I’m still standing…

Taking each day as it comes, one step at a time, has and always will be our philosophy. No-one knows exactly what the future holds, but they have some vague idea. We on the other hand really don’t know; we don’t know if Isabella will ever walk or if she will ever talk. So we take each day at a time and we let Isabella lead the way. We have mountains of hope for Isabella and support her in every way we possibly can.

About 18 months ago Isabella’s Physio gave us a Standing Frame and like Ronseal it does exactly what it says on the tin. It is a frame that Isabella is strapped into and it forces her legs to maintain a standing position. I use the word ‘forces’, as Isabella doesn’t naturally bear weight on her legs. Thinking back to that day it was a very surreal moment, as I had never seen Isabella stand before. She looked so tall, it was amazing. Sadly not only did she look tall, she looked terrified and she looked like she was in pain. In the split second she was standing tall and I was standing proud, she lost it. Her face screamed out to me, ‘let me out Mummy it hurts!’ Her face immediately became red with tears and in an instant she became inconsolable. I tried singing her favourite songs and I put on her favourite music. Nothing worked. She screamed louder. It felt like my heart was being ripped out of my chest. My eyes filling with tears and swallowing hard, I looked at the Physio. She looked at her watch and said, ‘Okay we can take her out now, we don’t want her to hate it’. Isabella had managed 2 minutes. As a Mummy it felt much longer and I am sure Isabella thought so too.

I took her out and the minute she was in my arms, the screams turned into a silent sob and she tried to regain her breath. With her snotty nose and wet face pressed against me, I gave her the biggest squeeze and told her she was such a clever girl. I didn’t feel like a clever Mummy. I felt awful. I knew that the standing frame would do her good, by building and strengthening her muscles in her legs, but seeing her get into that state by something I had done was not a nice feeling.

After a while she calmed down and all was fine again. The physio assured me it was natural and it would understandably take some getting used to. She advised that we did it gradually and slowly built up the time that she was in there. I remember her saying, ‘Before you know it she will be in there for an hour watching the TV!’ I remember thinking, ‘An hour!!’ and my face must have been as easy to read, as she reassured me it would be fine and we would get there.

So following her advice a few days later Paul and I together decided to put Isabella in the standing frame. We had been playing nicely together all three of us and Isabella was all smiley and giggly. Although we were both anxious about putting her in we didn’t let it show. Going in the standing frame was going to be fun. So we reached for the shoes and started singing, ‘We’re putting on your shoes, we’re putting on your shoes ee ai adio, we’re putting on your shoes!’ No sooner had Isabella clocked the shoes, that smile had turned into a frown. Now Isabella as well as not being able to bear weight on feet, also curls her toes up very tightly and her feet are not flat, they tilt to the side. For this reason we had never put shoes on her previously, as for one we were worried about causing her pain and secondly because of her toe curling we could never get the shoes on.

So here we both were trying to put leather specialist boots on her called Piedros. Now it had been a struggle for the Physio to put them on but Isabella had remained calm, as that time she didn’t know what was to follow. This time she knew and very soon the frown began to tremble and her eyes began to fill up. Her toes seemed tighter than ever and she was wriggling furiously. After what seeemed an eternity the shoes were on, but Isabella was in a state. Now it was the job of two novices to try and stand this wriggly worm in the standing frame. It was a huge effort. Paul and I were hot and flustered and Isabella was screaming louder than ever. We managed two minutes, the screams were much louder than the first time.

We tried to take her out quickly, but even that proved difficult. She was finally out and only wanted Mummy to calm her down. Paul and I looked at each other. We didn’t have to say anything. We both knew that had been torture on all three of us and we were both not looking forward to repeating it. We hoped that the next time would be better.

The next time although we were both more anxious than the previous time, we once again didn’t let it show. We were jumping around acting all jolly making Isabella laugh, but again she was no fool the minute she clapped eyes on the shoes the tears started. It felt like Groundhog Day. It was no easier on any of us. But we managed the two minutes. I say we, Paul had to leave the room.

It became no easier, if anything it became harder. There were times she had gotten herself so worked out she didn’t make it into the standing frame and other times she (we) couldn’t even manage the two minutes.  With the constant battle and dread of the standing frame I was still thinking to myself how was she ever going to do an hour. I spoke at length about it with her physio. I asked her if we were hurting her and she said Isabella may find it uncomfortable. Her face and screams read more than uncomfortable to me. She said that she would get her some gaitors, which are velcro pads with metal strips in, which straighten the calfs below the knee. The gaitors arrived and we tried them. This made the job even more tricky as she would wriggle even more and when they were finally on it was even harder to get her into the standing frame.

