Dear Mark,

7,670 days!!!! That’s how long it’s been since I last heard your voice, or saw your face, helped you with your homework or brought your dinner into you. 7,670 days but it only seems like yesterday!

Seems like only yesterday since that cold February morning. The morning that Duchenne took over your weary lungs and we had to say goodbye. I don’t know where you are right now, but I’d like to believe that you are running free somewhere. That you’ve felt the wind on your face while riding that motorbike you always wanted. That you’ve experienced the thrill of driving that racing car you always admired. That you’ve delighted in the freedom of running as fast as your legs will take you and that you’ve mastered that electric guitar and strum a little or a lot every day. All the things Duchenne would not let your earthly body do.

I hope you know I loved you and that I love you still. That I miss you every single day. I miss your smell, and the sound of your voice and the feel of your newly cut hair. I miss your jokes and the key ring collection and the posters on your wall (even if they were a little raunchy towards the end). I miss our Sunday TV nights, your stories from school and your friends hanging around. I could go on and on but mostly I just miss my brother. It’s been so long but it only seems like yesterday.

A lot happens in 7,670 days. We’ve had our ups and downs since then. We’ve had birthdays and weddings and graduations. All in all, 27 new babies were born in our family in those 7,670 days when you include the cousins, I know how much you loved ‘the cousins’. We’ve had new homes and jobs and proud moments. We’ve also lost others we love. We’ve had squabbles, and worries and disappointments. But no matter what happened, there was never a moment when you were not there. We speak of you often, dear knows I speak to you often. And even when I think of all that has happened, it still seems like only yesterday since we had you here with us.

It seems like only yesterday since you used to tell us what you would do if they would find a cure. That was quite an impossibility then but now the future looks a little brighter. I don’t really believe that cure is coming soon or even in my life time. But Mark there is a chance. A chance to change Duchenne. A chance that boys like you can walk a little longer, play a little longer, dance a little longer, hold their hands up in the air a little longer. A chance that our wee Luke might live a little longer.

Today is Rare Disease Day and the theme is ‘With Research Possibilities Are Limitless’. I hope that you are smiling somewhere at the thought of what could be. I know that you would adore Luke because he is just like you – a loveable rogue at 5 years old. I’m trying my best to play my part in making your dream of a cure come true and I hope that you are proud. But I think what we will manage may just fall short, but with any luck, what we do find will mean that I don’t have to write to Luke and tell him ‘it’s seems like only yesterday’.

With all the love in the world Mark

Until we meet again!

This week I bumped into an old friend and a follower of Leap for Luke. She said she couldn’t imagine how difficult it must be to have a child with Duchenne and asked me where I found the time to do all I do. She’s not the first to say these things and I never really know what to say. So tonight I’ve had a think about it and here is what I’ve discovered.

It’s business as usual really.

Just like yours, my bills need paid and so I go to work.

Just like yours, my fridge needs filled and so I do the grocery shop.

Just like yours, my kids want to play and so I get in on the action too.

Just like you, I have school runs and homework and bath times and temper tantrums. I have a house to clean and clothes to iron and errands to run. I trip over toys night and day and I’d swear there’s a secret family living in my house because there’s no way my kids make all this mess themselves.

Just like you, I love my kids more than anything else in this world and just like you, I would fight tooth and nail to protect them, to keep them safe from harm, to keep them fit and well. To keep them in my arms for just a little longer. Just like you I adapt to suit the kids.

But one of my kids is not safe from harm. He has Duchenne Muscular Dystrophy and his life is at risk. So for me that love means averaging 4 hours sleep a night because steroids, the only thing I have that might have any chance of keeping Luke on his feet, have him up and full of beans before the day has broken. For me that love means neurologists and cardiologists and endocrinologists and physios and OTs and Special Needs Statements. For me that love means my heart breaking a little more when I see my Luke struggling with those simple things that are the first signs that his condition is really real, even if he looks perfectly healthy. For me that love means hours of reading, hours of research, hours of campaigning, and hours and hours of fundraising work. For me that love means working every hour that I can, whether in my paid work or in my voluntary roles to make sure that I can say I tried with all that I had to save my baby. For me that love means preempting and planning for difficult conversations that lie ahead with both my boys. Conversations I really wish I didn’t have to think about. For me that love means sometimes thinking towards a future that I don’t want to even contemplate, a future where I can no longer see and touch and hear my Luke. And it’s when I think to this future that the ‘business as usual’ mentality breaks down. Though it only ever breaks down temporarily because for now, while I moan about no sleep, I treasure every night that Luke is able to get out of bed himself, and while I groan about the boys fighting, I’m thankful that they still can. And while I push myself to limits I know I shouldn’t, at least I know I’ve done it with love.

For you, that love means something else. You have struggles that I don’t understand and I would find difficult to manage. For you that love means sleepless nights for reasons I know nothing about. For you that love means fearing for an unknown future that I couldn’t comprehend because I am not in your shoes. For you that love means that you work hard to keep your children safe, and that love means you do everything you can to make your kids’ lives fulfilled. There may be things that throw you off your ‘business as usual mentality’ just like everyone else, but you always climb back on that ‘business as usual’ horse and get back to it.

So you see we are no different.

Just like me, you love your kids more than anything in this world and you will do what you must to protect them, to keep them safe and well.

Just like me, you have bills to pay and so you get them paid.

Just like me, your fridge needs filled and so you do the grocery shop.

Just like mine, your kids want to play so you get down on the floor with them.

Just like me, you have school runs and bath times and temper tantrums. You have a house to clean and clothes to iron and errands to run.

Just like me, most of the time it’s just ‘business as usual’ and that makes us just the same.