While You Were Sleeping


I am watching you sleep, your breathing heavy and even. It is only mid day and you’re napping for the second time since you woke this morning.
I know this is your body’s way of conserving your energy, it’s also your body’s way of telling me it’s slowing down, that functioning is becoming a more difficult task.

I have known since your infancy that these days were ahead. Almost eight years later, it is not easier for my heart to absorb or accept this. Since we lost your brother, so suddenly, so unexpectedly, I have become obsessed. Obsessed with trying to observe any small sign your time to join him is nearing. It’s morbid, I know, but I am your mother, and this is my instinct.

You continue to sleep, and my mind continues to wander. It remembers your early years, when you still moved unencumbered by this disease. When your gleeful jumping and squealing was a constant. I hate myself for wishing for silence in some of those moments. Those moments are a rarity now, so rare in fact that my mind scrambles to conjure them, just to affirm that they existed.

You’re almost eight years old now, but your body and your mind are that of an aged old man, fighting to stay with us. The selfish part of me that wants to keep you forever longs for the fight to last many more years. The part of me that accepts that loving you the way you need and deserve knows that your quality of life is dwindling more rapidly than we had ever anticipated, and I must listen to the silent signals your body sends…and those signals say you’re tired.

Oh sweet boy, what I wouldn’t give to spare you this fate. I hope you know, that if I could I would swap places with you. I would lay down my life this instant with a smile and a heart filled happiness for the life you could live.

Your eyes flutter, and so does my heart. I climb into the sunshine washed bed and stroke your drool stained cheek. I beg a God I don’t believe in to freeze time here and now. It doesn’t happen. Your stiff body attempts to climb out of bed, but fails. I lift you, and hold onto your hands as you shakily find your footing. I can see in your expression that this is uncomfortable, but with each step, your muscles loosen. We walk together into the kitchen, your favorite place in the world. I make you a sandwich and you smile…food still brings you joy and for that I am grateful.

We eat in silence. I know that after this meal, another nap will follow. And these thoughts will return. This is the loop of our lives right now. As broken as that leaves me, I will be grateful that any moments with you still exist at all.



4 thoughts on “While You Were Sleeping

  1. My friend Kimberlee shared this on facebook. I’m a poet and writer and wrote this micro poem in response to your post (on twitter where I am @lylyee).

    These are the words:

    The loop of –

    straining against time and skin
    my eyes on your cheeks
    your breath in my heart
    time unravels

    – our lives.


    Sending you love and courage. X


  2. Ashley you are amazing at transcribing your feelings so well. You always bring out my emotions and tears. I love you and all your family šŸ’œ Your family truly hold a spot in my heart


  3. This is so heartbreaking. I have to ask how God can let thses things happen to children. I have a unshakeable faith, but I just don’t understand how this could happen to a young and innocent. Maybe it’s not for me to understand. But I will pray for him..


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