So even with the gaitors the task of the putting Isabella in the standing frame was huge. The physio suggested that may be we try a different type of standing frame. So it was wheeled away and for a while we breathed a sigh of relief, the contraption that was causing us all pain was gone, even if it was for a short time.

In the mean time we tried standing her in front of the sofa. We still had the same battle with the shoes and gaitors and the two of us acting as a standing frame was also quite a mean feat. Soon the new standing frame arrived. This looked like even more of a contraption and there was even MORE velcro. Great I thought more places to have to strap her into and restrain her whilst she is doing her best to wiggle out of it. This standing frame had a table. The Physio hoped that having toys to play with would distract Isabella.

Like the first standing frame, this was just as unpopular with Isabella, even though it has a flashy table on it. We couldn’t get past the 2 minute mark and due to the vast amounts of velcro it was even harder to get her in. I spoke to the physio again and asked her if this was normal. In her time she had seen lots of children with varying physical disabilities, but she finally agreed that Isabella was an exception. She admitted that she hadn’t seen children get as worked up as Isabella. She ordered Isabella some sandals, as she thought this would make the job of putting her shoes on easier. It did as we could flatten her feet and stop her toes form curling whilst we put on the sandals. Sadly the tears still flowed and the battle was just as huge. We still just couldn’t get past that two minute mark.

I did some research on the internet and saw that there were frames that were tilted rather than being straight up. I told Isabella’s physio and she said she knew they did them for adults but not for children! I told her I had seen them on the internet. She said she would see what could she  do. In the meantime however she finally agreed that she should take this standing frame away. This made us all very happy (and gave us more room in the Play room!)

Months passed and no mention of the new frame. I asked her how she was getting on with locating a new standing frame. Her face looked shocked and it told me that she had forgotten. She admitted she had and said she would get on to it! This only further confirmed my doubts and concerns with the professionals and the so-called system.

Finally after a huge wait we got the new standing frame. First point noted was LESS velcro and it had wheels, it was already doing better than its predecessors. There were still the tears and the fight to get in, but once in Isabella wasn’t as bad, there was an improvement, albeit small.  This filled me with hope. Daddy was away so Isabella couldn’t go in as often as it was a two-man job, but I still persevered with the sandals and trying to stand against the sofa on the days when no one was around.It was a little better but it was still struggle.

The months passed, Daddy was finally home and we had new sandals as Isabella’s titchy feet had grown. The first time she tried them, there was NO tears, not a murmur. I was shocked and sadly Daddy wasn’t around to see. I was so pleased. Not wanting to jinx it, rather than stand her up, I put her in her chair, she was as happy as Larry, I was over the moon.

So the next day with Daddy’s help we tried the standing frame. Once again the shoes went on smoothly and the transistion into the frame was just as smooth. Isabella was actually smiling. We couldn’t believe it. I was gobsmacked. We were gobsmacked. Isabella was STILL smiling. Not wanting to lose momentum we showed Isabella how excited we were and danced around with her and played with her and before we knew it 15 minutes had passed. A whole quarter of an hour – UNBELIEVABLE! Pleased as punch we took her out and praised her enormously. That was on the 19th August and since that time she has been in there 11 times for 15 mins each time. She is happy and so are we. We are immensely proud and I have now taken to singing Elton John’s – ‘I’m Still Standing’ to her!

Don’t you know I’m still standing better than I ever did
Looking like a true survivor, feeling like a little kid
I’m still standing after all this time…

SWAN Family Fun Day

Following in the steps of a lovely fellow SWAN Mummy, I thought I would share with you our experience of our first SWAN Family Fun Day. We recieved details back in March. Paul rang to tell me, as I was staying with my parents. The minute he told me I was desperate to go, it sounded amazing; meeting other SWANs and their parents, in a venue built specifically for adults and children with Special needs. I didn’t want my litle family to miss it, so I made Paul send the application form back immediately!

As the time drew nearer I was even more excited, as over the last few months I had made some amazing friends through the group on Face Book. As I have previously mentioned SWAN are my second family. We are there for each other, through the good times and the bad. In our SWAN family we feel safe. Safe in the knowledge we belong and that we are never judged.

SWAN have been an amazing support network for me while Paul was away. I couldn’t wait to meet these SWAN Mummies and Dadddies and give them a ‘proper’ hug rather than a ‘virtual’ one. I couldn’t wait to see them in person and put names to the faces I had seen on my computer. Equally I couldn’t wait to meet their beautiful SWANs (not forgetting their siblings), the reason we all were brought together in the first place.

The morning of the Fun Day arrived and I had butterflies! I was excited. Excited to be meeting just some of the people I felt like I already knew. Excited that Isabella would be going to a place where she could access everything, with little or no help.

