The Disability Diaries : Recognising Progress

Quite often I write the 'Disability Diary' posts when I am frustrated or sad about an issue.  Writing about it is my way of settling the mind or venting the anger.  It doesn't solve the problem but it helps clear my mind or form a plan.  Sometimes it feels a little like positioning the pieces of a jigsaw puzzle into place.  After that there is just the fiddly task of getting the pieces to stick together.

 

A few months back I was feeling particularly overwhelmed by life as a parent of a child with severe disabilities.  We had decided to move to a new area, and it felt like we were starting all over again what with struggling to get the professionals in place that we need for J1 to have all his needs diligently monitored.  Just to get a phone call back, and not necessarily from the correct person, seemed to take four or five calls and messages.  It seemed we had moved but before we could get to the right place for J1, first a huge brick wall needed to be scaled.

 

A few months on and slowly I feel someone has started throwing us some tools to help climb that wall.  The school review saw a referral for a CND put into motion.  The school OT finally cleared up the confusion about what area we came under and we now have an OT, with an actual name!  With her in place, several of the other issues are now being sorted out.  As I write this post I am waiting for a hoist to be delivered and some Wendy Lett slide sheets for the bed.

 

Wendy Lett slide sheets are a smoother material cover that should make it easier to move J1 back up the bed.  What with the rolling him from side to back to change his pad and get him dressed, he usually ends up out of position.  I am a 60kg female and my son is 54kg.  To try and pull him back up the bed, against the friction of the bed sheet is no easy task.  I don't expect it to be easy but I am always looking for ways to make it easier.  To know these sheets have been available but never suggested to me before is quite frustrating.  He is 10 years old, and we have been aware of his disabilities for 9 of those, yet I still feel as in the dark as when we started.

 

Saying that, I also have 9 years of skin thickening experience and now know sometimes stamping the feet is the only way to get anywhere.

 

On a further note in praise for the OT, following on from a general discussion we had regarding 'personal care' for J1.  When J1 goes to his grandparents for respite he has an adapted bathroom, thus a shower, however, our house is only rented so I have to bed wash him from head to toe every morning and, sometimes, depending how warm the day has been night as well.  We make it fun and it does give J1 quite a good physiotherapy session as each body part gets moved individually whilst being washed and dried.  But, particularly in the summer months and as he gets older, a good 'soak' is quite lacking.

 

Cue, The Water Genie.  This ingenious item is essentially a blow up paddling pool for the bed.  It then comes with a portable water unit with attached shower head that provides approximately 10 minutes of continuous warm water.  After washing it sucks all the water back out.  Now, I am very excited that we are going to get the opportunity to try one of these, despite a few reservations.  No matter what equipment you get to help, they all have something you haven't thought of.  For example, in this case I am wondering how quickly it will remove the water because for the length of time you are removing the water, J1 will be lying wet and probably getting a little cold whilst waiting for the water to disperse so he can be dried - see what I mean? 

 

Another example of this is hoisting.  Yes, a hoist is essential and much needed and we could not live without one.  But people say to me 'Well you have a hoist don't you?' when I say it is difficult for me to move J1 around as he gets increasingly bigger.  Like it sprinkles fairy dust over him and magically lifts him through the air and into his seat.  The reality is this; a hoist is a large and heavy piece of equipment before the weight of the person using it is added into the equation and to move it on carpet is pretty damn hard.  Positioning its huge legs so you can get close enough and in exactly the right position takes patience and precision.  Before you even get to that stage you have to get the hoist sling in place.  And that is so much fun. 

 

The hoist sling needs to go underneath the body and be in exactly the right place otherwise the lift will not be at the correct angle and not lower into the chair in the right position.  To get it underneath the body, J1 must be rolled onto this side (just to set the scene accurately J1 can not assist with this, his weight is, although I hate to use this expression 'a dead weight').  Once on his side you must try and keep him there, whilst laying the hoist sling as flat and accurately as possible over the length of his body (all along the back from top of his head to about his knees).  The aim here is to try and get as much of the sling under the side he is laying on as this makes it slightly easier when you roll him back and you have to try and pull the sling material through so he has equal amounts either side (even being a veteran at this usually requires more than one attempt).  Then all the straps (six in all) can be lined up ready to hook up to the hoist arm.  Easy as hell hey?! 

 

But as I said, this post isn't to gripe.  I am fully aware in the case of disability, nothing is easy.  All these things are just to try and make life easier.  And I am so relieved that we now seem to be getting somewhere with it all.  Equipment is just one small area in a huge sea of things he needs to make his life as pain free as possible.

 

J1 should, this very week, be receiving a referral to a specialist spine unit.  This was never an area I wanted to have to venture into but the reality is, we have and we just have to deal with it.  Our job is to ensure he is seen by the best people he possibly can be.

 

We have managed to get him into a new eye clinic and also referred for a functional assessment (eyes and brain processing).

 

We persevered and had a very good appointment at wheelchair clinic.  For sometime we have been wanting to see if a specialist chair called a CHUNC would be suitable for J1 and I am pleased to report we are going to have a two week trial with one.

 

All those pieces of the jigsaw that seemed so jumbled and a mountain to sort through are now lining up and with more patience and methodical work on the part of everyone involved, should start building a better picture for J1. 

 

And that is the only thing that matters.

 

This is always going to be an on-going and continuous way of life for us.  So for now, it is a moment to celebrate moving forward, that is as important as complaining when we aren't.

 

 

 

Coming Soon...

A series of Disability Diaries posts looking at travelling to Florida, USA with a disabled child.

Featuring.... This cool dude

This little monster

These awesome guys

 

And...this crazy lady!

The Disability Diaries : Netbuddy - A great resource

As anyone who comes across my blog is aware, disability and special needs feature a lot, because I have a son who has Cerebral Palsy and consequently disabilities and special needs.

 

I was recently contacted, because of this, by the website 'Netbuddy'.  They asked if I would be happy to feature an article on their behalf.  I was unsure what Netbuddy was at first, but soon found out and was more than happy to help.

 

Netbuddy is a fantastic resource for parents with children of learning disabilities, autism and special needs of any description.  It is a place where parents can come and share information - and as any parent of a child with disabilities and / or special needs that is vital as clear and real information can be hard to come by sometimes. 

 

The article below outlines much better than I can the importance of Netbuddy, as it is written by the amazing women who founded it.  Please share this post, so as many parents as possible can be made aware of this website - the more people involved in it the better it will work.

 

 

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Parents are the real experts says learning disability charity founder

Deborah Gundle talks about her self-styled ‘mumsnet for special needs’ www.netbuddy.org.uk and how other parents are the key to making it work

When my oldest son Zach was born, I knew instinctively that something wasn’t right.  At 7 months old, he was diagnosed with Angelman syndrome, which meant he’d grow up with profound learning disabilities.

