Tag Archives: duchenne

Being Present 

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Being Present 

 

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toasting marshmallows with mates

The anniversary of a Duchenne Diagnosis day is often described as the day people felt they started to grieve for a child they lost and with that to say goodbye to dreams they had for their child and the life they thought they would have.

I’ve been there and said things like ‘He’s never going to play international rugby now, he won’t have a girlfriend, a job, get married, he’s not going to do this or will never do that’ Chances are he was never going to play rugby internationally anyway!

But he can still have a job, a relationship, get married and maybe even become a dad.

Last week we celebrated my nephews birthday he’s 2 weeks older than Zak. My earliest memories of my nephew involve cuddling him on my huge, ready to pop, belly and introducing him to his unborn cousin and thinking of all the adventures they would get up to and how close they would be growing up.

This year was one of the hardest birthdays as it was obvious looking at my nephew who all of a sudden has grown, literally, head and shoulders above me and grown into the life of a teenager going out doing his thing, planning for GCSEs and as I silently watched I thought to myself ‘that should be Zak.’

Little did I know 15 years ago how different their lives would be.

Birthdays are often the hardest in the Duchenne community, birthdays, Christmas and diagnosis days. Why is that? Well simply put it is because we don’t know how many more of them we have left.

As our kids get older the deterioration becomes more obvious. Zak will be 15 on Monday he is more than half way through the average life expectancy. There are many things now that the condition has taken from him, things he can no longer do.

However the other day I had a moment, some may call it an epiphany. This led to me making a commitment to myself that this year I am only going to celebrate – celebrate that on 21 August 5:10pm after the most horrendously long and difficult labour my firstborn came into the world and for every day I have him I will celebrate this day.

I know that one day the 21 August is going to be a really, really tough day so why should I make it tough prematurely?

I started then to unpick this theory of throwing away dreams, of comparing lifestyles – of saying things like ‘that should of been Zak’

Zak is Zak, end of. OK so he isn’t planning his GCSEs but he is planning a future , he has not grown head and shoulders above me physically but my goodness he has in his courage, determination and personality.

He asked me the other day if I was still sad because he couldn’t walk anymore , my reply was simply ‘no not really Zak I think I’ve got used to it’ I asked him how he felt and he replied ‘I’m still sad but I will be ok in a few weeks’  he said it so matter of fact.

He makes friends easily and he may not always access that in the same way as others his age but he is popular, he is friendly, and he is kind and isn’t that what we dream of for our kids?

As I started writing this he was down the club house probably talking the hind end off a donkey! He actually didn’t get back in until 2:30am!

I’ve watched him mature over the last year – OK so maybe a little more closely than my sister has with her son but maybe that, for me, is a privilege and not something to bemoan.

I dreamt of having good relationships with all my kids and I have that with Zak we have a great bond and he makes me laugh every day.

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Amazing big brother

He’s an amazing big brother he teaches them naughty words, gives backers on his wheels and will still play minecraft and lego heroes with Sian even though he has moved on to games above her age.

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A rare moment of laughter in the midst of dementia.

He has courage way beyond his years and a sensitivity to situations and people that most kids his age and even some adults probably don’t have. Just the other day I had the privilege of watching him visit his Great Grandma in the home, the smile and cheer he gave not only to her but to the other residents. He really does have the gift of the gab and the ability to make people laugh.

On the flip side he has the most amazing teenage outbursts. His version of stomping up the stairs is slamming his fist on the lift door opener and going up shouting things or muttering to himself! The other week he decided he was so annoyed about something he actually stropped out of the house and went around the block to calm down!

 

Zak’s journey in life has gone down a very different path to the one I imagined when he was safe inside me and the one I imagined before diagnosis day, but this is the journey he was destined for. If I travel that journey with him clothed in grief and sadness I am going to miss out on the beauty that the journey can give me and one day, when the journey ends, I will look back, and regret not being in the moment and not being truly present to make that journey with him.

As I tidy this blog post up and make the final edits I can hear Zak chuckling away to himself, messing around with Itunes and singing away. He is so up for his birthday tomorrow and so excited that it is contagious!

So Happy 15th Birthday Zak and here is to every other happy Birthday that I will be lucky enough to celebrate with you.

I can’t wait to see what the rest of your future holds and the challenges you beat. You’ve got this kid and I am right there with you.

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Mr independent

Disclaimer : it has taken me 13 years to reach this point. It has not been an overnight process and I am not saying it is easy and in no way playing down the difficult journey we make as parents. I may also have a huge wobble tomorrow morning when his birthday actually arrives! However I will hold fast to this commitment to fully celebrate.

