star hotel 5 minutes walk from the apartment has an indoor pool. We spoke with the manager and explained that I was here on holiday for some respite with Isabella. He listened patiently, while we explained about Isabella’s condition and that she loves the water and how our pool is now too cold. He said that he would love to help and that we were more than welcome to use the facilities here at the hotel and that we wouldn’t have to pay for Isabella. The pool was wonderfully warm and relaxing, Isabella and I loved it.

Over the last few weeks, I truly have been touched by people’s kindness, respect and thoughtfulness. Little things really do mean a lot.

The fear deep within…

You never truly understand a situation until you find yourself in that very situation. You can try your best to empathise and be understanding, but you will never be able to ‘completely’ understand. It is for this reason that support groups are vital to anyone in a particular situation. Being surrounded by people that do ‘completely’ understand can you help you through the good and the bad times.

Having that someone to talk to, to either rant or rave is extremely important. Knowing that you are not alone is vital part of the process or journey that you find yourself on.

In the case of having a child with special needs, support groups can become a second home, a second family. Being surrounded (virtually or otherwise) by families in the same boat can help you to feel less isolated. You become part of a majority, whereas in everyday life and everyday situations you are more likely to be part of a minority. You find yourself in unfamiliar situations where you are not always understood and it can be lonely place. Yet with the help of technology you find yourself in an instant in a safe place. A place where you can laugh or cry openly. You can share achievements that are enormous, but to the outside world seem minuscule.

If your child is undiagnosed or without a prognosis support groups can give you real sense of hope and inspiration. Just hearing about the wonderful achievements that other children have made can fill you with optimism. Seeing videos and pictures of children that have taken their first steps or spoken their first words are simply magical. You find yourself sharing that special moment with their parents and feel immensely proud. You then imagine what that long awaited moment would feel like. It leaves you feeling warm and fuzzy.

Sometimes though the openness of what people share can awaken your fear within. Life without a diagnosis or prognosis is a scary place. You take each day as it comes and have no idea what is around the corner. You live in fear. For the most part however, you put that fear to one side, but it nags at you from time to time. It catches you unawares and you find your fear can creep up on you out of nowhere, when you least expect it maybe whilst you are running everyday errands or at night when you are trying to sleep. Sometimes it is when another family goes through what you fear most. You really feel for them and are sometimes lost for words. You want to scream at the top of your lungs at how unfair life is. The situation makes your fear more real. It gives your fear a face. Your fear can suffocate you and sometimes it takes ultimate strength to push it back inside. You cannot let the fear consume you and eat you up, but on occasion it does. You feel guilty for feeling this way, maybe even selfish, as it’s not happening to you, but the fear that it can happen is all too much. So you may take a step back, allow yourself to breath, allow yourself to cry, and find your strength again.

Your fear is pushed within once more and you go about your business until the next time. You know there will be a next time, you just don’t know when. You know however that you are not alone in feeling this way and that there is wealth of support to help you fight that fear when ever it raises it’s ugly head again….

Horsey, Horsey don’t you stop…

I have so much that I want to blog about, but at the moment only major events are spurring me on to actually put my words to print. My last post, as you know was motivated by need to express my sadness for the passing of beautiful Lyla. This post is a happy one..

Let’s talk about Hippotherapy. Nope it is nothing to do with hippos, that was my first thought too. Hippotherapy is form of physiotherapy on a horse.

“Hippotherapy is a form of physiotherapy using the movement of a horse to replicate the sensory and motor output of the human pelvis in walking. It is delivered by a qualified physiotherapist who has undergone additional qualifications and is fully insured to teach this therapy. The therapist will usually work one-to-one with the disabled person or child, using the horse to help them learn to co-ordinate and control their responses. The therapist will also place the disabled person in different positions on the horse to help develop balance and posture. Hippotherapy is different from therapeutic riding. Therapeutic riding is normally run by stables associated with the Riding for the Disabled Association. Conducted in small groups with a riding instructor and physiotherapist, the lesson will again use the horse’s natural movements to stimulate desired responses in the rider’s muscles and posture.”