Looking back, I wish I’d asked for more help from my family and friends in those early years, because I know now they would have been happy to give it. It’s often hard for other people to help, unless you tell them exactly what they can do.

One of the things I struggled with when Zach was little was how much time and energy I’d spend solving day-to-day problems. Zach was still crawling till he was about seven, and I spent ages trying different things to protect his knees, which were always rough and bruised. Finally I hit on the perfect solution – goalkeeper trousers for kids, which were padded in all the right places. But Zach was nearly six by then, and I couldn’t help wishing I’d known earlier.

That’s how the idea for Netbuddy came about. It would have been so helpful to have some sort of practical handbook, with tips and ideas for all the problems I encountered when Zach was growing up. But of course nothing like that existed.  I knew other people had probably solved the same problems I was dealing with, and I wished I had access to their knowledge.

Health visitors and professionals were, of course helpful, but unless you have direct experience of learning disability – unless you’re living with it day-to-day, you can’t really know what it’s like.

I launched www.Netbuddy.org.uk two years ago with the aim of capturing that huge wealth of expertise that parents and carers have, and making it easily available for other people to tap in to.  I wanted to create a place where people could submit and search for tips on a whole range of practical issues – everything from bed-wetting to coping with challenging behaviour.

Of course, when you’re a parent to someone with special needs, caring doesn’t end when they become an adult. So Netbuddy offers tips for people of all ages. Zach is 18 now, and he’s going through one of the most important stages of his life – the transition from children’s to adults ‘ services. I value any advice I can get from other parents who have already been through this process.

That’s what Netbuddy is all about – passing on what you have learned to others who can benefit from it.

Netbuddy works because people in the learning disability community want to help each other. If they can offer some support or advice that will make someone else’s journey easier, they will.

I am delighted by how quickly the site has taken off, and by the strength of the community we have already developed at Netbuddy. But in some respects I’m not surprised by it because Netbuddy fills a very basic need for practical problem-solving that everybody has.

We’ve had people writing in telling us that a tip they’ve picked up on Netbuddy has changed their lives. Sometimes it can be a really simple idea, but it might have given them their first full night’s sleep in 10 years or provided the breakthrough in toilet training they’d been desperate for.

Netbuddy has also hit a chord with professionals– teachers, nurses, therapists, support workers – who come into contact with people with learning disabilities through their work. They use the site to pick up tips and ideas for themselves, but also to pass on to families they support.

Last month, Samantha Cameron hosted a reception for Netbuddy at Downing Street. She described Netbuddy as a ‘vital resource’ for families who are affected by learning disability. It was wonderful to have that recognition, not just from someone so high-profile, but also from another parent. Having had a child with special needs herself, she really understood how important Netbuddy was.

It does feel like we’ve come a long way very quickly, but we still want to reach a lot more families and carers who could benefit from using Netbuddy. As parents, we have a goldmine of useful information at our fingertips, and it’s up to us to pass it on.

To find out more about Netbuddy, visit www.netbuddy.org.uk

 

Deborah & Zach

The Disability Diaries (The Life of J1) : Nine

Nine years ago today I was a new Mother of a day.  Eight weeks earlier than planned.  My baby boy was in SCBU High Dependency, covered in tubes, wires and face masks.  Rather than being in the peaceful surroundings of our warm and loving home, he was surrounded by loud, bleeping machines and nurses scurrying back and forth.  A wide eyed blond women sat staring at him, with a shocked expression, for 14 hours a day.  That women was me.  His mum.

I have written, numerous times about J1's birth, the fact that he was premature and the sad day we discovered he had suffered brain damage during the last hour of being in my womb and had been left with the condition Cerebral Palsy.  I have noted on many posts how severely physically disabled the Cerebral Palsy has left him and how we all face challenges on a day to day basis that we never knew were possible before J1 came into our world.

But in this post I want to talk about J1 making it to the ninth year of his life.  How I have realised over the last couple of years in particular, as we have sadly said our goodbyes to some children who J1 started school with, who have been taken as Angels and watched others fight for their lives and beat the odds, how lucky we are to have our little boy here to celebrate. 

I do not like to dwell on the fact that although J1 has a condition rather than a degenerative disease that will progressively get worse, there are factors within that condition that could threaten his life.  The fact that he suffered with Epilepsy in his younger years.  That he can have reflux in his sleep that could result in him choking to death if we were not close enough to get to him to move him.  That due to him not moving around his bowels to not get the movement needed to clear them easily, which if ever was left to take hold could cause all sorts of problems.  That because he does not walk his bones start to develop in the wrong way, which need operations to rectify.  Big operations, that come with all sorts of risks. 

These have to all be pushed to the back of my mind to get through the day, otherwise I would be a wreck sobbing on the floor.  However, every now and again I think it is important to take stock of these things and realise that despite all of those issues, he is a happy, joyful, cheeky and on a day to day basis healthy little boy.  That he trumps all of these negative possibilities with quite a gusty 'Ave That!' without even knowing it.

It is a joy to see my, once scrawny baby, who's legs were layered in rolls of skin because he didn't have any fat - eat his breakfast, lunch and dinner better than most other nine year olds we know.  To hear him sing along with the TV, even if we have seen the same programme a million times.  To watch him now interact with other, able bodied children his age, whereas once he would fear them.  To even see him be naughty and cheeky on occasion.

So in celebration of your ninth birthday J1, we thank you for being wonderful and appreciate everything you are.

The Disability Diaries (The Life of J1) : The Holiday - Ahoy Matey

Now we have taken the plunge and booked our Exciting Adventure to Florida next year there is still much researching and planning that is needed.

The flight seat is top priority and I think it has now come to the point where we are going to need to go and view what is on offer to ascertain what is going to be the best option for J1.  At this point in time I have concerns and I hope by going to actually see them they will be quelled.  For anyone wondering why this was not looked at before booking the flight - the answer is - it was.  We saw the picture of the seat insert to the chair and thought wonderful and fantastic.  Then, however, we got further details and it transpires that even though it should go up to a child age 11/12, because of the double hip operations J1 has suffered - which makes his hip width rather large - it will not fit him.  This leaves us with the adult option.  Thus, we need to go and check it out.

After much 'Google Map' time with my mum, I think we are happy that the hotels and areas that we have chosen as our destination are suitable with plenty of things to do for both adults and the children alike.  One of the activities we found is something that my mum has wanted to do for years (kid at heart my mum) - Go on a Pirate Ship.

