The Duchenne Clock

24/06/2015 17:35 BST | Updated 24/06/2016 10:59 BST

I wake suddenly and breathlessly, eyes springing open, heart thudding like a drum, as if I am a soldier on perpetual watch, and my first thoughts are for my sons. Theo fell three times yesterday, I think. His legs simply gave way. He could not keep up with Max, his best friend, who grows stronger and faster by the day, where Theo becomes weaker and slower. The disease takes its sinister hold.

How long do we have before he can no longer walk? I wonder. Time takes its course, and will not stop for him. Tick tock. Tick tock. The Duchenne clock. How I hate this ever present sound in my ear. How I wish time would stop. Klara wished for this yesterday, while lying in bed with Theo and Oskar, that time stand still for our precious boys. We do not want to witness their inevitable decline. But it will not.

Enough of this, I say, and rally myself for the day. But on my feet and in the shower, water running down my face, it is not long before my mind returns to Theo and the events of yesterday. He stood there, I remember, as he so often does, with a quiet dignity, watching Max run away from him and into the arms of another child. He knew his legs would not carry him, and so he watched them, Max and the other child, with an awkward mix of curiosity, joy and sadness. He was happy his best friend was happy, but also sad he could not keep up with him, which meant he was now alone. Theo then turned and looked at me with those blue grey eyes, which possess a striking glint of yellow, the very same as Klara's, his mother's - these eyes I can lose myself in - and asked, "Is Max still my friend?"

This question hurt, and I felt my throat contract and stomach tense. It hurt because it captured what his condition, Duchenne muscular dystrophy, is doing to him, slowly robbing him of his mobility, independence, freedom. Tick, tock. Tick tock. That awful clock again.

Not quite four, Theo is unaware of the severity of his condition. He senses it, that something is not quite right, that he and his brother Oskar are somehow different, but no more than this. He does not know the extent of his decline, the stages he will go through, which every Duchenne parent dreads, the legs going first, then the arms, until he can no longer even put his arms around me, and finally the heart... beating its last premature breath.

I walk back into the bedroom and sit on the end of the bed. Theo is still asleep. I love looking at him as he sleeps. He seems to embody such perfect peace. I lean over and stroke his skin with the tips of my fingers, then kiss his forehead a number of times and hold my head next to his. Then I lie down next to him and simply stare. I could lie beside him like this for hours, if I had the time. Tick tock. I am entirely his, I realise, will do whatever he asks of me. I will fight for him to the very end.

Klara and I inhabit a new reality now, almost a year on from Theo and Oskar's diagnosis. We accept he cannot run; cannot walk upstairs unassisted, and can only go down them on his bottom; cannot walk for long before his legs hurt and he must stop. But in all these actions that his peers do without a second thought, which they, and we, all take for granted, Theo persists, always smiling. Caroline, the pre-school manager, refers to his resilience, this quality he needs to resist the disease, to ensure it is life-affirming not life-limiting. How he will need to fight to nurture this quality as he grows and the disease limits him more, I think, as I lift myself from the bed and make my way to the front door.

I do not want Theo and Oskar to die before me. No, I want them to live far beyond me, to experience all of life, its many facets and stages. What sustains us, Klara and I, is trying to realise this, to do all we can to ensure they, and other Duchenne boys, lead long and full lives, not restricted by their condition but rather empowered by it, enabling them to nurture their spirits and fully embrace life in all its joy, pain and wonder.

But we cannot do this without the care and support of others, I realise, closing the door behind me and stepping out into the street. There are so many who have helped, who give us the will and belief to carry on. Our families, our friends, but also fellow parents of Theo and Oskar's peers, who are working so hard to help us and them. There is something wonderful in what they've come up with - Maria, Hannah, Rachel and others - a day of blue wigs and fun, Blue Hair Day, a day dedicated to Theo, Oskar and all the other boys afflicted by this cruel disease. It encourages us to laugh in the face of Duchenne, to face it with joy not despair, and herein lies the victory - the disease will not beat us, the clock will not govern my every waking hour, my sons and others will be afforded the time they deserve.

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