Best Post of 2012

The last day ever...ever of this year...

2012, for us, has been a good one.  In the UK we have celebrated some momentus occcasions and overall I think we have felt proud to be British.

I am looking forward to 2013.  I want to enter it with gusto and keep that drive going throughout the year.  I hope that my summary post of 2013 will be as positive and packed as the one for 2012.

I have been pleased with how many posts I have written this year, given the limited time I have to sit and write.  But which has been my best one?  This was quite easy for me to choose.  It is the post that people often mention to me, and when I think of my blog, I immediately think of this particular post.

So, with drum roll and drama... MY BEST POST OF 2012 IS...

 

DREAMING OF RUNNING

 

Channel 4, the official broadcasters of the 2012 Paralympic 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.



Top Pick of Our 2012 Year

2012 has been a good year in many aspects for Britain in general this year, with huge events such as The Jubilee and the Olympics and Paralympics.  In yet another year of economic recession, it was nice to have a lighter period.  A spell of not looking at what was wrong with our tiny little island, but actually getting behind those representing us - in a good way.  To watch and be a part of days and nights that will go down in history all around the world.

 

An example of this is 04.08.2012.  This was the night when Jessica Ennis, Greg Rutherford and Mo Farah all brought home those longed for Gold Medals for themselves and their country.  As London shook with the screams of encouragement from the lucky thousands in the stadium that night, I would hazard a guess that every street shook from those screaming at the TVs in their house. 

 

Whenever I see highlights from that night I will know that I sat with my two children, one either side of me, holding a hand each chanting 'Go Mo!' followed by three claps until he crossed that finish line when we whooped and cheered. 

 

2012 was a good year for our family in general.  We enjoyed participating in some old fashioned patriotism, but for us, one event makes 2012 a hugely memorable year.  My pick, for our best bit of the year must go to that wonderful day in may, when a Judge in our English Court of Law, banged her hammer signifying The Hubby had officially adopted J1.

 

We started the adoption process in October 2011, at our initial meeting we were told that an adoption case is an unknown quantity when it comes time frame.  We had read that it could take months, even years, depending on the complexity of the case.  What we hoped would go in our favour would be that it was a very straight-forward situation.

 

Of course we understood that what we believed to be clear cut, may not be to the professionals involved, but after our second meeting with our wonderful case worker, we breathed a sigh of relief when she said she agreed with us.  We were thrilled when in January 2012 we were informed we could make our application to the court.

 

We steeled ourselves for a long wait for the court date, but after a few more meetings we were given a first hearing in May.  A few weeks before this we were informed that it would be the only hearing required.  Our first court appearance would be our formal hearing and our celebration hearing.

 

We had a lovely day.  The court was happy to be carrying out a rare positive hearing and we were even allowed to take some photographs with the judge.  J1 officially took our family surname and we concluded our day doing J1's favourite thing - having a meal.

 

Fast forward a few months on and we now have the official paperwork.  J1 has always had a Daddy in The Hubby, day to day life hasn't changed, but now it is official, legal and binding.  J1 is The Hubby's son.  Fact.

 

There couldn't be any other event that would top that.

The Disability Diaries (The Life of J1) : The Holiday of a Lifetime

I have indicated in previous posts that things have been getting tough with J1 in ways other than his physical disabilities.  I do not mean for J1, but for me.

 

J1 is developing a fantastic sense of real awareness which is wonderful in so many ways.  The downside to this is that he is also developing the understanding of frustration.  The understanding of things he can not do, that other children around him can.  Things he would like to do but physically is unable to achieve.

 

For me, this lead to trying to explain why he can not do things as easily as others may be able too.  To trying to remind him with gusto of all the things he can do.  To desperately try and think of things that we can do, altogether, so that he doesn't have to worry about not being able to join in with his brother or friends.

 

To J1, I have been a cheerleader of positivity and 'can do'.  In private I have cried, felt frustrated myself and very low.  It kick started that anger only induced by the feeling of extreme unfairness.  The feeling of looking for someone to take responsibility for what happened to J1, only to find that is as productive as trying to climb a mountain made of fine ash.

 

I went along to my doctor, having seen the signs of a slippery slope approaching, who referred me to a good counsellor.  From this some of the negativity has subsided.  This teamed with the sheer inspiration and opinion defying wonder that was the London 2012 Paralympic Games has propelled my energy back into being more proactive.

 

We thought about what we could do, as a family that would be amazing.  Something mammoth that would stay with the boys forever.  I knew what I wanted to do.  Have wanted to do for sometime.  Something that would be a big undertaking, requiring a lot of research, a lot of phone calls, a lot working with other people to make it happen.  A lot of saving.

 

We wanted Florida.  We wanted Disney, Universal, Seaworld, Water parks.  We wanted the holiday of a lifetime.  So we decided it is time to make it happen. 

 

After weeks of browsing hotels, for those with suitable rooms, amenities, environments we narrowed it down.  After numerous phone calls to the airlines 'special assistance' hotline regarding specialist flight seats, hold capacity (as J1's chair does not collapse), and what we could do with regard to changing J1's pad on the flight - we decided on a date to go.  After contacting many transport companies to find one with a wheelchair adapted vehicle that could also seat five additional passengers, plus luggage we decided on where we wanted our transfer too.