A Pirate Ship you may ask?  Yes A Pirate Ship.  And at the beach you can do just such a thing.  After looking at the Captain Memo Pirate Ship website we couldn't see any information about whether it was wheelchair accessible.  What we did see however was an email address.  Pinging them an 'Ahoy There!' email outlining J1's accessibility issues in the morning I did not expect such a quick and friendly response.  

The same afternoon I obtained a reply stating that the ship would welcome J1 with open arms.  Was the wheelchair manual or electric, manual is easier to navigate around the ship.  Do not worry, they assured us, the crew is fully trained and can entertain children of all ages and abilities (or disabilities).  They advised us to go on a morning cruise as these tend to be quieter, thus allowing J1 easier movement around desk.  Book a few days in advance and we'll be having our faces painted pirate before we can sing an old sea shanty before you know it!

What a refreshing response this was.  I am so used to hearing, sorry we can not accommodate.  Or parts of the venue will be accessible but not all.  So now we are all really looking forward to this, and we have decided that if we go early enough into our week at the beach, if we love it we can always book and go again a few days later.

Ohhhh-Arrrrrrhhhhh Matey's!

The Disability Diaries (The Life of J1) : A Very 'Special Needs' Harvest Festival

I have noted on many occasions how highly I think of my eldest Sons, J1, school.  I believe his time at the school has enhanced his life in almost every way possible.  It is the school, I maintain, that turned him from saying two words into a chatterbox.  It is the school that has helped him to develop a wonderful sense of humour.  It is the school that has made him accepting of other children his age, instead of being afraid of them.

For those who have no experience of being involved with a Special Needs school, they may think it would be very different to a mainstream school.  In lots of way it is.  Along with the teachers there is a much higher ratio of 'teaching assistants' in each class.  The school is usually also host to a lot of 'Ists' on a daily basis.  For example, Physiotherapists, Occupational Therapists, Speech and Language Therapists, Music Therapists.  Outside of the classroom is an array of equipment; wheelchairs, standing frames, walking frames; mobile hoists; wedges.  There is usually a few people fixing and adjusting those pieces of kit. 

Instead of classes being host to a tiny cubicle with small toilet and sink they are built with a large 'changing place' and along with the more able-bodied childrens facility there is also a hoist, a changing bench and storage unit to hold all the individual supplies of pads.  There are an array of sensory rooms, soft rooms, quiet rooms - places children with the need for their own space can go and feel calm.  There is a full time on-site nurse to help ensure that all medication and intravenous 'food and drink' is administered correctly.

In the playground you will find all the usual items but in addition to this you will find a roundabout and swing that a wheelchair can be fixed onto.  A sensory garden with wind chimes and colour-makers.

However, in the midst of all these 'differences' many things are the same.  The school day starts at 09:00 and ends at 15:00.  They have morning break time and lunch time in the big hall.  They have Assembly on a Friday afternoon.  They have a school curriculum to work through, parent / teacher evenings, end of year reports and an Annual Awards Ceremony.

I did not know what to expect when J1 started.  I suppose I expected that he would be 'learning' a little in addition to his physical needs for Physiotherapy etc.  I did not expect him to be learning as much as he is - shame on me for not realising my sons capabilities and thank God for the school that they did! 

What I did not expect was that the children would participate in all the things I did at school.  I suppose I thought what with providing education as any school would and attending to all the extra needs of the children, they would have the time.  How wrong was I. 

 

Every year we attend the Christmas Fair, with many stalls being full of things the classes have made themselves.  It never fails to amaze me how they manage it.  We go along and are moved by the Christmas Play, with each class having their own starring moment.  Fundraisers are held each term, this one was a sponsored walk.  The entire school participates.  They have field trips regularly and a whole school outing in the Summer.  No child misses out, unless the parent feels it is necessary.  How a school does this, when catering for such a wide range of Special Needs is, in my opinion, pretty amazing.

 

One of my favourite school events however is Harvest Festival.  I think because I used to enjoy it myself.  It was exciting to go out to a different venue and sing with the school and perform whatever our class was doing.  Each year the local church opens its doors for our children.  We are treated to readings, songs, dancing and a reminder that we really should be grateful for the abundance of food we have available to us.

 

I think it is one of those triggers that it really is Autumn and I have already posted about how much I love Autumn.  It is also beautiful to see all the pupils doing something that every other school does, no matter what their disability.  It is a heart warming sight of inclusiveness that I am blessed and thankful for witnessing.   

The Disability Diaries (The Life of J1) : The Operation Part One

This particular 'Disability Diaries' post has sat in my drafts folder for some time.  This, I know, is going to be one of the hardest posts I have to cast my mind back over to write.  But it needs to be written.  I daresay I am going to have to write this in portions, in order to cope with reliving this period as it was one of the most traumatic of both mine and J1's life to date.

The first indication that something was happening with J1's leg, was that whilst laying flat his left leg would 'scissor' across the right one.  We would constantly uncross it, but it would fly back almost immediately.  The next happened whilst undertaking our physiotherapy regime.  When it came to exercises on his left hip we would hear a very distinctive 'click'.  After a little while J1 started to wince.  When this happened I knew we had to report it.

We were referred to Orthoapedic department for further investigations when J1 was three.  The Doctor did a thorough examination and requested some x-rays.  I was told that J1 would require surgery and that an appointment would come through to us.  Fast forward about a year and we were still waiting for an appointment.  Not being thrilled at the idea of him having to undergo surgery I had not pursued it, but as the discomfort for J1 because clearly more painful I knew I needed to take action.

After numerous phone calls it was established that J1 had 'slipped through the net' and that he would be put at the top of the list.  An appointment promptly came through for while we were on holiday.  After more phone calls a date of 4 July 2007 was confirmed.  I sailed along to this date, trying not to think about things too much.  I had no idea of what J1 was about to face.  J1 had no idea of what he was about to face.  In this case ignorance was bliss.

We arrived at the hospital early and I was told that J1 was first on the list so would be going down to theatre around 9am.  It had been difficult to ignore J1's indications for food and drink, so I was glad that he would be going fairly quickly.  If only that had been the biggest difficultly, we would have been laughing. 

J1 was only four years old.  His only words were 'Mumma' and 'Hello' so communication was mostly guess work.  He had no clue about what was going on.  The Doctor came to see us and noted that since the X-Rays were over a year old he really had no idea what he would be facing until he started the operation.  Firstly, he said that the 'scissor' effect was being caused by the muscle on the inside of the thigh tightening and shortening.  He would need to open the thigh and cut the muscle to try and release it.  Secondly the hip, because it wasn't being used for walking, was growing in the wrong way.  The bone was forming out of shape.  Therefore he was going to have to break the hip, put in a metal plate and reset it.  The third thing that may have occurred, I was informed, was disintegration of the ball socket. If this was the case he would have to try and rebuild it.