We each have to find our own way in our own time. Xxshakespear

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Time and my race against it.

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Time and my race against it.

 

When I was younger I used to wish time away – I was always looking to the next thing. Life was always going to be better when …

When I had my first child as a young,  unwrinkled, 23 Year old I was still wishing time away. Wishing away those sleepless nights, the nappies, the feeding but still wanting to keep those baby cuddles , to always keep that gorgeous baby smell, that closeness in the middle of the night when it’s just you and baby. The way his little hand would curl around my finger. I’m sure we can all relate to those moments the moments where you want time to stand still but fast forward to the next exciting stage as well.

If I knew what I know now I would have made more of those moments, I would have relished in the pure innocence of the first 18 months of his life.

31 March 2004 my outlook changed and changed forever. Time was not going to be a friend of mine no more. Time was my enemy. We were going to have a love hate relationship.

I was going to spend the next years of life battling to stop time , in a race against time, trying to buy more time, looking back on time, trying to make the most of every moment in time, fitting in as much as we could in the time we had.

Why the battle with time?

My first born – my gorgeous content baby boy had Duchenne Muscular Dystrophy. In a cold clinical room I heard those words, progressive, severe, fatal.  The more time that passes the weaker his muscles would become. Time is not on his side.

The ironic thing though was those first years after diagnosis my boy developed, developed in his own way and within the limits of his muscles but he certainly wasn’t getting weaker and he was learning to do new things. For years Time lured me into a false sense of security – what a bitch!

Whilst celebrating each new milestone I was trying to stop time, pause time and buy us more time. I was so busy trying to do the impossible that when I look back I really don’t think I made the most of those years, that time, when he ‘was doing well’ when he was gaining skills and not losing them. I should have taken more video , more photos.

All of those once celebrated skills are now becoming mourned for skills.

The getting up stairs was the first to go , he then struggled to get up off the floor, off a chair , walking slowed, then came the first fracture – all DMD parents dread the words fracture, casFile_000t because we know that time in a cast can be detrimental and often kids will stop walking as a result. 4
weeks and 3 days in cast and he amazed us all by walking as soon as the cast was off. In fact that was a year ago today – time hop told me so!

 

A few months down the line  he suffered a second fracture, and he hasn’t walked since. I waited 3 years for him to walk and wished and wished for it and he did it, he walked for almost 11 years. I know I should count myself ‘lucky’ some DMD parents never see their child walk and some children don’t walk for as long.

This photo File_000 (1)bizarrely was taken the day before he fell, it is the last photo I have of my son standing by my side.

Time is relentless stripping away what he once could do.  His arms are weakening. I won’t get into what life is like now. He is nearly 15 and deserves his privacy but whilst his soon to be 3 year old sister is gaining independence at a rapid rate he is losing his. How crap is that!

Fast Forward

Fast forward 13 years – 13 years of knowing my son has an incurable condition , 13 years of knowing the likelihood is I will need to plan my sons funeral, 13 years of hoping that if I really tried hard enough we would beat this and do the impossible, 13 years of researching what was going on in the world of DMD research, of alternative therapies, thousands spent on supplements that ‘may’ help , hundreds of hospital appointments, blood draws, scans. Countless conversations explaining the condition, battles with local authority to get what is needed, 13 years of campaigning and being involved at the heart of Duchenne research charities, 13 years – time is not my friend. Time is not on my side and whilst every day is a gift everyday is a curse….

…and I’m tired, I’m tired of fighting with time. Time has taken its toll on me – I’m no longer the young unwrinkled 23 year old. I am wrinkled , grey haired (when I’ve left my colour appointment too long) and I’m weary. There I’ve said it! I’m weary.

A year ago as we approached the 12 year diagnosis anniversary I sat all day looking out of the window, not talking, not functioning, not even thinking. Late afternoon I went out down the beach for a walk – I walked along the shore line listening to the roar of the sea and I talked to myself , the jumbled thoughts swirled around like the sand by my feet. I began to slowly realise that I was in a race that I wasn’t winning in fact I was losing and the biggest fear was it was turning into a race I wasn’t actually going to finish.

The race

Picture the race – One by one the supporters that were cheering me along from the sidelines had got bored and gone to the next thing, or had run out of things to cheer so had gone silent. The ones running by the side of me had also got weary and some had dropped out of the race altogether as the person they were racing for had gone, that’s heartbreaking running side by side with someone and then they have to stop because the pain of loss is so great. You feel their pain, you know that one day that will be you and you try to find the words to comfort them but what do you say, what can you say that could possibly make sense and help?