 

We built our dream holiday. 

 

We are making it happen.

 

We are going to take that leap of faith and hope that the people on the other end of the telephone are correct in what they are saying and that in reality we do not find ourselves facing a whole heap of challenges.  The biggest predicament so far has been the flight seat.  The childs flight seat would be ideal for J1, but already at 8 years old he is too big for it.  So we are having to rely on the different adult version.  I hope that the transport company have fully understood that J1 has to go in the car, in the wheelchair and the wheelchair must be fixed as a seat itself.  I hope that the hotel have reserved the 'accessible' room and do not just allocate it 'if it is available' when we arrive as we have read about in some cases before.  We can only hope that we were firm and clear enough in our phone calls.  We can only hope, because if we did anymore than that we would never have made the decision to actually do it. 

 

So, with sheer excitement welling in our belly, we are going to a place where J1 can get on the rides (well, most suitable ones of course - I don't think The Hulk will be sporting a wheelchair carriage but who cares we'll be in the marvel, magical land of Florida!).  We are going to a place where, for the boys, the characters they watch on TV will be real life.  We are going to a place where we know we will only need shorts and t.shirts and suncream.  

 

For three weeks we will take a step outside of the reality of life and build memories to stay with us all forever.  Roll on 2013 - watch out Orlando and Clearwater Beach we are on our way.

Hopes and Aims - Third Quarter Review

Wow.

September.  Already.

This means that we are three quarters of the way through the year.  Scary.

It also means it is time that I review and evaluate my 'Hopes and Aims for 2012' - as originated in January as part of the Groovy Mums initiative with the fabulous Kate on Thin Ice.

Deep breath - here goes with updates on the outstanding items since the last quarterly review :

 

Family

 

- Continue to encourage J1 to try new activities and adventures to help with his fine and gross motor skills and his speech

 

We are hoping that J1 will continue to develop his speech and sense of humour with his class at school during this new academic year.  He has already come home and told me a knock knock joke this week so I am hopeful!  We are also encouraging him to go to after school club again (although it didn't take much encouragement - thankfully he was raring to go) and to join in with the schools Boccia programme.  He loves Ten Pin Bowling so think he will really enjoy this.  If he takes to it a Boccia kit might be a good idea to notify Father Christmas with.

- Be more vigilant with J1's home physiotherapy, even though he complains

 

J1 seems to be having increased tension in his right leg which is a very bad sign, so this has been an absolute must.  We are also ensuring that we are getting clear and positive updates that he is receiving daily physiotherapy, in some form or another, at school.  We have also taken steps to be put into the Government 'Direct Payments' scheme (this isn't payment in finance.  It is 'hours' that you can acquire and use on things best for your child - ultimately it means you have much more control over the professional help you think your child needs as you 'spend' the hours in the right place.)  However, it is a long process of which we are only at the very beginning.

 

 

- Potty train J2

 

This has started and is going quite well.  We are using 'big boy' pants throughout the day and have been doing so for about a week.  Overall we are doing very well, including a whole 'dry' day at Nursery.  It has been handy that the weather has been warm enough to get washing out to dry on the line so any accidents have been easily sorted.  I am a very proud Mummy.

 

- Start weekly swim sessions with J2 again

 

This got postponed over the Summer Holidays due to the sheer volume of holiday makers using our local facilities.  This is one of the hazards of living in a seaside town.  However, now school has resumed and the term time schedule is back in place swimming will once again feature in our week.  The good thing is that J2 has been asking to go, so he must really enjoy it.

 

 

- Start saving for a big family holiday

 

I am pleased, excited and elated to report that not only did we start saving for our big family holiday - we have booked it!  It has taken much researching, phone calls and information seeking with regards to accommodating J1's needs, but we took the plunge and went for it.  Next year we will be meeting Mickey and Minne in Florida.  Much list making and planning to commence over the next few months.

- Child - proof new garden for the kids to use in spring

 

I am exceptionally pleased with the progress made on the garden in our new home over the summer.  I have written specific updates previously regarding this and am planning a new one (with photographs of course) soon - watch this space.

 

 

Personal

 

- Read at least 1 book a month

 

My aim was 12 books in 12 months and so far I am on track.  My current read is Jodi Picoult 'House Rules' which is very good.  I am thinking of doing a round up review at the end of the year on the 12 books I have read over the year.

 

 

- Try and run twice a week, establish some safe routes

This aim has manifested itself into a real hobby once again and I am still thoroughly enjoying it.  I am now back out running after a month of being forced to stop due to damaging my Patella Tendon.  I have got a 10K race on Sunday in a very pretty country village and was thrilled to smash my PB for 5K during my last Summer Series race in August.  I have also just had notification that entries are open for our local Half Marathon in March so will be signing up for that.  In the meantime the 'big race' I am preparing for is the BUPA Great South Run in October.

 

 

- Treat self to a spa afternoon once every 3 months

 

This has categorically not been happening.  However I have got a date for a fortnights time pencilled in with a friend so fingers crossed a couple of hours relaxing is on the horizon.

