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.