Posing.

These are a few pictures from our vacation that I love.  Playing in the sand. Kite flying.  Wearing her puddle jumper and goggles despite the fact that she never went anywhere deep enough to need either in the ocean.  They're real.  They make me smile as I remember how fun it was.  How relaxing it felt.

While we were there one night, a family arrived at the beach.  All of them were wearing nice clothes. The mother walked into the water, and started posing, as the father took pictures with his phone, while giving instructions of how to turn to get her hair to flow more, and her chin in just the right position. I continued to play with Abigail while taking in the family.  They did rehearsed videos of walking and holding hands, acting surprised when a shell was given, and numerous takes of each person to get just the right angle and picture.  All on cell phones-so they weren't professional pictures.  I have no idea what their reason was.  Nor, am I saying that there may not have been a legitimate reason to do this.  It just struck me as intriguing as I watched all of the other families capturing pictures as their children ran into the ocean with boogie boards, built sand castles, and looked for shells and creatures on the beach.  I couldn't figure out why they would need to work so hard to capture perfect pictures when the beach is an amazing way to make perfect memories.  The whole thing has stuck with me.

The past weeks have been filled with appointments.  Mostly for Tiny.  Although, Big's MRI and oncology follow up for her glioma was in there as well.  Overall the appointments weren't horrible.  But, we've been bombarded with information.  Some suspected.  Some a complete surprise.  And, as we officially started the process of genetic testing for Tiny today, I recalled all of the times people have said, 'well, he looks normal.' 
My thoughts skipped to the church we belong to.  It's full of people who are a hot mess (spoiler alert, all churches are).  But, they're all so willing to share their mess.  It's a beautiful image of what the body of Christ is to be.  So many places, everyone looks the same.  They talk the same.  They pepper their language with how great God is.  All the time. 
But, the body isn't made up of parts that have it all together.  It's made up of my daughter with an extra chromosome who uses a wheelchair.  It's made of people who have been addicted.  People who have had abortions.  People who hate others.  People who need glasses to see clearly.  When all those parts connect, and work together, it's just a big jumble of imperfect.  There are hard conversations about forgetting to make things accessible for people who use wheelchairs.  There are sometimes hurtful things said to one another.  Everyone shares in the mess, the same way our physical bodies sometimes have parts that don't work well with others. 
There are other places like ours.  I'm sure of it.  There are also lots of places that look like the family at the beach.  The ones who say, 'well he looks normal.'  As if saying, 'I know we are all imperfect.  But, at least we can pass for having it all together.'  It's a badge.  Only post the great pictures.  The uplifting stories.  If you share something hard in your life, make sure to follow it with, 'but, I know that God is good.'

But, we want so badly to look normal.  Churches.  Families.  Individuals.  We pose.  We take the same picture adjusting the angle over and over until we have the ones to post that looks just right.

The truth, we're all broken.  When we go to the beach, we get sand in our bathing suits.  And, if you live here for long, you are going to experience hard things that make you question things about faith, and God, and those around you.  You're going to realize that the people who try the hardest to look 'normal' are just as broken as the one who is noticeably a mess.

We're a mess.  Our beach pictures.  Our home.  Our children's chromosomes.  Our faith.  And, if sharing our journey, honestly, helps one other person be brave, it's worth it.  I have found it's much more fun to just enjoy the beach than to dress up and pose.  Sure, there's more sand, and possible sunburn.  But, the memories are pretty amazing.
 

About those battles.

Our fears of the symptoms we were seeing from Abigail were confirmed a week ago today.  She has an optic glioma on her left optic nerve (a tumor common in NF).  It is causing neurological symptoms and has caused her vision to become worse.

The words to describe how I feel aren't there.  It seems like it can't actually be real.  But, I wake up, and there she is with her glasses.  And, questions.  Looking to me for security in something that she isn't sure about.

As we try to process all of it, Jason asked the perfect question, 'what is your biggest fear with it?'  I thought for a few minutes.  And, the thought has continued to go through my mind since then.