We arrived at the venue Thames Valley Adventure Playground http://www.tvap.co.uk/ and put on our name badges and took a walk around it was fabulous. There was a sand pit, water guns, special needs swings, a wheelchair swing, roundabout, a boat, a plane, a train, slides and a castle and these were just some of the things available outdoors. Everything was wheelchair accessible and made ‘safe’ for our SWANs and children like them.

Sadly over the last few weeks Isabella has started to take a serious disliking to all things outside that move or that can make her move. We tried to take her down the slide with Daddy and instantly she became extremely distressed and very upset. I am never phased by these situations, but people staring and giving disapproving looks can be uncomfortable and make me flustered. It was so refreshing, as there were no stares, no looks of disgust, just looks of reassurance that said, ‘It’s okay we understand. We know what it is like.’

That part definately felt good; knowing that we didn’t stick out, that no-one was talking about us, that no one was awkward around us. In fact the complete opposite. We were comfortable around each other and asked each other questions freely. In fact Paul and I spoke to some SWAN parents over lunch and after just a few minutes it became very evident our SWANs were extremely similiar. In fact their SWAN had gone through a phase of not liking going on rides and swings as well. In a strange way it made me feel happy. Not happy that their Daughter had gone through what Isabella is going through, but happy that they completely understood us and they could completely empathise.

Isabella was much happier indoors, as it was much much cooler. Isabella has a huge aversion to natural light and dosen’t cope very well in the heat. Having said that who does? We never have the chance to acclimatise in the UK it’s usually really cold or really hot!

Once inside I saw lots of little scrumptious faces I recognised with their parents. It was a bizzare feeling I really felt like I knew these people and meeting them in person confirmed they were just as lovely and understanding, as I had first thought.

Inbetween lunch and a serious amount of chatting, (not just Mummy surprisingly enough) we managed to squeeze in some fun time with Isabella in the soft play area, Music Room and Sensory Room. She loved them all. She particularly loved playing the drums with Daddy and found it hilarious when Daddy was trying to play the drums like a Rock Star would! The sensory room was a hit, that was probably due to the fact it was very cool, as it was air-conditioned!

Isabella loved having cuddles on the sensory swing watching all the beautiful colourful lights. It was nice to be able to play in a soft area where it wasn’t rammed to the rafters. This meant we could play with Isabella in the ball pool and not worry about other children getting over excited and falling on her. Sadly children don’t know that Isabella cannot move out of the way or dodge a flying ball.

There was also a Magician booked, but due to the blistering heat that had really cranked up by mid afternoon it was just too much for Isabella and Mummy and Daddy! We headed inside and cooled off with a drink and found more familiar faces to chat with. Sadly there was just not enough time to chat to everyone!

The afternoon was rounded off with a group photo of everyone. A excellent momento of the day. The day was truly a huge success and we cannot wait for the next one. I would just like to thank Lauren, SWAN UK, Genetic alliance and all the volunteers for organising it and giving up their Sunday to make it so special for all of us.

So there it is proof in the pudding of how SWAN UK is so important to our family and families like ours. Without SWAN UK and the support they recieve we wouldn’t be able to enjoy days like these and meet families in the same boat. It was most certainly another special day that will sit happily in my memory.

Without a Diagnosis Documentary…

Earlier this year, Kat Williams, a Trainee Journalist, who also follows my blog decided that she would do a documentary following three SWAN families. She hoped that it would increase public awareness and understanding of SWAN. She wanted to highlight what SWAN families go through and the hope that the Sanger Institute are providing through the DDD (Deciphering Developmental Disorders) study. I for one was very excited that someone outside of the SWAN community was interested and moved enough to dedicate their time in spreading awareness.

I am pleased to say that the documentary is finished and it it brilliant. I hope that you find the time to watch it and share it with your friends. I also hope it further deepens your understanding on what life is like for SWAN families.

So this post is dedicated to you ‘Kat Williams’. I would like to say Thank you Kat on behalf of all SWAN families for spreading awareness and taking a genuine interest. As far as grades go Isabella and I would definately award you an A*!

Please click on this link to watch the video and to learn more about the Science, SWAN UK and three SWAN families used in the documentary. http://withoutadiagnosis.wordpress.com/

Two become Three..

Before Isabella, it was just Paul and I. We had no commitments and no responsibilities (well except for work!) We did what we wanted, when we wanted (when we weren’t working!) We could (and very often we would) do spur of the moment things such as; random road trips to Paris (never again I may add), all day sessions in the pub, off the cuff weekend breaks and monster DVD duvet days. We just did what ever took our fancy.

