Author Archives: vicilou

Is a poo in privacy too much to ask? (that is the posh title)

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Is a poo in privacy too much to ask? (that is the posh title)

‘Personalisation will mean looking at health services in an entirely different way. Staff will need to understand and embrace the idea of personalisation and shift from an attitude of ‘doing to’ the service user towards one more about ‘doing with’’ SCIE

Friday .. my long awaited day off. That’s irony right there!

Packed all 3 kids off to school had a coffee and then set off on a 37 minute journey (according to Google) up the coast to visit a potential shortbreak provision for Z.

I say potential, it is the only one open to him within the county. We don’t have choice and control in this backwater of a county. Let’s ignore the fact that there are 3 other provisions a 25 minute drive away but they are across council divides and so we can not possibly send him out of county and how dare I even suggest that!  We also ‘don’t do personal budgets’ in this county either so God forbid I ask for the equivalent funding to go and purchase from a neighbouring council.images

No exaggeration I have actually been told on numerous occasions that Northumberland does not do Personal Budgets for children.

Anyway you can see the kind of mindset I was in having to drive further up North to look at a provision which I was already 99.9% sure would not be suitable for Z’s needs but social care have determined it can meet his needs so obviously I am wrong. I am only his mum what do I know….

I kept telling myself as I drove up in the pouring rain, be open minded do not live up to your difficult parent label. Smile sweetly, go through the motions then you have ticked the box and can move on to the next stage in the fight (yes fight) to get what Z needs.images (1)

You see if I don’t go up and look how do I know it is not suitable and how can I argue that? Well I already know it is not by looking at photos of the provision and reading eligibility criteria of the provision. But because I have nothing better to do than prove this… 

So I was welcomed in by the manager of the provision, she was fantastic, she explained how the provision was led by the young people. No set menus, no set activities but led by the group in at the time. Big bonus points right there.

She asked me to give her some information on Z and information from me as his mum rather than reading a file. I nearly had to ask her to repeat that as I thought I had misheard. She had just scored major bonus points with that question. At work I always tell parents to start with information on their child as a child not their needs.

So I began to give her some information on my son, his humour, his questions, his stubbornness and his fierce independence. I could see her facial expressions change when I told her he goes off to the shop on the corner with his cash card and comes back with food. It was clear that she was questioning this referral and if this provision was the best place for Z. She also thought it was great that he did this. I sat there wishing that this was a suitable provision as I had respect for this manager running it. (see I don’t hate everyone)

Anyway we had some further discussions about his needs and what would be required to support him there and she showed me around. It’s a lovely provision, very homely and inviting. But as I had already seen on their website no ceiling track hoist and only one electric bed. Individual bathrooms with baths and a small roll-in shower cubicle placed in the room with the toilet cubicles. No shower chair, we would need to bring his own and no specific disabled toilet. She did tell me there was a wet room downstairs they can access but I got the impression she didn’t think that would help facilitate his inclusion or independence.

As I looked my heart sunk, and broke a little more as is often the case in these situations. I thought to myself  Z’s social worker and her team manager have said this is a suitable provision! What Fricking hope do we have!!

All my Duchenne parent friends reading this are probably horrified. I won’t go into the details but imagine if you wanted to ‘go’ in the morning and the only way to do that was with the cubicle door wide open!! 

We then went to the dining room, again a lovely room. I looked at the table, and this is where my expertise as ‘just his mum’ comes in, as I could see he wouldn’t get to the table to eat as his wheelchair would not fit under it and he would not be able to prop up his elbows on the table to be able to eat independently.

I explained all of these things to her and I think she was on the verge of giving me a hug!

This provision wasn’t set up for children/young people with physical disabilities it is specifically for those with severe/mild learning disabilities. My impression is they are adapting as they go due to the demands in service but also hampered by lack of funding. She hasn’t even met Z but you could tell she wanted the best setting for him even if that wasn’t her setting.

So to recap as I am rambling and ramble when I am annoyed.