But it was all an unknown quantity as to how 'bad' all three of these issues had developed.  I curse myself to this day for being a coward and not chasing the operation date sooner.  Of course at the time I nodded and agreed with the Doctor pretending I fully understood everything he was saying.  The only thing I really understood was that it sounded horrendous.

As is standard procedure for operations I had to sign a consent form.  The Doctor rattled off all the things that could go wrong, reactions; infections.  Words swarmed around my ears as a pen was pushed my way.  I looked at the signature spot.  I had no option but to sign it, but felt I was signing to say 'Yes, do these awful things to my baby.'  I asked the question of 'What if we didn't have it done?' and was told that the hip would continue to deform to the point where even sitting would be extremely painful let alone any type of other movement.

As I signed I realised the true enormity of being a parent.  I had to see my child through this.  I had to be strong and let them take him down to theatre, happy and smiling clutching his 'Brown Bear'.  To hold him while they tried to get a line into the tiny veins in his hand to administer the 'magic sleeping milk'.  To be strong enough to let him be whisked off of my lap and ushered out of the door the minute his eyes closed.

I was told to expect to wait about two hours.  I would then be informed when he had been taken into the recovery room.  As I sat on a plastic chair where his bed would reside on the ward, with my mum for company I felt the sensation I had only felt once before.  One of complete and utter helplessness.  I had to entrust his life in those of the Doctors hands, just like when he had decided to enter this world eight weeks early.  There was absolutely nothing I could do but wait, and hope.

As time approached the three hour marker a nurse finally poked her head in to me.  I was expecting her to tell me that I would be taken along to the recovery room but instead she informed me that he was still in theatre as the operation was taking much longer than expected.  I was told he was doing well and they would keep me updated.

As the clock slowly proceeded on a further 60 minutes, I was again updated that although still in theatre they didn't expect things to take too much longer, but because he had been under anaesthetic for a long time he may take longer to wake up in recovery.  A painfully long four and a half hours after they started, I got the green flag that he was out of theatre.  I was asked to go straight along to recovery because unusually he had woken up very abruptly - just ten minutes after arriving - and was in extreme distress and very disorientated.

I was not prepared for what a sorry state he would be in.  As I walked in the door I had a sharp intake of breath.  Both of his legs were in hip to ankle plaster casts.  A pole was attached into the cast across his knees, so his legs looked like an 'A'.  Tubes and wires seemed to be coming out from everywhere with various bags of clear liquid hanging from the IV stand. 

 

The nurse got me straight to his bed asking me to let him hear my voice in the hope he would become less distressed.  It didn't seem to make any difference.  He should have still been coming out of the anaesthetic, it was like he was doing so but in a conscious state.  His cry was like nothing I had ever heard him emit before.  Pure pain.  Pure distress.  Pure horror for me as his Mother.

 

We were in the recovery room for almost two hours before his stats settled enough for us to be released back to the ward.  I had been informed, by a visit from the Doctor who had undertaken the surgery that things had been very bad.  He had performed the surgery to the muscle on the thigh (incision / scar one).  He had broken and reset the hip with a metal plate (incision / scar two) and unfortunately massive disintegration of the ball socket had taken place, much worse than anticipated.  Bone graphs had to be taken thus needing a further incision.  The Doctor told me that Bone graphs are extremely painful and this would cause J1 probably the most pain in the first few days.  Because of this the Pain Relief team had prescribed an anaesthetic drip to be delivered straight into his back for 24 hours.

 

By the time we reached the ward it was quite late in the afternoon.  J1 was still very upset (understandably).  I can't begin to imagine the pain and, more over, confusion he was in as I had not been able to explain to prepare him for what he was experiencing.  The same could be said for how I was feeling but that was not important at the time.  I knew it was going to be a long, slow recovery.  J1 could not really talk, he would not be able to tell me where it hurt or how he felt.  All he would have was tears and I would have to hope my Mothers intuition would know what to do to help him.

 

As shots of morphine were administered every 15 minutes, he would doze for about five minutes.  I prayed that in his drug induced sleep, at the very least, he would get some relief from the hell he was in.  In those few minutes of quiet my thoughts ran wild.  I wondered if being under anaesthetic for that length of time could have caused him more brain damage?  I wondered if the powerful drugs they were pumping into him would cause damage anywhere else, he was still so small?  I wondered how we would change his nappy without causing him excruciating pain?  I wondered how he would ever forgive me?  I wondered what I had ever done in our lives, that was so bad, that he deserved this?

 

I wondered those thoughts every time those quiet five minutes happened, for the duration we were in the hospital.  In a zombie, sleep deprived state, J1 and I suffered through what seemed like the longest days and nights I have ever known.  The make shift bed was never slept in.  Most nights I would pass out hunched over the bed stroking J1's hair because it seemed to be the only thing that calmed him.

 

Recovery had only just begun.  

Dreaming of Running

Channel 4, the official broadcasters of the 2012 Paraolympic Games, are running an advert at the moment.  It asks three gentleman, all in wheelchairs what they dream about.  One says he always walks again in his dream.  I think the other says he never dreams of walking.  The third laughs and says he doesn't know what they are dreaming about but in his dream he is just surrounded by wonderful women and doesn't take any notice if he can walk or not.

This really made me smile.  Then it made me think.  I have been doing that a lot lately.  I have been in that sort of philosophical mood, which doesn't always make me seem very happy.  But it isn't that I am not happy.  It just means that I am thinking.  About everything.  About nothing.  About stuff.  Sometimes my mind just needs to do that.  Maybe that is the writer in me.

It made me wonder about what J1 dreams about.  I can ask J2 and he always answers the same thing - 'Lion ROOOOOAAAARRRRRR'.  If that is true it may account for his truly erratic sleep behaviour!  But whenever I ask J1 he pauses, says 'Errrrrrrrr', pauses again and then sets to his default question -'Where is Daddy's car?'  This means you are not going to get an answer to your question.

So I am left wondering.  I am left wondering if he dreams of walking and running.  Does he dream of running around the playground, or competing able bodied in sports day?  Does he bounce on the trampoline until he feels sick and sweaty?  Does he run along the sea front running up and down the steps to the beach until we tell him not to do it anymore?  Does he run up the steps to the cafe to buy his ice-cream? 

I have a recurring dream.  Not everyday but always the same.  J1 walks into my bedroom and asks if he can wear his football shirt for school.  As wonderful as that is, when I wake up I get the crashing reality of life.  And that is painful.  Like when people say after they have lost someone, for that first few seconds of the day when you wake up, everything is perfect.  Then your memory comes to life and reminds you of days and events past. 

