When I’m well rested and full of vitamin D and Wes gives me the occasional smile it’s easy for me to be positive, especially for his sake. It’s easy for me to forget we’re in a dire situation while staring longingly — expectantly — at the pictures of all the biliary atresia kids we know who are living life post transplant. Today was not one of those days. Wes is uncomfortable because of his swollen belly, his GI unrest and his itchiness — all symptoms of his worsening liver failure. He can’t rest easily.
My heart was equally in unrest. The “gravity” of the situation came crashing in. In my chipperness the liver surgeon recently reminded me of the gravity of this surgery and Wes’ situation. My son is entering liver failure — slowly dying. Watching him languish hurts me unlike any physical pain I’ve ever been subjected to. That’s why I can face a major operation (God willing) without regard for myself. The physical pain won’t compare.
His doctor told me today that they’re waiting on Humana’s official transplant approval in order to put Wes on the transplant list. At that time I can begin my living donor testing at Emory, which should be about a two-day process. Then we’ll know and we’ll decide how to move forward.
Keep praying. We need God’s spirt on us fresh. We need grace for each moment. Today I defied doctors and fed my child while he was NPO because I’m exhausted and I couldn’t bear to hear him cry any longer. Next week going home is looking uncertain. I’m not sure if we’ll be going home from this place without Wes’ new liver.
I’ll leave you with the lyrics to the song that has brought me some peace today:
Sweet Comfort
By Sandra Mccracken
Whatever my God ordains is right
His holy will abides
I will be still whatever he does
And follow where he guides
Sweet comfort, sweet comfort
Yet shall fill my heart
Sweet comfort, sweet comfort
Sorrow shall depart
Whatever my God ordains is right
He makes my feet to stand
Though sorrorw, need, or death be mine
He holds me in his hand
This bitter cup, I take it
My fainting heart restored
So here I stand, unshaken
I trust upon the Lord
He is my God though dark my road
He holds me, I shall not fall
Whatever my God ordains as right
To him I leave it all.