The shortbreak provision that my social work team have deemed suitable and have named in the assessment  would mean :

A 40 minute plus trip up the A1 on a friday night (nightmare)

The main entrance is stairs he would need an alternative which there is but I actually didn’t see the lift

Use a mobile hoist something he isnt used to yet

Sit and go with the cubicle door open with no wash/dry facility (that right there at 16 is a big no.)

Not be able to eat independently

Not be able to shower unless we can get a shower chair there so that would mean two 40 minute trips up and down to take his up there. We can not fit Zak and the shower chair in the car at the same time. (Funny social work degree won’t teach you things like that)

Mobile phones are discouraged and advised to hand into the office overnight – although I think Zak would have been allowed his if I had pushed it.

Potentially not have any peers that would communicate with him on his level

But this is the suitable provision that will meet the need for Zak to start to build independence and to give us some overnight respite from the 3-4 wake up calls through the night.

So I chatted to the manager a bit longer and then I think between us we came to a decision that this wasn’t a suitable provision. I thanked her for her time. (I really did like her we need more of her type)

I made my way back home to try and salvage what was left of my day off.

I have ticked the box, I have not dug my heels in and I have been open to what the social work team have put forward but how frustrating is it when you have the conversation and you tell them that the provision isn’t set up for wheelchair users.  ‘But they are Mrs R we have children who use wheelchairs there, there is a lift.’

Do we really think in this day and age that a lift is the be all and end all of an accessible provision.

But because my 16 years of being his mum and my last 2 years of supporting Z through the awful transition of physical independence to physical dependence counts for nothing then I am not listened to. I am difficult and just overly anxious or have unrealistic expectations – sorry but if the fact I expect my son to be able to have a shit in peace and privacy and be able to feed himself when he still can, well if that is difficult and if that is having high expectations well yes, yes that is most definitely me !!

If this is choice and control, if this personalisation, if this is social care then you can shove that plan where the sun does not shine!

Why can’t we get this right? Personalisation as been on the agenda for almost 10 years, why are

a focus on outcomes not services. a positive approach to risk.service users still having to fight against those who hold the purse strings and those who write the assessmements. Why do we still have professionals in the field who do not get the whole ethos of personalisation. I was somewhere the other day and was horrified to hear some of the opinions people in health and social care have when offering packages of care

PersonalisationWhy are we still not looking towards to outcomes for individuals and only looking at need. And why are we still trying to fit every disabled person/child into the same round hole. It does not work!!

Parents are labeled as difficult if they ask for alternatives no we are not difficult we are proactive and have to be that way because the system is not.

Do you really think I have the energy to be a difficult parent for the sake of it? NO! I am raising three children one with a genetic condition and two that are girls (say no more) one is hormonal and the other is just a crazy 4 year old. I am working more or less full time I do not want to be wasting time petrol and energy on ticking your stupid boxes and fighting against the system.

I spent the 37 minutes back home partly on the phone to my husband whinging about what a waste of a trip that was and how I was right all along bla bla bla and the other part of the drive devising the email to the social worker and team manager.

What do you think?

Dear XXXXX

Thank you for the opportunity to explore the shortbreaks provision that you have deemed to be suitable for Z  to meet the needs that you have assessed.

I have visited today and although a lovely provision knowing Zak and his needs I do not feel this would meet his current needs.

He likes to poo in peace, he likes to eat at a table and he likes a shower, none of which he can do at the provision.

Would you like to now refer to the provision I originally suggested months ago

I am concerned that if this is not addressed soon that the Local authority could be seen to not be meeting the assessed needs of my family which is written down in his plan.

Alternatively you could give us the equivalent as a personal budget (I can explain exactly what that is if you like)  I thought  we could manage the budget and then purchase weekends away for Z with a PA. He could visit different places go and out and have fun! This would meet all the outcomes as well as catering for his needs and ours and of course I would keep receipts. 

I look forward to hearing from you.