No matter how many years fly by, and how much I come to terms with / adapt to life as we now know it, the actual reality of knowing my son has brain damage is still a bastard.  It makes my heart ache with the longing to be able to change it.  It must be the biggest frustration in life that you will ever encounter - someone you love suffering with something, be it a condition or illness, and no matter what you do to help, aid, alleviate you know that you can't change it or stop it.

Maybe that explains my overwhelming need to keep in control of all other aspects of my life and my complete annoyance when I feel that is not the case.  My developing attitude that you must absolutely do what you want to do, if it is something that you have any control over being able to achieve.  Some people call that positive thinking.  I call it trying to make up for what I can't change or control.  A defiance that fate won't fox me into thinking I 'can't' control what happens.

Can someone that has never walked a single step dream what it is like to do so?  I like to think so - after all I dream of flying and I certainly can't do that. 

So, run little boy.  Run and laugh.

Published in SEN Magazine

The article I wrote for SEN Magazine was published this month.  It was thrilling to see my name in print!

If you would like to read my article, the magazine just released it online.   It can be viewed here (even though they say 'daughters' diagnosis and it should be son in the link - it is correct in the magazine and online article) :

https://www.senmagazine.co.uk/articles/1020-a-mother-tells-how-she-received-her-daughter-s-cp-diagnosis-from-a-most-usual-source.html

Special Saturday : The Special Needs Part of Our Life

This weeks #Special Saturday theme is to just generally sum up what is going on in your own world this week.  This is a good time to think about this because it is the last week of J1's school year.  Just yesterday we went on a fantastic school trip to Colchester Zoo.

Colchester Zoo is very accessible for those with wheelchairs apart from a very few areas, which do have large, steep gradient hills to get up and down.  However because there was a lot of volunteers we managed to overcome these.  I would like to think about getting an annual pass for the Zoo next year, when J2 is three.  Therefore I think that we are going to have to have a meeting with our wheelchair clinic about the possibility of getting some sort of motorised help for the chair. 

This will also help with another problem we are now facing.  Although  we are extremely lucky to live by the sea, you can only access the lower sea promenade by significant hills.  I am no longer able to get J1 up and down these on my own.  To be honest even if both my mum and I push we struggle.  This is very frustrating for all concerned, especially with the Summer Holidays imminent.

I am very much hoping that we do not have obstacles put in our way when we make this request.  J1 has recently been weighed and measured (height) and he is on a par with an 11 year old.  J1 is actually eight.  Not being a particularly big person myself, it is hard to accept that I am unable to even take my son for a walk and ice cream along the sea wall by which we live.

As I mentioned, it is the end of the school year for J1.  It has been a very different year for him as he went into a new class.  We were worried about how he would cope.  However, after only a short few weeks he had settled in well.  The class has been good for J1 in a lot of ways.  It has really helped his character to build.  He is developing his own sense of humour and is no longer so timid of other mobile children his age.  Up to this point he would meltdown if another child his age even said 'Hello'.

J1 does require a vast quantity of physiotherapy everyday however and there has been a few issues regarding this throughout the year.  I think it is always something that I am going to have to keep a very close on eye and reiterate constantly to all those involved with his care.  J1 can not move his own limbs with any real control.  Thus we have to ensure that we do this for him.  Can you imagine being set in one position for any length of time.  Think about how many times you shift position on the sofa, or in the car or in bed.  Remember that discomfort you feel if you wake up after a long sleep and go to stretch your leg?  That is a constant threat for J1, moreso because of the metal plates he has in his hips.

Another challenge we are now starting for face as J1 is getting older is his awareness.  This is not a bad thing by any means, it means his comprehension abilities are developing which is fantastic.  But, the negative side to this is he is also becoming aware of all the things he can not do.  He no longer wants to walk to the park with his brother.  He doesn't want to go out in the garden when the other children play on the trampoline.  He doesn't want to sit and have a drink with mummy in the local indoor play area while all the other children run around screaming and having fun.  He doesn't want to sit and have an ice cream while everyone else goes on the rides at the pier.  Who can blame him?

Luckily we have found a brilliant centre, quite local, that has some sensory rooms that he can enjoy.  This is great for rainy days (and there are plenty of those at the moment).  But other little activities that up to last year we could just about do (a few rides on the pier, getting him in the small gap on the trampoline) are no longer a viable option.

Therefore, it's time to spend this week thinking outside of the box and doing some research for fun things we can do over the six weeks break.  We have got a 'wheelchair bike' demo in August, with the hope that we will be able to obtain one soon.  J1 keeps asking to go for a bike ride, and absolutely adored it when we hired one on our recent trip.  Hearing him giggle uncontrollably, like other children do in the park or on the rides or on the trampoline - priceless.

I am also looking into the possibility of getting a wheelchair swing for the garden.  He thoroughly enjoys the one at school and would love to be able to take him in the garden to join in, every single day that we possibly can.  He deserves that.

In summary a lot of development is happening in our Special Needs part of life.  We have lots of calls to make, research to do and options to look at as everyday our wonderful little boy 'Grows Up'.

Join in Special Saturday by linking up on Facebook, Tweeting using the #Special Saturday, writing posts / note / odes.  Anything you want to do to help raise awareness of living with Special Needs and how amazing, challenging and rewarding it is.

Special Saturday : Special Needs in my Life

Special Saturday is a great hashtag. It encourages everyone with whom Special Needs features in their lives, to write about it, status check it, tweet about it and link up in order to try and raise awareness of living with Special Needs. As you know I am always interested in any ways and means of raising awareness for this very reason (hence why I started The Disability Diaries) so I will be joining in this fantastic movement.


This week the wonderful Special Saturday prompt was to start your thoughts with

'Sharing my life with a person with Special Needs has...'

These are my thoughts:

Sharing my life with a person with Special Needs has rocked my world.  In a multitude of ways.

Firstly it rocked my world by oblitarating life as I knew it.  Kind of in the way that Superman hurls his enemies into space to float around in a timeless, impossible void.   I couldn't grasp the concept that my baby had suffered brain damage.  But there it was.  Quite literally in black and white on the scan.  A mark the size and shape of a thumb print on the left hand side of the brain.

Then my world was rocked back to shape by seeing the amazing miracles and achievements that my little boy was making everyday.  Will he walk?  No.  Will he sit?  No.  But he can tuck away a three course meal with pleasure and enjoyment and that is sadly something so many of the other wonderful Special Needs children we know can not do.  I learnt to be thankful for all the things he could do rather than resent all the things he couldn't.