When I found out I was pregnant, to some degree that all changed. We now had a responsibility. We had a little person growing in my tummy to consider. We now had ‘Peanut’. Obviously the drinking stopped for me and things became less random, as we had Peanut’s future to consider. We had things we needed to buy. Life had changed, but it was by no means boring. It was anything but. Sure we didn’t go out drinking till all hours, (well didn’t) but we went out shopping to buy things for Peanut. We would spend hours talking about Peanut and what Peanut would look like, where we could take Peanut on holiday, what interests and hobbies Peanut would like. Peanut wasn’t even here yet, but was already a massive part of our lives. On the advice of everyone with children we did take the opportunity to make the most of the time together before Peanut’s arrival. So we went out for lots of meals, days out, trips to the cinema and a month before Peanut’s due date a lovely romantic weekend away.

When Peanut arrived our little two became a wonderful three. We no longer came first, Isabella did and still does to this day. Everything we did was with Isabella in mind. Her needs always come first. See my post The Bigger Picture.  I am Isabella’s primary carer, I haven’t gone back to work so I can look after Isabella. Even though I spend all day with Isabella and know her inside and out Daddy obviously plays a massive role in her life. She idolises her Daddy and loves the time she spends with him, when he is not at work. So you can imagine my shock and sadness on hearing the surprise news that Daddy would be leaving us for four months. Our three would now be going down to two. I was devastated.

This time the two would be different, Isabella and Mummy. I have to say I didn’t want Isabella’s Daddy to go and I knew that we would both miss him like crazy and we did. Having said that the time Isabella and I spent together was amazing. Like when it was just Paul and me, Isabella and I had no one else to worry about. We could do what we wanted when we wanted. Not that we can’t do it when Daddy is here, it just meant could do things in the week and not worry about Daddy missing out. We took lots of road trips in the car to see family and friends, went to Cotswold Wildlife Park (lots), we had days out at theme parks and Zoos, had picnics in the sunshine and most importantly I had lots of cuddles as I had Daddy’s share. Best of all no Football or Sky Sports News on the telly!

All that said it was hard work and I would just like to say ‘Big Respect’ to single parents. You really are rockstars! It was only four months and I know that some servicemen can be away for a lot longer so we were very fortunate. I say hard work because you literally have to do everything. The day was no different, as I always look after Isabella in the day, as I said. It was the evenings where it didn’t stop, there was no-one to wash up whilst I bathed Isabella or vice versa. There was no one to hang the washing out or bring it in. There was no-one to help with the jobs that I couldn’t do in the day. There was no one to help with Isabella whilst I cleared up Daisy’s mess! Daisy our dog having a suspected tumour couldn’t have come at a worse time. Unexpected trips to the Dog hospital in Birmingham were certainly not on the agenda! Seriously single mums with more than one child you are awesome!

Like anything I just got on with it and got into a routine. A routine that meant I wasn’t sitting down til late, (sometimes 10:30pm) but a routine nonetheless. When I finally did sit down it was my time and I was determined to do something for me. Sleep would have been a better choice, but I wanted some me time to watch some trashy TV, read a book or watch a film. It was actually when Paul was away I finally started my blog.

The blog became my companion, my release, my friend. I looked forward to sitting down, no matter how late and writing a post. Some nights that was all I would do and it would be until silly o’ clock in the morning and boy did I pay for it the following day. So with the blog and the support of my family, friends and SWAN family the days rolled into weeks, the weeks into months and before we knew it Daddy was due home.

On the 28th July two became three once more. Daddy was home and we were over the moon. Isabella was so excited when she woke and found Daddy was home. It took a while to get back into the swing of things. It felt strange having someone in the house, I must have jumped out of my skin a dozen times at least. Situation normal has once again resumed. Daddy putting things in the wrong place and moving things, some things never change! Ha ha! Then of course me talking too much and too loud and when a film is on! It makes me think of the Lee Evans sketch. Skip to 4:50 or watch the whole sketch it’s hiliarous!

Welcome home Daddy! We have missed you xx

OXFORD MAIL Newspaper Article 8th August 2012

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CHARITY MATTERS: Swan swimathon is a stroke of genius

CHILDREN and parents made a splash to raise cash at a fundraising event in Oxford.

  A “water babies” swimathon at Westminster Sports Centre, North Hinksey, raised money for the charity SWAN, which stands for Syndromes Without A Name.

  And little Isabella Gardiner, who is helped by the group, was there. The two-year-old, from Carterton, suffers from an undiagnosed genetic condition which means she can’t walk, talk or grip. Her  mum Tracey Gardiner said: “We love our time in the pool with water babies. It’s Isabella’s ‘normal time’.

“Her genetic condition is not apparent and our teacher is great at showing us how to adapt activities in each class.”

Proceeds from the week of activities will be presented to Tracey and Isabella in the next few weeks.