He deserves to live a "normal" life and enjoy a "normal" childhood. Needless to say, I'd give my life or my health for him to be healthy. If it were so easy, I'd have done it a while ago.
I guess I can only continue looking for the right doctor and the right therapy, reading about new cures and therapies while praying and holding to an empty faith. I often wonder if I've done something so bad that I must now pay with my little boy's health and life -- some twisted form of punishment that slowly robs my son's life.
The pain and desperation of seeing my little boy helplessly sick was one of reasons that brought me back to God (http://project05952381.blogspot.com/2008/12/confused-no-news-there.html). If this was the reason for my child to be unhealthy (so many doctors, so many hospitals, so much medicine that has done more damage than good if any good at all), the purpose was fulfilled. Yet he's still plagued with medical conditions.
These past eight years or so have been hard to bear -- some days much more than others. I hope God gives me the strength not to lose my cool and be able to be the father my little boy needs.
"I have had patients of my own so well in hand that they could be turned at a moment's notice from impassioned prayer for a wife's or son's 'soul' to beating or insulting the real wife or son without a qualm."
CS Lewis, The Screwtape Letters
At the end of the day, he'd fall asleep in my arms as he usually does and give me a hard time to go to school or therapy the following morning.
At the end of the day, I love my little boy and will take care of him even after I die -- making plans and preparations for something I wish I'd never have to rely on.
Then again perhaps I should take the following message from a dear friend of mine.
"Forget the former things; do not dwell on the past. See, I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the desert and streams in the wasteland."
-- Isaiah 43:18-19, NIV
Nonetheless I just can't leave it in God's hands. I must try all possible solutions, therapies and/or cures. I just pray for God to guide me to the correct solution, therapy and cure. I know God will deliver, but I don't know when or what.
* Enjoy your birthday, my little monkey. Daddy loves you now and always.