PS I hope the local SEND inspection has not been too traumatic for the local authority. 😉

Then as I pressed send the whole house blew up and the whole of Northumberland CC IT systems came crashing down as a mere parent suggested trying to take control of the social care purse strings and have some choice and control for her sons support ….

Creativity is a swear word up these parts.

Logging off as a  very fed up, disgruntled, frustrated parent #difficultparent

But a parent none the less and a Mum who will fight for her son to have that choice and control.. Now do I go for a run or have a gin 😉

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Enough of the Cheese

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I hate this time of year – I love Christmas but after the last present has been unwrapped, the last bit of Christmas dinner eaten or fried up I am done with it.

Because what comes after boxing day is just days of limbo waiting for the turning of the new year and I hate that part even more.

I like order, I like tidiness and I can’t do unpredictable or uncontrollable and those few days of ‘crimbo limbo’ just make me anxious, down and insular.

I have to force myself up and out, My Mum will be surprised to read that I actually don’t indulge too much in the alcohol or chocolates as I know if I start I wouldn’t stop and then come New Year I will be berating myself for the extra pounds put on.

During the lead up to Christmas I am busy, busy shopping, planning and ensuring that we all have an amazing Christmas one to remember, another memory for the box. When you have a child who, one day, you know you will face Christmas without you try and make the most of every moment. Capture every smile, every laughter, every present swap just so when they are gone you have something tangible to look at and hold. Memories – because one day that is all I will have.

This year however I had to take a step back from the camera, over the last year I have learnt alot about being present, being there in the moment instead of looking on from a view point years down the line and trying my hardest to capture it to box it up. So after a few token surprise face photos I put down the camera and I looked through my eyes instead of a lens and I saw firsthand the smiles, the laughter, the present swaps and as I saw each one with my own eyes I stored them deep in my heart. I buried the fear of a Christmas without him deep deep down and enjoyed the Christmas with him. (as well as with the rest of them obviously)

But then come these days, these days where they all blend into one, where you get fed up of turkey, cheese and crackers and the thought of another mince pie makes you wretch. The days where seasonally they are dark, cold and wet and all you want to do is stay indoors, in bed and hide away. Or maybe that really is just me?  I know that in a couple of days time New Years Eve will hit and I will have to plaster a smile and pretend to celebrate another turn of the year and make plans for 2018.

I can no longer make plans – look too far ahead because the future scares the absolute shit out of me. There have been so many changes in the last year what can happen next year? Plus on top of all that I am turning 40 in 2018 and let’s face that alone is depressing.

But back to today, the kids argued all day, the weather was crap, all I saw on social media feeds were kids having fun sledging, building snowmen and pretty pictures of snow. We had rain! Awful heavy rain and it stayed dark most of the day. I stayed in bed for as long as I possibly could then when the guilt of doing nothing got to much I got up and had a shower. I then remembered that actually it’s ok to feel like this, maybe in some strange way it is normal, like some sort of Christmas comedown. My only way back up was to write off today accept the feelings and practice some self care and self love. So I put some music on, put a face mask on and then played mousetrap with the kids. They still fought like cat and dog (or should that be cat and mouse) but we managed to get through three games relatively unscathed, Then after more cheese, crackers and pate I retreated to bed accompanied by violet gin, my thoughts and this blog, whilst my amazing husband watched Harry Potter with the girls and Z went on his new game. Which incidentally I can hear blaring out of his room!

There have been days like today before and there will be days like today again. On this journey sometimes it feels like  I stop  under a very dark cloud and you know what that is ok. What is not ok is to make it home and to settle there.

Fearne Cotton, in her new book Happy, refers to the Pendulum therapeutic tool

‘We all feel scared of getting too happy, as its often sidelined by the fear of that moment ceasing to exist. Fall into good times feeling safe, but knowing of course that it will have a natural end. The same with the darker times. All this too shall pass. If, like me, ‘blue’ or ‘black’ is one of your go to states, let it come and pass naturally. Don’t get stuck in it for too long and dont feel desperate to block it out or numb it with other feelings. There’s room for it all.

