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)
December 9, 2008 at 10:38 am
How wonderful… I have tears in my eyes.
We hope that you are all ok and looking forward to Christmas.
Lots of love
Aunty Pau’s & Uncle Mel
December 9, 2008 at 12:42 pm
That son of yours is just one amazing little boy, having said that what can you expect when he has such an amazing mum and dad.
Love and kisses to you all
Aunty Pau’s & Uncle Mel xxxx
December 10, 2008 at 12:17 am
as they say in interweb land… wub
December 10, 2008 at 12:53 am
Sees the target. Goes in. Achieves the goal. Puts everything back in place. All in all, an expert operation.
He’s a Platt.
Good lad, Ozbo.
All our love,
December 11, 2008 at 11:58 pm
My Dear Neil and Louise,
I was so touched by your interview on tv this pm. Thank goodness for people like you to highlight this evil disease. I will pray that you find the hope and courage to enjoy every day as much as possible. Mum wrote a wish list of all the things she wanted to do, even if they were adventurous one day and not too another, it kept us all going, and she could visualise and look forward to her next wish. One wish i have is a life rid of this dreadful disease. I do feel so much anger that we are a second class disease so many others get more press. Much much love to you all. You are in my thoughts. Prof Shaw is a marvel . Lou x