Thursday, May 24, 2012

Menke's Disease

Everybody is unique, fearfully and wonderfully made, here for a wonderful purpose.
Compare not yourself with anybody else lest you spoil God’s curriculum.
-Israel ben Eliezer

This week was polarizing for me, personally.
And there are lessons from this week I will never forget.

The doctors that we saw this week for his follow-ups from the hospital told us,
in two separate appointments,
how they were both thinking Bradley had Menke's Disease.
Menke's Disease is fatal.
Most children with it die just after their first birthday.

And the docs were almost excited when they talked about Bradley having this disease.

I'm feeling a little disturbed by their excitement.

And most of the days this week, I sat on the couch and stared into Bradley's eyes and
held him and thought about how I would live life without him.
And I started making a mental bucket list of all the things we would need to squeeze into
these next few months if they were to be his last.
And I'd watch Tom bathe him as he would hold him closer for a moment longer.
Smelling his skin deeper. Taking him in. Doing the same things I had done all day. Just holding him.

Life is too short.

And the disease they said they thought he had was basically ruled out this afternoon
as I drove down to the lab and picked up that piece of paper that I desperately NEEDED to see!
His copper levels are within normal range.

Won't it be a shame, if it ends, and we have things left un-done.
I've got to do as much as I can with them NOW!
I want to live like we are dying, because at any moment WE might.
And I do not fear after we die.
I know it will be a happy place to go to.
I know Bradley will finally be free from the body that holds him back.

But if my children never know how much I truly do love them,
will they want to be with me forever after this life?
I've got to make this life HAPPY for us NOW, so that later,
we will ALL WANT to be together FOREVER.

It was a lesson that was learned with so much pain this week.
A heart breaking lesson learned.