Two posts in one day, aren’t you blessed. Anyway, just thought I would share one of those little moments with you which make each day worth fighting for.
This morning, Oscar came to see me.
I was laying in bed watching TV when Louise placed him in my lap. He turned to face me and crawled up my chest, ever-determined to reach nose level with me. He then proceeded to gently remove my mask, plant a kiss upon my lips and replace the mask allowing me to breathe again!
This one little thing counteracted all of the not so good things that happened today.
All Neil had was his voice and his smile to entertain a one-year-old, it’s a tough gig, especially when you remember that talking took Neil a great deal of effort and too much of it would make him very tired. Neil never complained if Oscar seemed indifferent to him, but it must have been heartbreaking.
From Oscar’s first birthday onwards there was never a moment of privacy for the two of them, Neil never got to be the one with Oscar’s full attention – there was always another adult in the room. For safety’s sake, somebody had to be there for both of them, there were too many enticing buttons for a one-year-old to go pressing; the ventilator, the profiling bed, the hoist and chair buttons, and the ventilator pipe could easily have been pulled too. Neil couldn’t stop anything happening with just his voice.
We weaved these little meetings into our daily routine, a visit to Daddy’s bedroom before morning nap, lunch and dinner facing each other in their chairs and milk on Daddy’s knee before bedtime.
You can imagine how much this meant to Neil that Oscar took his own initiative to remove the mask and give his daddy a kiss. It’s always amazing to see children at this age starting to do things for themselves but this little intended gesture meant so much more to us. It meant that Oscar cared about Neil, despite not being able to push his swing, or carry him on his shoulders, or tickle him to squeeze out a laugh. There was no cuddle time any more, Neil couldn’t hold on to him and the weight of Oscar on Neil’s chest would have been far too much for him. I’m glad I didn’t have time to jump in and stop Oscar from crawling on Neil’s chest this time. We could have so easily missed it by being too cautious.
These photos are of Oscar sitting on Neil’s knee for his milk before bedtime. Again, these are images that explain the emotions in our house far better any words can. – Louise (2013)