Source: Being Present
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.
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.
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.
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. Xx
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
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
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.”
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.
and so before I go to cast my vote let me leave with you with this fabulous song!
I am starting with me….
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, cast 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 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 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.
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 are 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!
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.
So I find myself back on a train to London.. Representing Duchenne fighting for my son, fighting for this generation of kids with Duchenne, Fighting for a chance.
The landscape has changed since the last time I did this journey, it’s changed in a variety of ways.
1. There is a number of reputable, effective Duchenne specific charities/patient organisations of which Duchenne Now is one.
2. Duchenne research is accelerating it is no longer just a strapline, there really is tangible hope. The sort of hope you can get a grasp of. Ok so if your kid is over 12 it’s maybe a finger tip touch but for those with young boys with Duchenne you should really be able to take a good grasp on hope. Not a cure, but realistic therapies are on the horizon! Alternatives to the harsh steroid regime that yes keeps our kids mobile for longer but stunts their growth, makes them bad tempered and thins their bones.
3. Collectively our voices are being heard and we are being taken seriously (I think) we, parent organisations, have been invited to a meeting with NIHR and clinicians and in fact our patient organisations will actually out number representatives from health.
Two things however haven’t changed and that’s
1. We still don’t have ‘it’ yet
2. My fear!! My fear that it could all be too late for my son and for those I have shared my 11 year Duchenne journey with.
I’m sitting on a train having got up at 5am on my ‘day off’ for what? To change Zak’s future or ensure that the next generation of kids with Duchenne have a future? Jury’s still out on that one.
My biggest frustration as I sit here reading through the info is that 8 years ago there was a campaign led by the charity I was then working for (AD) to increase the current centres of excellence in the UK from two to five. We wanted a centre of excellence within 50 mile radius of every Duchenne patient. We knew the UK couldn’t cope with clinical trials as it was and we knew all of the great advances in research would be worthless if we couldn’t get them past the finish line. I’m also I have to admit angry and resentful. The opportunity was there to do the groundwork to put structures in place but the opportunity was lost. The words we spoke dismissed by others. We couldn’t do it on our own we needed the established MD charity to support it and we needed the support of respected clinicians. I’m sure behind closed doors the words were uttered ‘what do they know’
In my eyes and yes I’m ‘just a parent’ but in failing to commit back then to a strategy this generation of kids with Duchenne were failed.
My plea now is that the same mistakes aren’t repeated. For some it’s too late and that truly breaks my heart. For others the future can be changed.
In my little fairy tale world there would be a holding to account of those who thought they knew better. But in reality that won’t happen. But I live in a horrible sense of de ja vu. I find myself wanting to scream at those who I think failed my son. But what good what that do? Life is literally to short.
My hope is that we as a community now seize this opportunity with both hands that we make the right decisions and Duchenne clinical trials thrive within the UK. I hope that effective collaboration takes place that over rides the past, individual charities agendas, reputations, I hope that the ‘turf war’ ends and we can make up for lost time! Stronger together? I sincerely hope so!
A different way of looking at things…
A couple of years ago I was involved in person centred support planning training.
The guy delivering the training was a great advocate for person centred planning very passionate about it and spoke about how sometimes we get trapped in ‘Service Land.
“We have a special bus which takes people to the special centre or special school where in isolation they do special activities.”
At the time Zak was in year 4 in a mainstream school and although academically he wasn’t making huge progress he was doing well socially and was very much part of school life. I could be a ‘normal’ mum and take him to school and he could go to a regular out of school club and take part in school discos etc. So I sat through this talk on ‘Service Land’ agreeing that the best thing was for complete integration and to get rid of ‘Service Land’ and if I am honest I was feeling quite smug about decisions I had made for my child.
Two years down the line I have now had to revaluate everything.
Last week Zak started a new school and I suddenly I find myself in ‘Service Land’. Instead of going up to secondary school with his peers he has made the transition from mainstream to a local special school.
After being a firm believer in mainstream education for him I have started to see the value of the specialist provision for Zak. What changed my mind? Zak did.
When we started to prepare Zak for transition to secondary it became clear that he didn’t want to make this step, he didn’t want to continue to struggle academically. He wanted to be like everyone else not singled out anymore, not mothered anymore. He also told me he wanted to go to school without me. He didn’t want his mum taking him into school when all of his friends arrived independently. His best mate goes to special school and goes on his own in a taxi. Zak saw that as independence, I saw it as singling him out.
His mainstream school were great, which made the decision so hard. Some of you will have seen my Facebook status’s agonising over what to do. I had a Senco coordinator telling me they would move heaven and earth to accommodate him and I had a Head of the local special school saying Zak would thrive there and they would love to have him. Zak was popular, well liked and looked after in mainstream. They included him as best they could. He went on the residential trip, he was made house captain and he took part in the nativity plays. However as he progressed through school he started to loose some independence. For example he had to use his wheelchair to get around the large campus, he had to take different routes or go at different times to things. He had a lot of 1-1 teaching which meant he wasn’t always in with his peers. He had a teaching assistant who became part of our family but he did start to heavily rely on her, in such a large and busy school he needed her reassurance. Also the other children were prone to mothering him. When we did visits to the secondary campus it became clear that he would loose even more independence. The decision was clear, and Zak after visiting his potential new school was definite on what he wanted.
The last day of term was awful, not for Zak but for me. I was grieving; this was another thing that Duchenne had robbed me of. It sounds silly but I was so sad that it had taken away my opportunity to see my son go into secondary school all dressed up in a blazer and tie. At his leavers assembly though I had the opportunity to see just how far he had come in mainstream education. He got up and played a 3 minute drum solo in a hall full of parents with all his class mates watching. The confidence shone and so did his talent. He made me so very proud.
I have learned a lot from my son over the past few months, he is a great teacher!
I have learnt that what I saw as segregation he saw as inclusion and the chance to be like everyone else.
This last week he has sorted his own bag out and carried it out to the waiting taxi. He comes home from school and tells me what he has been doing. For the last couple of years all I have had is a grunt and ‘I have done hard work’
Last night he said to me ‘Yeah it is school tomorrow’
He has found his place, a place where he can learn on the same level.
The biggest thing I have learnt that sometimes I am so busy fighting for his ‘rights’ and needs that I am in danger of loosing sight of what he actually wants.
I will continue to advocate for inclusion in our society for all disabled people, of course I will and I still think there is a definite value in mainstream education for disabled children but I also now see there is a value in our specialist school system and there is value in having the choice between good inclusive mainstream education and good inclusive education in a specialist provision.
Of course last Tuesday seeing all the Facebook photos go up of Zak’s peers in their new secondary uniforms was hard, it reminded me that my life as a parent is in ‘Holland’ and it is different. However the smile on his face this morning when he was packing his bag and getting ready for school and the excitement in his little strut as he walked out of the house, reminded me that my world is indeed special and although full of obstacles and heartache it is also full of smiles, rewards and accomplishments.