Back in the Spring of 2012 Isabella’s Physiotherapist asked if we would be interested in Isabella taking part in a four week summer programme, with one riding session per week. We jumped at the chance, as we were and still are keen to try anything that will benefit Isabella and help her reach her potential. I was anxious about it though, as at that point Isabella was very nervous around strangers and easily startled in new and unfamiliar situations. We got to the stable very early and were able to watch two children ride before Isabella. A little girl, not much older than Isabella cried the whole time and was eventually taken off the horse. A little boy followed and smiled the whole time. I had a sneaky suspicion on how Isabella would react.

She was upset from the minute I handed her over to the physio and was very sad the whole way round. Every time she passed me she would look at me with her watery big blue eyes pleading for me to take her off. The physio assured me, although she was unhappy she was sitting very well and gaining a lot from the ride. The more she went round and the more the physio sang to cheer her up, the more Isabella cried. Very soon Isabella was bordering on inconsolable so we made the decision to take her off. She had managed 5 minutes of her half hour session, I hoped she would be better on the following weeks. She was slightly better on the sessions that followed, but still only managed 10 minutes each time before she became very distressed. She showed little enjoyment and seemed as though she had little interest in horses or the riding.

Then last year we were offered another block of 4 riding sessions. We accepted them as, I hoped Isabella would enjoy it more this time. In the last year she had got a lot better with strangers and unfamiliar situations. Her first session went fantastically well, she smiled happily as I handed her to the physio and smiled the whole time she was on the horse. Each time she passed me by she beamed with pride. She did much better and lasted an amazing 20 minutes, before she let us know she wanted to come off.

It was lovely to see how taken she was with the horses and the riding. She sat beautifully on the horse and both Paul and I felt that the sessions had a positive impact on her sitting and posture. I asked the physio if there were more sessions that we could attend. Sadly due to funding and a lack of staff they were only able to offer us sessions in the summer. We left the stables happy, but disheartened that we would have to wait another year to see Isabella ride.

My Mum has ridden horses since she was little and before moving out to Bahrain she owned a horse of her own. I asked her if she could ask around the local stables in Bahrain if they would be happy to have her as a experienced rider, sit on the horse with Isabella, amazingly they said yes. We always look forward to our visits to Bahrain, but now I was extra excited, as Isabella would be able to enjoy something fun and that would be of great benefit to her.

Last Wednesday, after having a couple of days to settle in we went for Isabella’s first riding session. Both my Mum and I were very excited, I certainly couldn’t wait to see Izzy on the horse with my Mum. We showed Isabella the horses, while her own horse, Princess, that she would be riding was being prepared. Isabella even got to wear a hat, it was the smallest size available, it fit her and she even tolerated wearing it.

She happily got on the horse with my Mum and enjoyed every minute of it. I was choked with pride. It was so lovely to see Isabella not only enjoying riding, but enjoying it with my Mum. I know my Mum felt proud and very special, as Isabella can wriggle and can be very unpredictable and I certainly wouldn’t trust her with anyone that I or Isabella didn’t feel confident with.

The riding instructor Karun is lovely. He really made us all feel very special. He didn’t rush the session and went well over the allotted half hour we had paid for. He listened when we told him that Isabella wasn’t good with natural sunlight and made sure he avoided it when he was walking around the arena. He brought Princess to a halt when he could see that Isabella wanted to give her a cuddle and lie on her.

After two sessions of Isabella riding with my Mum, Karun asked if I had an interest in riding. I told him that I had tried it previously and hadn’t really enjoyed it, but seeing how much Isabella enjoyed it and gained from it I would look into taking lessons in the future. I told him that I would love to sit with Isabella and be a part of her riding. He suggested that on our next session, I have a go on sitting on the horse to see if I would be confident enough to ride with Isabella. My stomach churned with excitement and nerves.

So today for the second time in my life I sat on a horse, only this time I actually genuinely enjoyed it. Using the box I climbed on wearing my Mum’s hat and feeling excited and nervous at the same time. As I sat on the horse, I must have shown my nerves, as he told me to relax and we set off towards the arena. We walked around the arena twice, with my hands on my thighs I took a deep breath and relaxed. I felt okay and held my balance. I felt ready to see if Isabella could sit with me. She was passed up to me and was beaming away. She sat beautifully and didn’t once arch her back or wriggle, so we set off walking. I felt confident and proud. I was sitting on a horse with my daughter. I couldn’t believe how well she was sitting. She kept craning her head to look at me, but struggled to with the peak of her hat blocking her view. Finally she managed to look at me and gave me the proudest smile she could muster. I was choked, I looked down at my Mum who was giddy with emotion and pride.

