Balance is a Myth

My daughter's Chiari 1 Malformation repair surgery went well (decompression and duraplasty).  The doctor didn't have to remove any of her brain.  Thank you to all who offered prayers and support in our behalf.

It took longer than expected because she has an extra thick skull.  (The doctor said it was about three times as thick as most, and if he'd had to remove any more he'd have had to get a new saw because he burned through the one he was using.)  He removed a piece of her skull.  He removed the back half of her first vertebrae and shaved off part of the second.  He opened up the dura (the covering of the brain) to make more room and patched it with a piece of her scalp.  She goes back next week to have the staples removed and make sure everything's healing well.

She's still quite medicated, so it's tough to tell if any of her symptoms are better.

Three long days in the hospital with her were exhausting.  I was sleep deprived when we got there and it only got worse.  I tried to take care of myself while taking care of her.  I ate some.  Slept some.  Neither enough.  Because she was my top priority.  She needed me there in order to feel safe.  She was scared.

Since we've come home it's been better.  She's slept more.  I've slept more.  I'm keeping her on a strict medication schedule to stay ahead of the pain -- absolutely no waiting until it hurts.  As soon as she can take more meds, I give them to her.  It won't be this way for long.  I will start to stretch it out when I think she's ready.  But right now she needs to be able to relax a little and sleep so she can heal.

I am sleeping on a mattress on the floor of her bedroom at night.  There was an oxygenation issue in the hospital that's got her a bit paranoid.  Having me there to make sure she's breathing lets her relax.  It's a small price to pay.

While I was at the hospital with her those three days, my oldest daughter played mom at home.  She got people up and off to school.  She kept track of people.  She ran things.  All while finishing up classes and studying for finals.  She was a life saver for me and now has a better understanding of how hard it is to be a mom -- I understand there were some tears.  (Don't ask where my husband was.  We had a fight that started while my daughter was in surgery and continued throughout the day, both of us sleep deprived and stressed.  He was not in a good place those three days.)

Since we've been home, my daughter's ex-boyfriend-but-still-best-friend has spent most of the daytime sitting with her in her room, running errands for her and/or me, and giving me a chance to rest.  This would have been incredibly difficult without him.

And I have had to give up a lot of things.  I've let a lot of things slide.

All of that brings us to my point.  Balance is a myth.  Life isn't about making everything we want fit into a tiny space of time and energy.  Life is about deciding what's most important and choosing that.  Life is about letting go of things that don't matter to focus on things that do.

I wanted to be at my oldest daughter's concert, but I was needed at my other daughter's bedside.  I wanted to go to a discussion on literature of world religions, but needed to take care of myself.

There was a time in my life when I would have demanded it of myself to keep doing all I was already doing and find a way to squeeze this in there, too.  Luckily, I'm wiser than that now.  I know that's not healthy and not something to strive for or admire.

My priorities right now are my daughter, my health, and the other people in my life.  The house will wait.  There will be other fun opportunities.  And anything that really needs to get done can be farmed out.

Life is about seasons.  We do one thing for a while, at the proper season.  As the seasons change, we need to be willing to change with them.  We need to find the beauty in each season and not feel like a failure because we leave the other season behind.  We need to be willing to let a season go when it's time to move on.

This is my season to take care of my daughter and help her heal.  And it's the perfect season for me at just this moment.

My Daughter's Brain Surgery

It's a strange thing to be sitting in a waiting room, kind of bored, knowing my daughter is just down the hall with someone cutting open her skull and possibly removing parts of her brain. 

This man that we met once.  Talked to for fifteen minutes.  Holds my daughter's life quite literally in his hands.

The last three weeks, since her diagnosis, have seemed like a year.  It's taken forever.  Mostly because all we had was a diagnosis, no information specific to her case.  Then, last Thursday we finally met with the neurosurgeon.  We learned what her situation was.  We learned his plans.  We scheduled the surgery for the soonest possible date.  The last four days have flown by and dragged.  You wouldn't think they could do both, but they did.

And now we are here.

Pre-op was a bit tense.  Knowing it was just around the corner.  Sam was quite anxious, which added to my anxiety.  Then pre-op was done and we waited.  It was about an hour and a half of waiting after pre-op was done.  We got bored again. 