Sometimes my world gets rocked and crushes me down.  Like today.  Whilst having a stretch out on his bed, from which he can see into the garden he said to me 'I can hear my brother, what is he doing?'  To which I replied 'He is on the trampoline.'.  He sighed and said 'I can hear him laughing.  He is having fun and giggling.  I can't do that.'  C.R.U.S.H.E.D.

Then there are days when my world rocks me into action.  I get up and think today I am going to get somewhere with XYZ equipment issue / person to chase / quote to get / charity to approach / school meeting.  I call and pester.  I email and leave messages.  I write letters and research things, until I feel I have made some small step forward. No matter how small it is.

There are also the days to recount when I have met some of the most wonderful people ever.  People who I really do not think I would have met had it not been for my son with Special Needs being in our life.  They are warm, loving, enthusiatic, friendly, open minded, strong and inspiring.  They are the teachers, teaching assistants, volunteers, helpers, carers, who help to look after my son when I am not there.  They are a special breed of human.  A wonderful one.  Their kindness rocks my world.

Sharing my life with someone with Special Needs has, I think made me a better person.  I used to be scared of and ignorant to disability.  I had never had any experiences with anyone who had disabilities or serious illness.  Now I understand that you smile and say hello and chat to that person in a wheelchair, or using crutches and the person standing by their side supporting them.  You chat to them as you would absolutely anyone else.  You don't look past them and make them invisible.  You ask about their disability and take an interest in that person. 

My sons Special Needs are great and varied.  They have caused issues to arise that I never would have dreamt would be something we would deal with under the umbrella of Cerebral Palsy.  But on the other side of the coin, his Special Needs have made our family closer, united, stronger.  Typically I would say we are a family who would usually take a backseat.  Just go with the flow.  Take what is said as what is right. 

You can not take that type of stand for your child with Special Needs.  You have to be strong.  You have to question.  You have to argue for what you think is right for your child and not just take the word of a professional, because chances are they will have only spent mere minutes (sometimes seconds) reviewing your child.  You know every inch of them.  You have to get your child the voice they can not yell with.

Sometimes I think I do a wonderful job, as a Special Needs mum.  Sometimes I think I do not fight hard enough for him.  We do not have every piece of equipment he probably needs.  We do not have some of the luxury items he could have to help enhance his life.  Sometimes it is hard, to get through everyday and on top of that find all the energy needed to do that extra fighting.  Other days it isn't hard.  Other days it is wonderful and I realise that sharing my life with a person with Special Needs has opened my eyes.

The Disability Diaries (The Life of J1) : Dark Days - The Big Day : Marathon 2006

Final part in a series of 'Dark Days' posts for Disability Diaries Feature. 

View parts one, two, three.

Beating depression is a highly personal thing.  Unless your mind, your brain, your thoughts want to banish it there is nothing anyone else can do, or say to make any difference.  If you are lucky enough to dispatch it out into the great unknown, that does not mean that it is going to stay floating out in space leaving you in peace for the rest of your days. 

For me, having suffered with depression for a short period in my life - in reaction to discovering my baby boy had suffered brain damage, with the consequence being he is afflicted with the condition Cerebral Palsy - I feel relatively safe that I can keep depression at bay.  I think it would take something pretty huge and grandscale, like what happened to J1 to take me back to that stage.

But I am mindful.  I was obviously susceptible to a degree, otherwise I would have made it through that period without anti-depressants.  To that end I respect, more than ever, the power of the mind and the need to keep it healthy, as much as the need to stay physically fit in order to be able to care for J1.

I was helped out of my personal 'black hole' with the help of science, but also with the suggestion of some good old fashioned 'Health and Fitness'.  From this suggestion I fell in love with running for the first time and decided that I needed to face a challenge.  A real challenge that could try and give me some tiny, small insight into what sort of strength J1 would need to have on a day to day basis.

I applied for a Gold Bond place with a charity to run the London Marathon 2006 and was successful.  After months of training, that in my opinion now should have been much more dedicated, we found ourselves at that wonderful weekend in April.  The roads of London were closed off.  The Mall was adorned with Union Jack flags.  Hotels were booked up with crazy Marathon wannabes.

We decided to make a family weekend of it.  My parents booked us a family room at a hotel for three nights and on the Friday morning, packed like loaded donkeys we took J1 on his first train journey to London.  It was exciting from the start.  We had a packed weekend, starting with going to the Expo to register at the Excel centre. 

It was wonderful.  A world of running and adrenaline surrounded me as I went from one stall to another, ate pasta and picked up all of my equipment needed for The Big Day.  A chip for my shoe.  A running number.  A bag for all of my personal belongings with '2006 London Marathon' emblazoned on it. 

On Saturday we were invited to a Pasta Party with the charity.  It was a fantastic boost as I got to meet other runners and hear their own personal stories of what had brought them to this point.  J1 got an amazing reception and many attendees said meeting him reminded them even more it had been worth all the effort of training.  It was a beautiful afternoon so we took J1 for his first ever visit to Hyde Park and enjoyed the City of London.

Out of everything, the thing I was most worried about was making my way to the starting point for the Marathon.  I have zero sense of direction.  I needn't have worried.  As I left the hotel I found myself constantly surrounded by other running attired people and at that time of the morning on a Sunday very few others.  The tubes were opened freely for travel by runners as part of the Marathon and there was a wonderful, excited buzz on the journey. 

Once off of the tube there was a fair walk to the start.  It was a unique sight seeing all the different running vests bobbing along.  By some miracle, both colleagues who I knew were also running I bumped into on the walk and it was nice to see a familiar face.  It helped take some of the pre-start anxiety away. 

I decided to be sensible and use the bathrooms before I joined the masses to get through the start gate.  That is quite a feat in itself.  There are plenty of toilets, but the queues for them are massive.  When I see the overhead shot on the TV now it always makes me smile.  Again, everyone just found it an opportunity to chat to others.  By the time I got through that queue the bulk of people had made their way through the start, so I didn't have to wait long before the big starting arch was in my vision.

With a lurge in my stomach, I checked I had everything where I needed it.  Felt that the chip on my trainer was secure for the millionth time.  Started, stopped and cleared my own stop watch and gamely set off on my Marathon Quest 2006.

It was still super busy at the start so I couldn't get running until about a mile in, and the excitement of it all; the crowds rows and rows deep full of cheer and support; the television cameras; the bunting and advertising meant I was at Cutty Sark before I realised it.  The next marker was Tower Bridge.  Half way.  They register your time here on your chip so all I could hear was 'beep, beep, beep, beep' of the runners times being captured, a memory stored forever.  My next marker was the Charity Cheering point at mile 18.  I was starting to feel it by the time I reached this point and was glad to see my family and J1, wearing his 'Run Mummy Run' T.Shirt. 