As we sat on the horse we sang songs and Isabella laughed and smiled. Both my Mum and Karun paid me compliments telling me that a non rider holding a child like Isabella was extremely difficult and I was doing very well. The time flew by and before we knew it Isabella had been riding for a full half an hour! Even as she was passed back down to my Mum she was still beaming away happily. Getting on the horse with the box was relatively easy, getting off however was a feat in itself. I slid very unlady like down the horse and landed like a sack of spuds! Well you can’t have everything eh?

As I look back on it now, I still cannot believe I did it and I am really looking forward to Isabella’s next session…

In memory of Lyla…

I haven’t posted since November. Today I wanted to, no needed to post. Over the last few days I have being devastated by the passing of a beautiful SWAN, who I never met. I never knew her personally.

The previous paragraph was written a week ago. I had to stop, as I was lost for words and couldn’t see through my tears. I foolishly went on YouTube to listen to a song by Celine Dion and had to put the lap top away. I will post the link to her video at the end of this post.

I didn’t know what to write last week, I actually still don’t. So excuse me, while you join me on my ramblings, sorting out my thoughts, as I always do, with my personal therapist – my blog. Lots of my friends have blogged about little Lyla already and I haven’t found the courage to read them yet.

http://gingerbreadandsunshine.blogspot.co.uk/2014/02/the-words-of-others.html

It’s very strange this emotion you have for someone, a family you never knew or met personally. It happens all the time when I watch a film or a programme on TV, if anything sad happens I cry. If anything happens to a child I ball my eyes out, as I am sure most parents do. The passing of another SWAN has hit me hard.  It has hit the SWAN community hard. Another beautiful SWAN, who will join the gorgeous Harry and Beatrice, who went before her.

Anyone who says the internet is full of rubbish, in part is right, some of it is a real waste of cyber space. I know people who detest Facebook and again I can understand their reasoning, when some people use it to bully, manipulate, boast or simply air their dirty washing.  However for me and thousands of other people the internet and Face Book has been a life saver. I have been on Facebook for six years now, but it is only the last two and half years that have been of any real importance. 2 years and 10 months ago to be exact I found SWAN. I know I have harped on about it before, but it was a huge turning point on our journey. We had found a community that understood us and that welcomed us with open arms. At this time the community was very small, with less than 100 members. We shared our experiences, fears, tears and sadness. We hugged and celebrated virtually. We shared our deepest fears and our embarrassing moments. You see although it was our children that brought us together, we also found we had other things in common and weren’t only just parents of a disabled child.  It was so nice to have safe haven, where you could run to when the outside world had been mean or harsh. SWAN became and remains to this day, my family. It is because of SWAN and the values they uphold that I have a second virtual family, my PMG Family, who now too are a huge part of my life.

Over the years the SWAN group has grown massively, as I type we are two way from reaching 900 which is epic.  It has been harder to keep up with all that goes on, as there is so much going on, with so many members, but no one is ever forgotten and when something huge happens, everyone rallies around to offer support.  Lyla being taken to hospital was a huge example of how support can be given virtually. Not an hour passed by where someone wasn’t checking in for updates on her, it was all anyone could think of. Candles were lit, profile pictures changed and prayers were said. Then came the news we didn’t want to hear and that no parent should ever have to face. Lyla was being transferred to a hospice, where she could spend the rest of her few final days with her family. I remember playing with Isabella that same evening and her giggle making me cry, as I imagined no longer being able to hear that giggle or see that gorgeous face. My heart was aching for Lyla and her family.

For me personally the news of her passing caught me unawares. Although I had been thinking of Lyla and her family, I was at my brother’s house celebrating my niece’s 5th birthday. It was an emotional day anyway, as it was the first disco party Isabella had ever been to. We had an amazing time and Isabella enjoyed the lights, dry ice and loud music. We danced the whole time and only had a break when it was time to eat. Isabella loved every second of it and that gave me such a warm fuzzy feeling. She didn’t stop smiling the whole time. She was mesmerised and occasionally taken aback by the other children. Her enjoyment made my heart happy and replaced the few heavy moments when I looked longingly at the other children running around.