What started as a race, a sprint to the finish line was turning into a marathon and I was tiring. I looked behind me and saw younger runners full of strength , full of hope running behind me running at a faster pace , running like I used to run. They had a load of people at their sidelines cheering them on , giving them support, handing out refreshments. I was in danger of becoming resentful of these runners, of the promise they had, the optimism.  (I have always said I will not turn into a bitter angry parent – and I haven’t by the way)

And it was then that I realised it was time to stop running and it was time to start living. It is time to make my peace with time.  There are others behind me that are faster , stronger and have more to run for. Maybe time will be kinder to them, maybe time will be a good friend to them, maybe they won’t see once celebrated abilities turn to inabilities , maybe just maybe they will cross that finish line in time.

This last year has been one of the most difficult years of my life, but I’ve made it through. I know I will adapt to every next stage, I have to what other choice is there, plus I have the most amazing young man, a son and a friend who shows me how to adapt.

This is now our journey, it is not a race. it is a journey that we will make together, not trying to cram every thing into every day , not driving ourselves mad trying to create amazing memories, but believing that as we go along this journey, at our pace, memories will be made, moments will be had and life will be lived for as ever long as we aFile_001re lucky to live it. There will be tears and there will be joy but life will be enjoyed. No more focusing on the have not and can not but the have and can do.

I stopped the other day whilst walking the dog and I sat for 15 minutes and just listened to the birds singing , I haven’t enjoyed something like that for years! It is the simple things that give us the strength and it was then I think I realised I had come out of this year intact, or maybe its the chemical altering pills 😉

Time is so very precious – every moment , every day, every month , every year and when that time ends I will look back and celebrate the times we had not mourn for the time we didn’t.

I don’t want to get to the end and regret lost time.

Advice from an old wrinkly runner….

So to all those younger runners who are just starting off on their race, please look after yourself , remember to take in your surroundings , breathe deeply and make the most of the flat bits of the race it will help you on the uphill. I may no longer be running in front of you but I will be checking on progress and will cheer on one day from my sideline. Who knows maybe there will be a last minute dash to the finish and I will be there celebrating too!File_000 (2)
To those who have run this race with me side by side over the last 13 years, who were there when it got really tough, who celebrated and cried with me, advised and encouraged me. To those who have always had my back, Thank you. I am so lucky to have a group of DMD parents that I can call friends and I’m grateful for each one of you.

To those few people still standing on the sidelines who are cheering us on thank you for your stick ability

Lastly and most importantly for those who have withdrawn from the race because of loss, to those who no longer have their sons with them please know I am always here.

I’m truly sorry the race was not won for them.  I am truly sorry we couldn’t cross that finish line in time.

 

Moving from Inspirational to Aspirational..I can!

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I can

An iconic photo of the Paralympics

Jessica Ennis and her coveted six pack

 Over the Summer I, like millions of others around the world, have been following the Olympics, fascinated by finely tuned athletes doing amazing feats that most of us can only dream about, From the comfort of my sofa, cup of tea and chocolate biscuit in hand, I watched Jessica Ennis stunning gold medal performances cheering her on with a passion I normally reserve for Welsh rugby. Admiring her female six-pack somewhere in my distant memories I recall having one similar to that, I then remember my gym membership card which has been shoved in the useful things draw for the last few weeks. Note to self must get it out.

As a family we watched Tom Daley’s bronze winning performance, laughing at how Tom Daley was having the biggest party in the pool whilst the Chinese athlete seemed devastated to have only come away with Silver. (His mum obviously didn’t tell him that winning isn’t everything, it’s the taken part that counts)
My 5 year old watched the gymnasts in awe and for the next few days she tried to do stretchy wonderful things with her body, attempted handstand, perfected her crab and took running jumps on to things she really shouldn’t! We were all inspired by what we saw.

Then came the Paralympics, the super humans. I must admit I do have mixed feelings with that term. However political correctness aside I was looking forward to these events.  I wanted my boy to watch some of these events (apart from the rugby, no it’s not a case of wrapping him up in cotton wool but what mother allows her son to play murder ball!)  

