Parenting a child with additional needs or disabilities can be hectic; sometimes it can be a bit overwhelming too, with so much to juggle, so much responsibility, so much unpredictability, so many battles to fight for our child, especially in these difficult times. So when precious moments come along, little oases in the struggle that is daily life, it is important to cherish them, to enjoy them, to squeeze every single drop of joy out of them, a bit like we did with a very special moment a while ago.

James is 17 now, a proper teenager, and as a proper teenage he finds getting up in the mornings hard and prefers a lie-in, especially as there is no school at the moment during COVID-19 lockdown. Sometimes a crowbar is needed to lever him out of his nest in the mornings, but this wasn’t the case on this particular Saturday. This particular Saturday morning was different and very special.

We didn’t have a lot going on that Saturday, so it was a slow start for us all. After a couple of busy weeks responding to work requests in the middle of the Coronavirus crisis, not having to rush out of bed was a welcome change and the opportunity to lie-in a little was taken. What was unexpected, but delightfully welcome, was what happened next…

We heard footsteps coming down the stairs (our bedroom is on the ground floor), and quickly heard James vocalizing a few sounds. His den is at the bottom of the stairs, and we thought he was heading there to slowly rally for the new day, but his footsteps continued towards our bedroom. At first, a feeling of dread grew within us. James has sometimes handed us something unpleasant (I’ll spare you the details, but some of you might have shared a similar experience; we call it ‘brown alert’!). But as James pushed the door open and came in, he wasn’t bringing us anything, other than a lovely smile.

He clambered onto our bed, and giggling with delight, he squeezed in between us, pulling the duvet back up as he did so. With a beaming face full of joy and love, he just enjoyed the moment of being with us, snuggling in together. Now, as I mentioned, James is 17, and this moment was not that long ago. James is as big as we are, and as he spread out in bed, after a while there wasn’t much space! Clare eventually got out to go make a cup of tea, leaving me and James to some son and dad time together.

We practiced some of James’ repertoire of words; he doesn’t have many, but he enjoyed practicing them. By placing his finger on my teeth and lips, he concentrated hard to copy my mouth movements. We had a story together, made up on the spur of the moment, as I didn’t want to leave the bed to get a book. We even sang a song (well, I sang, James joined in with an occasional word when I paused for him). I took the photo at the top of this blog post to capture the moment, it was a wonderful, precious time with my son, who is growing up too fast. How many more times will he come and spend a time like this with me?

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