Friday, June 8, 2007

I don't want to miss a thing

I am so very proud of our boy. It fills me with happiness to think how he has bravely come through such challenges.

Yuka gave Reuben a Thomas the Tank engine. It's about boys being boys and it connects us with the families with healthy babies, their sons playing planes, trains and dinosaurs. I want more than anything to reach that stage of acceptance. Sometimes I think I'm almost there but then the doubts creep back in, but perhaps one day the doubts will be fewer and further between. But I want too, in accepting that uniqueness, to give him as experientially rich a life as possible, to do everything that we love to do, from music to the great outdoors. A few weeks ago I was thinking rather negatively, I won't be able to work again, but now my thoughts have turned to, I don't want to work again in the conventional sense, because, to coin Erica's wedding song, 'I don't want to miss a thing' about his upbringing and about giving him the beauty of life's greatest experiences, for which all the time in the world would never be enough.

For the first time yesterday, we were approached by our case manager and she mentioned the magic word 'discharge', maybe 2 weeks away the Dr encouraged. There is such renewed hope...


skeybunny said...

Hi Reuben,

You are a sweet little guy. I'll be back to check on how you are doing.

Sarah (mom to Evan, 23 months, ChaRGE)

Yuka said...

such a lovely photo of Thomas - all cheeky and waiting for Reuben to roll him about on the high chair tray...... :o)

Laura said...

Reuben will have a great life & I know you must be feeling scared at times. You & Jason will be amazing parents to Reuben & he will have a fantastic life.
You are being very positive & that is a good song to listen to ("I Dont want to miss a thing" when you are feeling stressed.

PS im sure Reuben cant wait to play with Thomas hee hee.
Cousin Laura