Anyway.. my son has recently been saying I can’t. I was hoping that watching the Paralympic athletes would show he can. I explained to him that some of the athletes had the same condition he has. (and like my mother used to tell me there is no such word as can’t)

The four of us sat down to watch the Paralympic opening ceremony. I was silently praying that Sir Paul McCartney was not making an appearance on this one. My son fell asleep at the Olympic opening ceremony so I expected much the same from him this time but as the athletes paraded into the stadium something shifted in my 10 year old’s eyes. Here were ‘people like him’ we had a running commentary on the type of wheelchair, the man with no hand, the one who had no leg, he asked question after question and he was fascinated! These athletes were being clapped and cheered and they weren’t running in, they had wheelchairs like him, a scooter like he has. I could see the change in his face and as the athletes waved to the camera he started to frantically wave back. Finally something he could relate to and something that could tell him ‘he can’.
He then got very concerned about the performers suspended in their wheelchairs from the ceiling, asking if they had their seatbelts on.

Over the next couple of weeks I made sure that he could watch some of these games and see that yes although these athletes have very real disabilities they can still accomplish great things. You can dream big despite having a disability and you can achieve and be successful.

As a mother I always try to instill these beliefs in both my children, I want them to grow up and be confident, have a sense of achievement, have unfailing hope. This is fairly easy with my 5 year old girl, she is flourishing, naturally clever, very pretty (I am biased) and has oodles of confidence. With my boy though it is slightly harder, born with a genetic condition, which is progressive and no cure (at the moment) how do you keep that hope alive? How do I keep encouraging him that he can, knowing that each new skill he learns he will lose again, that as things stand today at some point in the future he will lose the use of all his muscles? The truth be known there are some things he can not do. Surely even the best mother I think must struggle with this at some point. Of course he is gorgeous and he is gifted but when he looks at his peers, when he struggles with school work,b when he sees his sister tearing around like a loon and when he watches his sporting hero’s it pushes him deeper into I can’t…
However you put my boy into a social setting and by God he can! My son can talk for Team GB if there was a category for talking he would win gold medal hands down. (those of you who know him are now cheering him on from the sidelines, nodding your head and smiling to yourself as you recall his many questions, and again I apologise profusely for his inappropriate ones)
These Paralympics showed him something of I can, knowing that some of these young Paralympians had the same condition as him, gave hope and gave a tangible sense of I can and it wasn’t just to me and my son but actually to a whole community who are often told you can’t. Some of them had even come from Scotland to London showing him that he can travel and be independent. It encouraged us and spurred us on. During the opening ceremony a friend on twitter told me that Holland was alive and kicking and throughout the Olympics we started to embrace Holland a little more (If you don’t know what I am talking about read the link at the bottom of the page)

The Paralympics was not a celebration of disability it was about sport. Journalists were actually told that focusing on the athletes impairments would be considered unnecessary. Focusing on someones disability goes completely against the social model. Putting that to one side, the Paralympics brought disability to the forefront of the nation, it brought wheelchairs, it brought prosthetics into our sitting room and it ‘normalised’ it. For two weeks at least, people started to see past the disability and past the aids and they saw the athlete. They saw the I can.

Peoples opinions have started to change and long may that continue, hopefully my son’s teachers will have been inspired, his peers, his friends and they will start to see he can. Oh and let’s not forget about the other mums, those that look on with pity as you take your child into school (thankfully I don’t know many of them)

Lord Seb Coe summed it up at his closing speech

“In this country we will never see disability the same way and the Paralympians have lifted the cloud of limitation”

I have seen my children inspired by what they have seen, and I hope that inspiration moves on to aspiration. Inspiration often runs cold doesn’t it, I know that as my gym membership card is still in the useful things draw. Aspiration is an internal thing, it’s about mind and spirit it’s not just a warm feeling after watching someone do something amazing. Our Team GB Olympians and Paralympians have done both they have aspired to do great things and in turn they have inspired a generation, that was the logo of the games after all. This government needs to follow on from this and we as individuals need build on this. The word lasting legacy has been used a lot in the last few weeks, I hope it’s not just a term the ministers are playing with. For disabled young people in particular I pray there truly is a lasting legacy with,amongst other things, more sporting opportunities things need to change as even in 2012 our mainstream society is still not the most accessible.
Our young people disabled and non disabled need opportunities that make sense to them, they need to have the space and the opportunity to dream and to achieve and we need to give our children the chance to succeed, the courage to aspire to great things because after all it will be their turn to inspire the next generation.

Dont just be inspired by great things aspire to do great things..
My job as a mum is to ensure that both my kids can turn this inspiration into aspiration and so I have chased up my little girls gymnastic lessons and have looked into the boccia clubs for my boy.

The gym membership card is still in the useful things draw, well 2/3 aint bad 😉

PS the bit I mentioned about Holland, you can read the poem here its called Welcome to Holland http://www.journeyofhearts.org/kirstimd/holland.htm