Duct tape

Duct tape over a broken window- the prefect visual for life right now.

It’s not pretty, doesn’t really work and every time you see it you just feel bad- poor even.

We are back from giving our daughter her first round of chemo therapy- we traveled to Washington DC to a specialist to do it- and it cost $25,000- like swiping your own personal credit card and signing a tiny slip of paper that says $25,000. Money seems to have zero meaning in a moment like that.

As I sat on the floor of our hotel room next to her sleeping tortured body my mind wandered to what I’d call a book about all this if I ever write one. I was delirious- up all night monitoring her vitals because I know what the drug we just gave her can do.

Delirium produces some good thought sometimes- pure, raw.

Drinking Darkness

Crazy Love

Waiting for the Stop

And my favorite…. I Just Wanted to Play Tennis

I’m pretty meh about God right now- I’ve been there for several months. Something about watching a child suffer will really rape the faith right out of you. I’m not wanting to walk away or let go- I haven’t drawn up any divorce papers or anything. I’m just feel really really indifferent- towards the creator of the Universe.

Isn’t that strange? Indifferent- “creator of the universe”-yet I know and fully believe.

The truth is I really did “just want to play tennis.” I really believed that one day I’d have a few kids, and after I put in the hard baby/toddler/preschool stuff they’d go off to school and things would get way easier.

I could explore my interests again. Throw awesome printed invitation parties (because I’d be rich of course). Learn to flower arrange- so I could have something unique each week decorating that grand foyer of mine.

I’d volunteer, walk my dog, garden, bake and make amazing dinners.

And yes, I’d play really good tennis and have lunch afterwards with all my amazing friends- and we’d have deep amazing friendships and our husbands would love each other and we’d all take turns vacationing at each other’s beach houses.  I kid you not, this is what I had in mind.

Yesterday- I learned that I will be spending the next year in a house with my daughter- 7 days a week 24 hours a day. She won’t be going to school and breaks will be paid for and rare.

I love my daughter- crazy love, deep love, normal love that a mother has for her child. But, I had no plans of spending every day with her at age 9. And what’s more- she is incredibly difficult to be around. Difficult because she’s sick and difficult because the well her is not difficult at all and that makes it all the more strange and painful and guilty and mightmareish.

I have no idea what the year will hold. I have no idea how she will respond to the treatment she just received and will receive again in two weeks.

Here’s what I know:

It makes some kids worse for months before they slowly start to improve and then are cured-maybe– I really have to push this one out of my mind.

It means that for 2-3 months I’ll have to be a total nutty germ freak because she’ll have no immune system.

It means she loses another precious year of her childhood

It means suffering

Another nail in the coffin of any shred of belief she has left that life is good

It means another year our younger daughter has to have a sick sister who dominates life

It means no solid future planning (which I could deal with if it was not year 4 of that…I’m not really a planner but …)

I have no idea if this will work

I have no idea what to do if it doesn’t

 

I also know I gotta lay this down- surrender- I know I do I know I know

I have to live, we have to live, she has to live

But how??

I’m trying to figure it out- and that’s what I’m asking God right now- How do I let this go while living it?

For now I’m stocking up on duct tape and hoping for no more broken glass.

Leave a Reply

Your email address will not be published. Required fields are marked *