 

 

- Plan one weekend away a year, just Hubby and Me

 

This is happening, in conjunction with the BUPA Great South Run.  My parents have offered babysitting services so that The Hubby and I can travel to Portsmouth on Saturday morning and return on Monday.  Let's hope this fine weather continues until then.

 

 

- Try and be more positive on believing in what I can achieve

 

The Olympics and Paralympics legacies have brought this to light and made me think about it alot of late.  The running certainly helps with this too.  When I think to how I started, to how I have progressed lots more seems possible.  I believe this is also showing in the fact that I have started to not only write but publish some fictional writing.  I keep remembering that time ticks away and you never get that back so make the most of it, with whatever set of circumstances you have facing you.

 

In general I am just trying to be more proactive.  I have taken steps with regard to several things for J1, for example arranging demonstrations and getting quotes in for a specialist bike (demo was brilliant) and mobile hoist (a necessity).  I have to acknowledge that he is going to need more specialist items as he grows, as hard as that (still) is to accept.  He needs them and I am the one that has to ensure he has everything possible to make his life as easy, full and social as it can be.

We. Were. There.

I remember where I was when I got a text saying that we had won the bid to host the 2012 Summer Olympics (for the record Burger King...).    Cool, I thought.  I did not give it much more consideration than that with it being years away.

However, having been lucky enough to go to the Commonwealth Games in 2002 when they were held in Manchester, I did want to try and purchase tickets when they went on sale.  I have the most fantastic memories of our experience at the Commonwealths.  The atmosphere; the stadium; the communal areas set up with big screens; the friendliness of visitors, staff and volunteers.  Alas, like the majority of the rest of Britain, it seemed, I was not successful in a ticket bid.

As the momentum for the Olympics started to build, I watched more programmes and read more literature on this mammoth event.  The desire to attend grew.  I wanted to be part of 2012.  Then the adverts on Channel 4 started to catch my eye for the Paralympics.  Of course my interest in this was heightened more than ever being a mum to a severely disabled little boy.

I was glued to the TV for the Olympics period, but I wanted to actually be there for the Paralympics.  I was moved and inspired by the adverts alone and knew to attend the live event would be out of this world.  At the same time the whole country had been romanced by the Olympics and had started to open their eyes to the fact that it wasn't all about to come to an end.  A new wave of amazing Athletes were starting their bid to make history.

We managed to secure tickets for Wednesday 5 September 2012.  Our session was for the evening Athletics in the Stadium.  However our tickets allowed us entry into the park all day.  I wanted to make the most of it so set out an action plan for my husband and I.  It was exciting for two reasons; the first it was the Paralympics of course.  The second; it was a rare day out on our own. 

We set off with the weather beautiful and a spring in our step.  First stop was Tower Hill to get a photograph with the Bridge in the background.  We had done this when we spent a day in the London atmosphere whilst the Olympics were going on and the Olympic Rings were hanging off of it - naturally I needed a matching photo!

 

 



Next was a visit to Westfield Shopping Centre en-route to the Park entrance.  I have to say it was very enjoyable with a stop for (very reasonably priced) Nail Art

 

 





And to the top floor for lunch...

Then we strolled across the walkway, with hundreds of other excited attendees and through the 'airport style' security system.  As had been reported throughout the events all the staff and volunteers, police and armed forces were jovial and friendly.

 

 



We were then 'in' and it was a wonderful atmosphere.  We saw all the sites that have now become famous world over...

 

 

We also found this which I would love for my back garden if it is going spare...

 

 

 

There was so much to see and do in the Park the time flew by.  Before we knew it the announcements were being made that the gates for Stadium ticket holders were open.  We made our way over early which gave us good opportunity to get lots of cool photos of inside the Athletics Arena.

 

 

Our first race was a real treat, both Oscar Pistorious and Jonnie Peacock featured.  This was followed by lots of amazing finals and medal ceremonies, which all brought a tear to the eye.  The Ladies 100m for Visually Impaired athletes was a Brazilian one, two, three and their delight brought a cheer as big as if it was a British trio on the Podium.

 

We also experienced something very unusual.  The Mens 4 x 100m Relay for Visually Impaired athletes requires that the crowd is completely silent until the baton is handed over to the fourth participant.  They are relying on hearing the correct sound signals to make their race work.  Asking a crowd of 80,000 to contain their excitement for a relay race is a big task.  And it was the most surreal thing to do.  It just felt wrong, even though it was right!  The cheer after the last baton handover blew the roof off of the Stadium and made the wait worth it.

 

It was truly amazing to be part of London 2012.  The Paralympics in particular lived up to the expectation it teased with beforehand.  We really did see 'Superhumans' in action.  We really did see determination, focus and courage.  We really did see human kindness, peace and harmony.  Even if you are not a fan of sport, if you are a fan of any of those things you would have enjoyed this summer.

 

For us, as parents of a little boy with severe physical disabilities we saw the unexpected and the amazing.  We saw nothing short of miraculous achievements.  We saw disability slipping away and being replaced with sheer ability.  We saw HOPE.

 

Thank you London 2012