I place him on my bed and pull the covers up over him. He snuggles down with a grin so wide it screws his eyes up. I lie down next to him and close my eyes.

Sometimes he resists his afternoon nap; he’ll slither off the bed, throw cushions off the chair and clamber up to look out the window. He’ll tell me what he can see – ‘car!’ or ‘bir!’ – repeating the single syllable over and over again in the hope of getting a reaction from me. I pretend to be asleep, and pat the bed next to me and he eventually returns.

Other days, he is so tired from his night-time partying or early morning wake-up, that he conks out almost immediately.

Today it is an in-between day. He’s not in bouncy-Labrador-puppy-mode, or too exhausted. He chats at me for a bit, and shifts position a couple of times. I try not to look at him or I know he’ll want to play more.

IMG_7007One stubby finger pokes me forcefully on the nose – ‘Beep!’ – then explores up under my glasses to squish my eyeball. I suppress an urge to giggle. His hand then reaches up to my hair; it’s just long enough now for him to twirl. He’s a little frantic at first, tugging and pulling as he tries to wind my hair in his fingers. Soon though, the habit calms him; the movement slows and ceases, his hand resting heavy on my face.

I carefully lift his hand down. He startles and semi-wakes. Shuffles round to tuck arms and knees under him, bottom in the air in classic toddler sleeping position.

While I watch him sleep, all my worries about treatments, appointments and paperwork recede into the distance. Hunter Syndrome has less power over me. I gaze at his face and listen to the ever-noisy breathing.

There are things I need to be doing – downstairs is a tip, and the washing basket is full again.

They can wait. I’m busy right now.


  1. Sarah

    Your love for him really shines through in this post. I know it’s always present, but this one positively glows with it.

  2. Ger

    Just beautiful. reminds me of Ethan many moons ago now. ..thank you x

  3. I miss this precious time with my children. Treasure these moments for the beauty and love they hold.

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