Kurt and I went out for dinner the other night, alone, to talk -
and with tears in our eyes and voices we both expressed how we feel we have lost Jerard - like he's died to us, but we still have his body and just a small spark of him left to care for.
Jeremiah 29:11 For I know the plans I have for you,
declares the Lord,...
His laugh is gone.
He had a great laugh.
The recognition of voices he used to register in his eyes only occassionally happens now.
So, how do I describe Jerard to others when they ask?
I don't really know what to say anymore....
he startles like a newborn.
he doesn't swallow.
he seldom makes a sound, except being picked up or bathed. Both seem to be very uncomfortable experiences for him.
And we each grieve in our own way.
Ben talks and tries to tickle him like he used to...and sadness etches on Ben's face as he gets no response.
Kurt snuggles Jerard with his beard. It used to make Jerard smile and laugh. But now? No response.
James puts his face up to Jerard and says, "Jerard, this is Kuya James. I love you, brother." And sadness registers in James' eyes.
James rubs his brother's head. There is a slight response of calm registered on Jerard's face. But oh so subtle.
He is a mix - there is some subtle response at times....
but mostly it seems like no one's home.
We hold him, bathe him, change his diapers, feed him, 
love on him, and hold him up to our ABBA in prayer -
praying that HIS will be done and we be faithful stewards in caring not only for Jerard, but for each of our children.
Psalm 39
...2 I was mute and silent; (Jerard is...) I held my peace to no avail,
and my distress grew worse....
...4 "O Lord, make me know my end and what is the measure of my days; ...."And now, O Lord, for what do I wait? My (our) hope is in you.
...9 I am mute; I do not open my mouth, for it is you who have done it.
...12 "Hear my prayer, O Lord, and give ear to my cry; hold not your peace at my (our) tears!
for I am a sojourner with you, ...13 Look away from me, that I may smile again, before I depart and am no more!"