When I heard about Lyla, I took myself away to gather and compose myself. I thought about Lyla and her family and couldn’t even begin to imagine what they were going through. No one should ever have to say goodbye to their child. Not ever. My finger hovered over the tributes that had been left for Lyla, I could only manage kisses. I didn’t know what to say. What do you say to a Mother and Father who have had to say a final goodbye to their one year old daughter. There are no words.

Lyla passed away peacefully in her parents arms. That night after Isabella had fallen asleep in my arms. I cried, as I cuddled Isabella and held her soft face close to mine, her cheek was wet from my tears. I didn’t want to put her down just yet, so I sat there for a while in the dark just thinking about Lyla and her family. Selfishly I also thought about what would happen if I lost Isabella and the thought was unbearable. I thought back to the party and Isabella’s smile and it reminded me that we were very lucky. Okay so she hadn’t been running around like the other boys and girls, but she was happy and with me. Yet at the same time a family was grieving the loss of their daughter. Something no parent should ever have to do.

During this unthinkably sad time, her family have decided instead of flowers they would like donations made to the Forget Me Not Children’s Hospice, where Lyla spent her last few days with her family.  http://www.justgiving.com/Lyla-Pearson Given the pain they are going through, they are thinking of other families and their children, which is truly remarkable and amazing.  Please visit the memorial page and read her beautiful tribute. Please donate if you can.

There is a saying that life is precious and it most certainly is. Hold your loved ones close and cherish every minute you have with your children.

Lyla will be laid to rest tomorrow at 10:30 am, please spare a thought or prayer at this time, as her family say their final goodbye.

Tomorrow Lyla,

We say a final goodbye,

You have grown your wings,

and sadly must fly,

When we look at the night sky

we will think of you

as Lyla translated

is ‘Night’ in Hebrew,

Sleep tight Little Lyla,

you we will miss,

as we look to the sky,

and blow you  a kiss.

By Tracey Gardiner

For you Lyla – Fly – By Celine Dion.

http://www.youtube.com/watch?v=U5W4RjTW3zQ

The Price isn’t right

I have been intending to blog for days now, figuring I would use my time in sick quarters wisely. Instead I spent my time sleeping, feeling sorry for myself and watching funny videos on You Tube to cheer myself up. Videos that wouldn’t be funny should they happen to you. A particularly funny one was a Best Man accidently knocking the Bride, Groom and Minister into the pool, whilst giving the rings over. I was naughty and laughed out loud. Hard. It cheered me up no end! Anyway I digress….

Today whilst feeling miserable at the thought of not being able to go out to my best mate’s Hen Do as planned, I came across an article on Katie Price on Face Book that had caused a stir.

http://m.bbc.co.uk/news/blogs-ouch-24763564

You may already have read about it, as it is spreading like wildlife across FB, Twitter and the disabled community. Now this isn’t the first time a Public figure has spoken out inappropriately.We all remember the ridiculous comments that Colin Brewer made. Eurgh I still shudder at the thought of his vile words. I wanted to respond to him, but never summoned up enough energy to put it down on paper, instead I just ranted about it to my husband, which I am sure he loved!

This time I felt compelled to respond to Katie. I think it is because I felt we have been mispotrayed by someone from our own community. Someone who goes through similar struggles to us.

As a parent and more over a parent of a disabled child we are constantly judged. Katie is no stranger to judgement. Society have scorned her and have blamed her for Harvey’s disabilities.

Judgments are made on people’s lack of knowledge and understanding. They judge on what they see. They add two and two together and get seven. I have always banged on about raising awareness to help people and society understand about disabilities.

So here I am responding to Katie, as she has wrongly judged the people in a community she is from. By making the sweeping statements she has, she has in fact misinformed society. She has labelled some parents as ‘lazy’ and ‘ignorant’ and made it sound all to easy to get help,missing out quite a few of the stages inbetween.

So Katie here is what I think you should know.

You said there is a lot if help out there you just need to look for it. I would love to know your meaning of a ‘lot’ of help. Any help and support we do receive is a postcode lottery, with where you live impacting on how much support and how often you receive it. Some parents see therapists on a weekly or fortnightly basis, others have to wait as much as six weeks between each appointment and there are some parents who don’t see anyone as they are on ‘waiting’ list, as they have no one available in their local authority.

