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!'

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!

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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.

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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.

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

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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….

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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.

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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.
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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.

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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.

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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.

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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