I took the opportunity to change my shirt and pick up extra sweets here.  It had rained non stop from the start and I was saturated and chilly.  I don't know if the stop was the trigger to hitting my wall, but at mile 19 I walloped into it with force.  The next four miles were bleak.  It is a pretty dull part of the race with scarce crowd support (it might have been due to the torrential rain which had by now set in of course). I was back to be absolutely soaked to the skin. I was sick of my sweets and Kendal Mint cake.  I had had enough and wanted to give up.  In the darkness of one of the tunnels I stopped.  I wanted to sit down and never run another step again.  I wanted to get a lift to the end. 

It was here I realised the importance of having a strong mind when doing a distance like the Marathon.  I had ignored this element of it and now I was suffering.  I had to go back to my key thoughts of 'I have the ability to do this run or walk, my child does not.' 

I plopped a tear as I realised that I had no clue where I was.  No phone signal to get some moral support and the only thing I could do was carry on.  After this low the rain eased up a little.  Then I saw it, the magical sign for 23 miles.  My final marker before the end.  I had trained my mind to repeat the following mantra on long runs - 'Only three short miles to go.'  As I crept out onto Embankment the support from the crowd lifted again to the heights it had been at the start.  I decided to start jogging again.

Three miles, at 23 miles is not short.  But as the two mile marker came into view I couldn't help feeling a buzz.  I was looking forward to running up the Mall to the Marathon music and to meeting my family at the end.  Just as I was coming into the Mall I heard my name being screamed.  As I looked I saw my family had managed to get to the front. They had lifted J1 out of the warmth and dry of his buggy and was waving his arms around.  He was in hysterics  and loving it and this pushed me to sprint the final 'point two' miles. 

Going over the finish line was immense.  I donned my medal and spotted a photographer and thought 'I have to have this picture'.  Lovely volunteers were wrapping me in foil and giving me drinks and asking how I felt at completing the Marathon?  I didn't know.  I felt exhausted and elated but it hadn't sunk in that I had actually completed that challenge I set myself the October before. 

It didn't sink in for a while either.  Everyone else who had supported me were more excited than I was.  It felt great to get my photos from the race arrive, and to see my name in the list of finishers in the newspaper.  My work did a follow up article about how I did.  Nowadays it is something I look back and think wow, what an amazing experience - how did I do that?

After the Marathon I came off of the anti-depressants.  I went back to my proper work hours and our life had truly started to have routine, that included all the world of disability and we were coping.  As I say, the sadness of it doesn't go away completely.  But I had made my way through the grieving process and had finally got to acceptance.  That had taken longer than 26.2miles and had been far tougher than the Marathon.

 

The Disability Diaries (The Life of J1) : Dark Days - Getting Lighter!

Part three in a series of 'Dark Days' posts in the 'Disability Diaries' Feature.

For part one click here.  For part two click here.

At the end of the last instalment of Dark Days, I had got to a point where I was starting to cope with day to day life.  I still had bad days, plenty of them.  But with the help of the anti-depressants, getting back to work and a change to a more healthier lifestyle I found I was beginning to accept and acknowledge that life for J1 and I was going to be very different from what I had thought it would be.

During my move to a 'healthier lifestyle' I had set my sights on undertaking a Charity 'Challenge'.  I was investigating the possibility of signing up to trek the Inca Trail in Peru, with the aim of raising about £1800.  A good friend also wanted to do it and the first step, before parting with registration money, would be starting to get fit.

Due to financial constraints I decided to get fit I had to start running.  This was the source of many wry smiles from friends and family, for the main reason that I had always been rather vocal about being anti-running.  I did what I always do when starting something new; purchased some reading literature on it. I bought my first of many Running Magazines and I enjoyed reading it.  I gave me a lot of inspiration.

The most useful article I read was Top Things To Remember with Running.  The key point that stuck with me, and still does when I run today : The first ten minutes are the hardest.  I really clung onto this little pointer on those first few tentative runs.  I stuck to a 'complete beginners' guide, which encouraged building up slowly.  I would run for two minutes and walk for one.  Soon I found I was comfortable enough to run for four minutes and then six and then eight etc.

It was after a Saturday morning jog that I came home to find my mail on the door mat.  On a high from the exercise, I opened a large envelope from the charity I was hoping to do the trek for.  It was a large advertisement for one of their other 'challenges' and it made me smile immediately : The London Marathon 2006.  I knew instantly this was the 'challenge' for me.  I completed the registration form, found my chequebook and walked the application to the post box.

I didn't tell anyone but the friend that had shown an interest in doing the Peru trip.  He was happy that I had found something that had inspired me, and insisted that he still wanted to register for the Inca Trail.  I found some literature on Marathon training programmes and started to train against that.  I would not hear for sure if I had been allocated a place for the Marathon with the Charity until at least October so in the mean time I continued to build on my running and started to brainstorm fundraising ideas so that I was prepared.

I got the good news that I was going to be a London Marathon participant and euphoric told everyone.  I think my parents were happier that I would be staying in the UK than disappearing to Peru.  I had found my mum slowly starting to drop tid-bits of information in like 'Rather large spiders in Peru'.  Although I wouldn't be going abroad I still had to rely heavily on my parents for support for all the training hours I was going to need to put in and for the fundraising target I needed to hit. 

As with everything new all training and motivation started with gusto, but as the dark, cold nights started to draw in, going out for runs became less appealing.  I was also going out more socially, as I was feeling much stronger.  Although this was good in one way, it meant that I was drinking more, which was not conducive to focused Marathon training.  Long runs were missed due to hangovers. Evening runs were abandoned in favour of spending the extra time getting ready to go out.  Or I felt I couldn't ask my parents to have J1 as they had already looked after him so I could go out. 

Then two things happened that made me realise the importance and scale of what I was doing.  I had registered for my first run in the January.  It was a 10 mile race.  I wanted to get used to the etiquette of racing and thought it would be a good starting distance.  The race came around much quicker than I expected and suddenly I was faced with the fear that I was going to be participating in a race that I was just not ready for.  That filled me with dread.  What if I just couldn't finish and then was lost?  What if I came last?  Not only last, but so long behind everyone else that the organisers had packed up and gone home? 

At the same time the University where I was working ran a feature on a both myself and another member of staff running the Marathon in the monthly magazine.  It was a lovely piece and displayed a beautiful photograph of J1.  When this was published I noticed the donations on my 'Just Giving' page went up dramatically and small and large sums of money were being pledged by University staff, most of them I had never met, all with kind and supportive messages.  It came screaming home that what I had signed up to do was real.  It wasn't something I could just decide not to do.  I had committed to it and I needed to pull my finger out and get serious. 