Then someone walked in, told her it was time to go, and the fear returned.

And they took my baby away.  Nineteen or not, she's still my baby.

I'm actually ridiculously calm.  Except for this underlying anxiety that I feel every time my children leave my presence.  Just kind of magnified.

I believe the surgeon is skilled and knows what he's doing.  I believe things will go well.  But there's still that part of me that holds a constant prayer in my heart that she will come back to me.

I wonder if that will ever go away or if I will just always have that small alert in my heart.  No matter how old they get, I wonder if I will always have that sense that they are vulnerable to this big, bad world and I need to protect them.

I can't imagine doing this without faith.  While I believe everything will go well and she will heal and finally feel better, there is a tiny chance that things could go not well.  That she could have permanent damage of some kind, have a successful surgery but feel no relief, or even die.  All of those things are possible.  But I am still much more calm than not because of my faith. 

I know that I am not the only one worried about her and watching out for her.  I know that she was His child first.  I know that no matter what happens, she will be okay.  We will be okay.  There is great comfort in knowing that.

But it doesn't mean I'm ready to give her up yet.

I imagine she'll come out and we'll have a rough go for a few days with a consistently upward curve of healing.  I imagine that within a few months, the only evidence of today will be the six-inch scar up the back of her neck and skull.  I imagine she'll be up and running, back to usual, before we think she should.

But right now a doctor has her head splayed open and is working on her brain.  And we wait.  And it's scary.

On Being Powerless

We all want to be in control.  Sometimes we feel like we're succeeding, like we've got a handle on life and things are going the way we planned.

And then something comes out of the blue and smacks us in the head with a two by four and walks away giggling, knowing it has power over us.  We sit.  Dazed.  Trying to figure out what's going on.  Trying to get our bearings.  Trying to figure out what our next step should be.

I'm still dazed.

Two days ago our family received some scary medical information, an initial diagnosis.  My 19-year old daughter has a Chiari malformation in her skull which is putting pressure on her brain.  It was a whirlwind day of exam, MRI, diagnosis.  Now we are in a holding pattern, waiting to see a neurosurgeon and make a plan.

It's left me feeling very powerless.  Powerless against the insurance company that won't pay for the specialist our doctor wants us to see but insists on sending us to a different one.  Powerless against the schedule of the specialist that leaves us waiting for days before we can even schedule to meet to get any more answers.  Powerless against the emotions it's churning up in my family.  And powerless to change what is.

It's been a rough couple of days.  And the rough times aren't over.  They are probably just beginning.  I've spent a lot of time trying to figure out what I should do, how I can deal with it, how I feel.  I'm riding tumultuous waves of okay and freaked out.

But, for just this minute, I'm done focusing on what I'm powerless against.  Right this minute I want to focus on the power I still have.  I still have the power to decide how I'm going to face this.  And that matters.

I'm not going to put my life on hold.  I'm not going to drop all other responsibilities.  I'm not going to obsess.  I'm going to do the best I can to live my life while waiting.

And I'm going to practice what I preach and be kind to myself. 

When others tell me about difficult things they're going through, especially transitions, I ask them to be kind to themselves.  I ask them to allow themselves to feel what they need to feel and not judge themselves for it.  I ask them to give themselves time to make decisions, to not force them just because someone else wants an immediate answer.  I ask them to practice good self-care.  I ask them to be as kind to themselves as they would to a dear friend if they were the ones going through this.

So this is my game plan.  I'm going to live my life as normally as I can.  I am going to drop everything and cry when I need to.  Then I'm going to pick it back up again.  I am going to take care of myself.  I am going to respect the feelings of my family members but not feel accountable to fix those feelings.  I am not going to project all the possibilities at this point.  I'm going to wait for further information.  If it's going to get ugly in the future, I'm going to let that be in the future.  I'm not going to let the possibility of future stress ruin now.

We're going to get through this.  We're going to be okay.  But I'm not willing to wait.  I'm not going to sit and wallow in the toxic stew of powerlessness.  I'm choosing to be okay now.