Fearne Cotton (Happy)

Tomorrow is a new day….

2018 is a brand New Year full of empty pages ready to be written and if I let the dark cloud s

starswallow me all that will happen is my hopes and dreams will be spat out and if we don’t have hope we have nothing.

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

My manifesto – finding Calcutta

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I think for me this has been the most emotive election I have been able to vote in, people who have never engaged in politics before have been vocal on social media platforms, and more young people have taken up the call to register to vote.

According to one source

More than 714,000 young people have registered to vote since the snap election was called. This was following a series of social media campaigns urging Facebook, Twitter and Snapchat users to sign up.

Our under 25s have sent off nearly 16,000 more applications than any other age group since the Prime Minister announced the snap election on 18 April.

They made up more than a third of the 150,000 potential voters who registered that day – a spike of around 140,000 in 24 hours.

I think this is amazing, our young people are our future and we need them more than ever engaged in grass root politics and standing up for what they believe in. Instead of adopting a ‘what is the point attitude.’ The young people I know and I have seen on social media have really got involved and have voiced opinions and most of all believe they can make a difference.

We are not all going to be happy with the result of this snap election, I have seen some extremely heated debates, mostly on Facebook, and I know I am going to be gutted if the party I vote for does not win. However one person said to me today, who actually is of the same voting persuasion as myself,  he said

‘At the end of the day it won’t change anything, It is us (as in we the people) who make the world work’ and you know what he is 100% right.

So I challenge you – Be your own party, have your own manifesto, be determined no matter what the outcome tonight/tomorrow morning that you will make a difference where you are and with what you have.

My manifesto would be one based on Love, Forgiveness, Justice, equality and Humility

My party pledges would be

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1. I will promise to look out for those in need, to bring comfort where there is pain, to bring joy where there is sadness, to bring love where there is hate and to bring peace where there is conflict. (sure there is a song in there somewhere)

2. I will bring up my children to be law abiding citizens and to be compassionate

3. I will instil in my children the value of work and of contributing to society in the individual and unique ways that they can

4. I will use my talents and my gifts

5. I will respect the rights of my neighbours

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6. I will spend my money wisely and support the local economy wherever possible

7. I will speak up for those who have no voice and stand with the marginalised and the oppressed and you know what this won’t always be done in a quiet and calm manner, sometimes we have to shout, we have to get angry and we have to get into that metaphoric temple and turn over those tables! Injustice makes me angry, sometimes standing up for what matters is hard work and actually you may not always be popular for it.

8. I will go forward in love and not look back in hate

9. I will speak a language of truth and love and not one of lies and hate

10. I will care for my loved ones young and old with dignity and compassion and I will fight for the rights when they can no longer

11. I will support my children to make wise choices

12.I will respect our public services and I will not waste resources but use them wisely

13. I will be charitable with my time and my money

14. I will not expect anything handed on a plate but will work for the best possible outcomes for myself my family and my community

15. I will be a critical voice where needed and on issues that matter to me and my community

Who is it that said ‘Be the change you want to see in the world?’

actually that is a misquote as I have just found out from google

This is the closest verifiable quote

“If we could change ourselves, the tendencies in the world would also change. As a man changes his own nature, so does the attitude of the world change towards him. … We need not wait to see what others do.”

Ghandi

We can all make a difference to someone and we can all make a difference within our communities.

To some this may seem emotional bullshit but to others it will hit the spot. Depending on who is in power tomorrow morning when I wake up ( I will fall asleep during the election coverage) I may have to work hard at my pledges and I will have to become better equipped to stand with those who are marginalised and to ensure a fair and equal society BUT whoever is in power I know that we can all still make a difference.

mother teresa

 

and so before I go to cast my vote let me leave with you with this fabulous song!

I am starting with me….

joyful noise man in the mirror

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.