Along with the Just Giving page I also did a few different fundraisers; the main one being 'Party in the Pub' - a childrens party for adults.  This entailed a 'crisp and sweet only' buffet (big hit); giant games (also a big hit) and bouncy castle (biggest hit!).  We held a raffle and did various other 'pay and play' games and this raised a huge chunk of my target.  The support was overwhelming, everyone believed that I could do this and it was time I started to think that way as well.

I am glad to say that I did complete the 10 mile race.  I also found that I loved the whole atmosphere of the event.  Other runners were so friendly, and immediately interested in J1's story and the reason I was undertaking the Marathon.  And it was the first time I really felt like 'A Runner' - and that was a label I liked.

After that I made a lot of effort to enter races, in a variety of distances as these were great motivation for me to get out training.  Looking back now with the benefit of hindsight, I was out training and getting races under my belt but I only within my comfort zone.  I only entered one half marathon and this really wasn't adequate.  My longest run was about 16 miles, not really long enough or frequently enough and in the end I just ran out of time. 

Whilst life almost became all about the Marathon for six months we were also making a lot of progress with J1 too.  We now had the official diagnosis and this made getting the help he needed easier.  I still do not know how those parents that care for children who remain undiagnosed cope. Along with appointments about equipment (always was and I fear always will be the toughest nut to crack), physiotherapy and speech and language therapy we also got access to a weekly hydro-pool session.  This session meant we met other parents of children with disabilities and special needs - a huge support. 

Soon April had arrived.  I was feeling mentally and physically much better than I had for a year.  I was proud that I had reached race weekend without injury and was looking forward to taking J1 to London for the first time.  I was elated that I had not only reached but exceeded my fundraising target.  I was ready to face my physical challenge of a lifetime, but never forgetting the lifetime of challenge that J1 was facing.

The Disability Diaries (The Life of J1) : Dark Days - The Beginning of a Journey

Part two in a series of 'Dark Days' posts in the 'Disability Diaries' Feature.

I have had friends, who have been struggling with how they feel, ask me how the anti-depressants actually helped me.  The only way I can describe how they helped me on the road to recovery is to explain; I was able to deal with more.  Rather than the smallest thing seeming like a big deal, or a mountain to climb, they became just what they were again; a small thing. 

This in turn allowed my mind to start dealing with the other issues that it had to process.  Over the course of 15 months the days spent crying became less frequent, and the old 'fighting' spirit started to return, slowly.  It was not an overnight cure, the lack of sleep did not assist matters.  However, days where we had negative news on J1's diagnosis - which could have knocked me out K-O style - instead meant I cried, had a bad day and was able to move on.

In short, I started to learn to cope.

My doctor had not just prescribed anti-depressants to try and combat my dark days, he also suggested that I needed a healthier diet and some form of exercise as a 'natural' remedy to help lift me up.  The diet change was relatively simple.  Pre-baby I had always maintained a reasonable diet (my weight does not automatically stay down).  Also at one point I had spent a long period being an avid gym attendee.

Although I had good intentions with the exercise I struggled to find the motivation to do something.  The only real 'exercise' I enjoyed was going to the gym and at the time I was not in a financial position to join one.  Work had allowed me to reduce my hours, but of course with that came a salary reduction.  As I worked within the Students' Union at the University I was surrounded by a lot of sport-friendly/financially restrained people.  One person suggested that I might like to take up running.  It was free, would give me a good dose of happy hormones and some fresh air.  They even offered to work out a training plan for me if I so desired!  I nearly fell off of my chair laughing.  After thanking them for the offer, I explained that I faked a sick note for every 'cross country' session at school and had never even run on the treadmill at the gym.  Running was not a sport for me.

Although I was starting to feel better I still did not feel strong enough to take up offers of social occasions with friends.  I wasn't ready to run the risk of being required to openly discuss J1's condition, or even worse have to deal with their sympathy.  Additionally I found, after an 'attempt' at trying to tell certain people, they got very upset.  I felt they were expecting me to be strong enough to help them deal with their grief.  I didn't have that sort of strength so went back to my withdrawn method.  At work, people were appropriately avoiding asking anything too personal.  They stuck to 'How's J1 doing, ok?' allowing me to answer with a simple 'Yes, thank you for asking' - which was about as much as I could cope with.  I was thankful for the polite and reserved trait of the English.  

It was on another Saturday evening at home, researching a charity website, that I came across the 'How You Can Help?' section.  The site listed different 'Adventures' that you could sign up to, such as; Walking the Great Wall of China; Trek Kilimanjaro; Cycle to Paris.  One caught my eye in particular 'Trek the Inca Trail - Peru'.  It looked just, stunning.

I printed off the details and slept on the idea.  When I got up on Sunday the thought of doing something to raise money for charity, charities that were giving us help and support, invigorated me.  I felt a bounce in my step that I had wondered would ever return.  I had never been very adventurous in choosing holiday destinations, and to be honest it did scare me somewhat.  I decided to call a friend who was very well travelled to glean their opinion on the choice of adventure.

I felt nervous approaching someone about something that I wanted to do.  I was used to just doing exactly what I chose to.  However, I quickly realised that if I was going to do something, as big as what I was setting my sights on, then I was going to need support.  I made the call, and my excitement must have been infectious because two hours later I received a message saying - 'Not only do I think it will be good for you, I am going to do it with you!'.

I was even more worried about suggesting the idea to my parents.  I was concerned that they would think it was a step too far, considering I had only just started to cope with day to day life.  I was not going to be able to do this without their full consent however.  I was going to need lots of babysitting agreement so that I could get fit; go away for practise treks; organise the fund-raising side of things and of course go on the trek itself.

I did approach them however.  Although I could see uncertainty with a touch of 'We will say yes but I can't see her going through with it' in their eyes, to say 'yes' I think they must have see a twinkle in mine that had been missing for sometime.  My mum suggested before I parted with any money registering, I should take a month or two working on getting fit to see if I could - in reality - fit all the training in that would be required.

I agreed.  I had read that I would cope better with the altitude issues that would present themselves, if I had a good lung capacity.  At the time I could have taken a decent wager that it was currently pretty poor.  I looked up what would be the best way to improve it and unsurprisingly the suggestion was; Running.  It was time to go back cap in hand to the very kind person that had offered to help me with this very subject.

Little did I know that running was about to become a very real and very important part of my life.  How taking on more would in fact help me cope better and how much it would improve my state of mind.