Just over a week ago, our health insurance cancelled his nursing services.
From 40 hours a week to 0 hours a week (although on paper we still have nursing – under a benefit that does not exist [sigh])!
Rough blow. Very. Another battle has come to my front door.
The phone call brought me to tears. The case manager said she understood. I told her she did not.
It seems that every day miles and stacks of paperwork line up between my son and his needs. People in offices far away that have never laid eyes on him make critical decisions about his care on a daily basis.
In each mile, in each piece of paper, a bit of his humanity is taken away.
Now appeals need to be written, services applied for, phone calls made. The flurry can lay me low – so low. I cannot do it. Not today. (I will, just not today.) I must preserve some piece of myself for the next fight. I learn every day and hour that I can only do so much, that sometimes the tyranny of the urgent is just too tyrannical. Attempting to slow.
It’s like this:
M just ran out of jelly making her sandwich and began be get upset. But, I knew better. I had another jar.
He always has another jar. I have confidence in this. In this jar switching madness that life can be so full of – there is purpose. The jar switching, the leaps of faith, the running to the cupboard over and over makes one so weary, and He gives such hope!
I take great comfort this morning in the words of Philippians 3. Suffering the loss of things can be great gain for eternity…if we press on, if we look to him in faith, if we dwell in his word, if we bow low on our knees…then even in the ashes…the rubble of this world there is the great “gain of Christ”. I want to “be found in Him,” no matter what I loose in this life.
I look at these pictures and am just so thankful for this amazing child that defies the odds, and that brings such gifts into our home. I’ve made it to 999 on my list and today is a very good day – a day full of good things. I want to open eyes wide to take in.
This slowing down, this putting things aside to rest, has been such a gift. I had a precious 2 hours kid-free this morning. I didn’t write an appeal. I did not make phone calls. I scribbled in my journal. I read. I wrote down thanks. With each word I wrote, I think there is a little extra dose of peace put in place to guard my heart. Now to remember that – to take grip of it and not let go!
Each time the bottom falls out and picket fences of expectation tumble, we have an opportunity.
In every loss there is an opportunity to gain.
The ultimate jar that we take hold of will put all others to shame!
Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. –Philippians 4:6-7
*I should add that in God’s great mercy, our school hired a great nurse to work with our son just 1 week before we first heard this news! This cut makes evenings more trying (especially with my husbands night classes) and summer may be especially tough, but we’ll see. Praying that God provides either through other means or our appeal being granted by that time. In the meantime, the battle ensues…and some mommy time on the side, for sanity’s sake!