After our initial appointment we had to wait for two months to see a Physio who we then saw every six weeks. We had to wait 4 months to see an Occupational Therapist who would provide Isabella with specialist seating which was another wait, as more paper work had to be sent. It took us a year to get adequate seating for the bath and a year to get the correct buggy for Isabella’s needs. It took six months before we finally saw a Speech and Language therapist.

Even worse than having to wait I know parents whose children have been turned down for support all together, as their child has been deemed not disabled enough!

Katie you say that we have to fill in the forms to get the help we need. Well I can assure you not all the forms are filled in by us. We were referred by our GP, as we had concerns about Isabella’s development. We had to push him to refer us, as he thought nothing was wrong with her. We waited 8 long months before we saw anyone.

Then once we were seen by a Pediatrician that’s when the real form filling came into play. There are forms for Disability Living Alliance, Mobility Allowance and Carers allowance to name a few. These are forms that you dread landing on the floor. They fill you with fear and dread. They tear you up emotionally asking you the same questions over and over again, comparing what your child can do compared with a child of the same age. Tears are wiped away,as you have to discect your child bit by bit, going over everything they are unable to do. Incredibly it took us 6 hours one night to complete DLA and by the end we were physically and emotionally drained. Now as if that isn’t enough some parents have to go through the process a second time if their application is declined. In some cases tribunal cases are held. Simple form filling it is not.

You say that some parents are too lazy and ignorant to look for the help they need. Every parent I have met in person or via the net is far from either. Everything is a battle we have to fight, fight and then fight a little more.

Parents of disabled children always stand together united to be heard. We blog, we tweet and re tweet to get our messages across. If someone wrongs us or shows us in bad light it is our job to respond. Society believe what they read and hear in the media and we don’t want them believing that we have it easy or that we the parents if disabled children are lazy and ignorant.

The thing is Katie people will listen to you. You are a popular celebrity with a disabled child, so Joe public will be inclined to believe that what you have said is right. Here are some other Mums telling you that in this case, the Price isn’t right.

http://theaandnatesmam.blogspot.co.uk/2013/11/i-bit-cross-katie-price.html?m=1

http://complicatedgorgeousness.blogspot.co.uk/2013/11/i-am-lazy-and-ignorant.html?m=1

http://orangethisway.blogspot.co.uk/2013/11/if-i-were-katie-price.html?m=1

http://areyoukiddingney.wordpress.com/2013/11/02/mrs-d-speaks-out/

Home from Home….

I am sitting here in the warmth of Bahrain and the warmth of my parent’s love. This is my second visit of the year, both Isabella and I are extremely lucky to be able to have breaks away like this in the sun. We are into our final week of a relaxing five week stay.

Now in my last post I talked about not having enough hours in the day and I was hoping to find time to catch up with my blog and photo books during this break away. If I am completely honest I haven’t achieved quite as much, as I had hoped. You no doubt will be aware of this due to the lack of new posts! That said I have relaxed and have had a real rest.

I have been banned from the kitchen and any type of house work. My Mum is a proper Mum. She loves looking after people and I for one am not going to argue with that. From the minute Isabella and I wake up she is constantly on the go running around after us. Now don’t get me wrong, I tell her that I don’t mind helping out, but I get stopped in my tracks and told I am here to have a break. She knows Isabella is my number one priority and says that by her doing all the mundane jobs like cooking and cleaning, it gives me a break and prime time with Isabella.

She also takes Isabella out for walks and plays with her so I can take so I can take some time out. This means I can have a long shower, rather than a quick rinse, I can look through the cupboard and decide what to wear rather than raking through my floordrobe and it means I have been able to go the gym. The gym may seem an odd way to take time out for some of you, but now I do really enjoy it. I lose myself in the music and my real motivation is Isabella. You see the older Isabella gets, the heavier she gets and I want to be able to continue to lift her with ease, without any need for lifts and hoists in the mean time.

My parents live in a ten story apartment block and Isabella and I have our own en-suite room. This is perfect, as it means we all have own privacy and there isn’t a queue for the toilet or shower in the morning. It also contains the mess, as we tend to play with a lot of toys throughout the day! This is our fifth visit to Bahrain now and my Mum and I have tried to make it, as relaxing and homely as possible for Isabella.

