I'm being a whiny baby right now, metaphorically pitching a little hissy fit. If you were to see me, you'd not notice anything. It's only internally.
OK ... here goes.
I don't WANT to have two kids who have life threatening conditions. I want God to come along and just snap His finger and Manny and Jacob be completely healed. Instantly. And yes, I know He will use this for His glory. Yes I know He is in charge and that He will do this in His perfect timing. And yes I trust Him to supply the strength and favor and direction to get through all this too.
But I am feeling overwhelmed and not sure I'm up for more fight. (Thus my fit I'm pitching internally.)
We have been praying DAILY for Jacob's complete healing. We know God is completely able, willing, etc. We have seen Him do much bigger than this. So we are in faith for the miraculous.
Today I took him to the Nephrologist. He's worse. Not a lot worse, but not better and cerainly not completely healed.
So I sat completly numb as the doctor explained my choices of immunosuppresants for Jacob. She dutifully went over the side effects and risks and benefits. I sat nodding like I was with her but I wasn't.
My heart isn't in this.
I don't WANT to shove toxic drugs down my 12 year old's throat. (Ironically, one of the major side effects of these drugs is kidney damage ... uh ... anyone else see the problem with THAT?) I don't want to have to choose between Toxic Drug 1 or Toxic Drug 2.
I don't WANT to decide what alternative medicines I might consider.
I don't WANT to do a genetic blood test to see exactly which type this is. If it's one, she's talking months until dialysis and less than a year to transplant.
I don't WANT to think about things like dialysis and transplants.
I don't WANT to wait for the genetic test results and worry if Kaley also has this disease.
I don't WANT to test his urine weekly to see if it's still 4000 (when it should be under 30).
I don't WANT to watch my son get weaker and weaker. Be able to walk only a few steps before he is fatigued. To be sleepy and exhausted all the time. To be worried about what is wrong with him.
I WANT my son healed. I WANT my son whole.