Back at home Isabella has her own bedroom and playroom. Her Playroom is very bright and visual and filled with an abundance of sensory toys and lights, we have tried to recreate the same thing here in Bahrain.

We have floor mats so we can play and do Isabella’s daily physio in front of the mirror. We have a music box, role play box, books, soft toys and sensory toys. We have a beautiful disco light that dances in varying colours all over the ceiling and walls.  We are always finding new things to add to the room.

My Mum spent hours downloading images from the internet and laminating wall and flash cards. When we leave the room stays the way it is. My parents say it is our room after all. Her toys are just put away and brought out again for the next time we visit.

Now you may wonder where my Dad fits into all of this. Sadly he has to work during the week, but he has the weekends off. So we make the most of the time together. We do get to have breakfast and dinner together on most days, where we tell him all about what we have planned or what we have got up to that day. Isabella always has special cuddles with Pops in the evening to make up for the time she missed with him in the day. This is why weekends are great, as we get to spend them together.

We all eat together in the kitchen, the main hub of the house. Isabella loves watching my Mum potter and dance around the kitchen and my Dad loves having a full house again. When he first moved to Bahrain 7 years ago, he was completely alone in the flat, with just a fish for company.

While my Dad is at work during the week, we fill our days (after our respective physio and gym sessions) with lunches out, catching up with friends and walks in the sunshine. When it is too hot outside we walk in the malls. The malls out here are huge, every mall has it’s own children’s play area, as for the most part it is too hot for children to play outside during in the day.

The children’s play areas feature soft play areas, inflatable bouncy castles, gaming machines and rides. Now the one great thing is that most of the rides here allow me to ride with Isabella. This has been amazing, as usually in the UK Isabella misses out on rides that require her to sit independently, here she can just sit with me on my lap. Not only to I get to ride with her and listen to her giggle with delight, as we ride up and down or round and round, we both get to ride for free. Here in Bahrain any child with special needs rides and plays for free, along with their carer.

We are also very fortunate that the apartment block has it’s own roof top swimming pool. You all know how much of a water baby Isabella is, so the pool is a real hit! At the start of the holiday we did night swims just before bed, as it was just too hot in the day and Isabella also has an aversion to the sun, but more recently we have managed to swim before dinner when it was still light. Day or night Isabella loves to swim…

Mondays are busy, as well as the usual things we get up to, we also go to our Kindermusik class. Tomorrow is the last class, another reminder that our holiday is drawing to a close. All good things must come to an end and the added bonus is we get to see Daddy very, very soon, as we have missed him lots.

We still have another fun packed five days to fill, but we would like to say a MASSIVE thank you to my Mum and Dad aka Nuna and Pops, for a wonderful time. You really are the best parents/ Grandparents anyone could ask for…..xx

Keeping on top and staying there..

It’s nearly been two months since my last post. Two whole months. Obviously a lot has happened, but it is frightening to think that so much time has passed and so quickly. I really feel like time is running away from me. It is sad to think that the summer is almost over.  In the last couple of months we have had a family holiday up in Yorkshire, Isabella had horse riding therapy sessions, my parents came and went, we caught up with family and friends and we enjoyed some glorious fun filled days in the sunshine during the heat wave.

The weeks appear to be rolling into one, before we know it we have arrived at the weekend and it seems to finish as quickly as it starts. Like most people, I always have a list of ‘things to do.’ It has to be a physical list, as if I don’t write it down, it doesn’t get done. Having said that some items on my list just getting constantly moved to the ‘new’ list. For one I have thousands of photos of Isabella and holiday photos that I want to put into scrap books and photo books. Usually the things that I ‘need’ to do take president over the things that I “want” to do.

I want to write my blog. I want to sort my holiday photos out. I want to plan my next holiday. I want to read a book for pleasure and sometimes I just want to do nothing. I just want to do sweet FA.

The obstacles stopping me doing what I want are there are not enough hours in the day and simply things that ‘need’ doing are obviously more important. I need to cook, clean, tidy. We have hospital appointments, daily physio sessions and home visits. I have letters that ‘need’ writing and phone calls that need to be made.

Life is fast paced and at times it feels like I am chasing my tail. Like most people I feel that the feeling of achieving something on my list is short lived, as the minute I achieve one thing another is added.

Isabella unlike other children cannot entertain herself. She cannot sit unaided for longer than a couple of minutes and she cannot hold toys to play with them. This means I have to do small jobs that don’t take too long and leave the rest until the evening when Isabella is asleep.

Some of you may have a wardrobe, I have a floordrobe. My wardrobe starts off tidy and gradually gets messier and messier. The clean washing gets launched in the cupboard with the intent of being put away properly, this rarely happens. Then a few days later another pile is added to the pile. I must add these are clothes from the line. I never iron, unless it is an absolute nesscessity. The way i see it, it is a) boring and b) once less job for the list. Then comes the inevitable moment when I need a particular piece of clothing and I rake through the wardrobe like a woman possessed, angry at myself for not putting it away. The clothes get tossed onto the floor and here starteth the Floordrobe.

Then once a month or when it becomes impossible to find anything in my wardrobe, I begin operation clean up. This takes a while, as I find not only my washing, but tee shirts that Paul has been looking for, for the last week…An hour or so later my wardrobe is returned to it’s rightful state and I tell myself, it would be much easier to put them away properly in the first instance. Easier said then done. Something always pops up. The phone rings, the door bell goes, dinner needs cooking, Isabella needs me. I am sure some of yoy can idenifty with this.You know the drill.

It’s not just my wardrobe that gets neglected. Once a month paper work needs filing away. Once every couple of months the bits and bobs drawer becomes virtually impossible to open, when it finally does open I am attacked by some out of date coupon.

Getting on top of things gives me a feeling of satisfaction. Currently my wardrobe is tidy, the filing has been put away and I am writing my blog. The house is fairly tidy. Sadly no photo books have been made.

However this weekend I am doing what I want. Isabella is in Daddy Day Care and I am finally going on one of my best friend’s Hen Weekend, which after months of planning and re adding to the ‘list’ has finally come together.

Strange I should be relishing a full nights sleep with no listening out for Isabella; yet I chose to blog…no doubt on Monday my list will have grown ten fold and I willbe dealing with it on a three day hangover, but it will be so worth it.

Who knows may be one day I will be on top and I will stay there. ..a girl can dream can’t she!

SWAN Song Part 2

WOW. July 1st was the last time I posted. It has been such a long time since I have posted here, on my blog. I have so much to say but never seem to find the time. As you all know (as I have harped on about it a fair bit) SWAN has been a major part of our lives (and still is) on our journey with Monkey in the Jungle.  So I decided to write a second part to the original SWAN song from last year…. I promise I will follow this up with all the posts I have been promising myself to write….

 

 

Over a year ago,

I joined SWAN UK,

A place I fell in love with,

And a place I will stay.

 

At this time,

The family was quite small,

But everyone of us,

Stood very proud and tall.

 

We raised awareness,

To get SWAN known,

And to find other families,

Who were standing alone.

 

Time went on,

and our numbers grew,

The word was out,

We were no longer a few,

 

In over a year,

We have grown seven fold,

And no signs of stopping,

As others are told.

 

Times have changed,

And the group is so vast,

With posts and pictures,

All coming so fast.

 

I pop in when I can,

To say hello,

And it’s lovely to hear,

From those that I know,

 

To those of you,

I have yet to meet,

I am glad you found us,

And joined our fleet.

 

Finding SWAN meant,

Finding a Place to belong,

And within a few months

I wrote my SWAN song,

 

I may not always comment,

Or always lend an ear,

But that doesn’t mean,

I am not here.

 

SWAN’s foundations are,

Built on honesty & trust,

A sense of humour,

Is definitely a must,

 

We share our feel goods,

Our highs and our lows,

Our worries, our fears,

Our strife and our woes,

 

When we got a diagnosis,

I didn’t leave SWAN,

As I wanted the friendships

And support to go on,

 

But I wanted to find others,

To find out more,

But found very little,

Behind the PMG door,

 

So with another Mum,

In the hope we’d be heard,

We set up a charity,

To help spread the word,

 

We have feel good Fridays,

And share in the same way,

And everyone is thoughtful,

and kind in what they say,

 

Like SWAN in the beginning,

Our family is quite small,

But in the same way,

We all stand very tall.

 

Please like our page,

So our family can grow,

And be like SWAN,

With more in the know.

 

 

By Tracey Gardiner

https://www.facebook.com/PolymicrogyriaFamilySupport