My fear is that this steals her innocence.  She no longer worries only about the things seven year olds worry about.  She also worries about losing all of her vision in one eye.  And, chemotherapy.  She wants to know if she'll always have to wear glasses, now. Can the tumor just go away on it's own?  What will her friends think if she tells them?  Will it hurt?  Will they do surgery?

And, as I answer those questions, I find myself completely unable to say the words 'we could pray' because my bigger fear is that it will rob her of her childlike faith.  What if I say, 'we could pray that the tumor goes away on it's own' and it doesn't.  What does she internalize about God?  How do I tell her that, from my experience, prayer doesn't seem to change much externally? 

I realize as I think these things, that they're really me, projecting those things that have shaken my own faith, onto my daughter.  If she asks those big questions, I don't have any answers right now.  I just have bigger questions.  Ones that scare me.  Ones that I've been wrestling with for quite some time.  Ones, that I fear, I will wrestle with always, this side of heaven.

I want words, to wrap up neatly, all the hard things in this world, for my children.  I want to be able to give them concrete reasons that bad things happen.  I want to point to where God is in all of them.  I have none of those things.  They don't exist.  And, when you're on the outside, looking on other people experiencing hard things, it's easy to say, 'well, sometimes hard things happen, and we just don't know why.'  But, when you're staring into the big brown eyes of you daughter, and telling her she has a brain tumor, that doesn't cut it.  Nothing does.  But, you promise to go into battle with her.  To answer questions.  To hold her when she's scared.  And, you say the things you know are true, even when they don't feel even a little bit true.  And, you pray that somehow, her little heart is protected for just a little while longer. 

theives.

there are some lines from a song i love that ring true, today.

'there's the presence of thieves, who only want, to rob you blind.
they steal away, innocence and peace...'

years ago, we sat in a doctor's office.  i had worried myself into feeling like we should see a geneticist.  what i had assumed was the issue, was not.  but, in some horrible way my fears were validated.  there was something more going on.  and so was the diagnoses of NF.  and the year that followed, i regret.  i regret the amount of time i focused on limitations and what if's instead of my daughter.  i regret that i became so obsessed with checking for tumors that i could no longer be the one who bathed my child.  i missed out on joy.  innocence. peace.  it was stolen from me when i focused on the thief.

then, maybe consciously, maybe not, i jumped in a second time already knowing things so that i could avoid shock.  nobody was going to get me with a 'hey, by the way, she's got this going on.'  but, we still ended up surprised.  i handled it better though.  and i didn't try to will away the delays.  i just accepted them for what they were.  sure, i would love for my stubborn little to stand up and walk already, but i'm not anxious about it.

and, today, i am fighting those thieves again.  the words on their own seem small.  there's this small thing. and that small thing.  then this.  then that.  separately, they're no big deal.  then my head goes through the list, one after another.  my heart starts pounding.  my brain whispers over and over, 'there's something more. something bigger.'  but, i fight.  i fight with all i am.  'maybe. maybe there is something more.  but, i'll worry about that on the day we know.  today, i'm going to dance.  i'm going to read stories.  i'm going to laugh at his little tongue play.  i'm going to smile at how he is able to find tags on the inside of my shirt seem when he's nursing, or on toys, or even the stroller. i won't let you take from me that which i can't get back.'

it's hard.  when you've lived in a world full of fears coming true, the thief known exactly how to get to you. he'll take today from you any way he can. 
but, i will fight.  i will fight by not reading the list of milestones he should have met.  i will fight by not comparing him to other babies his age (or younger).  i will fight by celebrating what he is doing.  i will fight by presenting my fears to the Truth, over and over.  i'll let Truth deal with it.  Truth conquers the thief over and over.  and, in the end, It will win.

myself, when i am real.

a year ago I was starting to feel it.  the wounds were scarring over nicely, and the pain had diminished.  I could look at pictures of our past few years without crying.  I could pray.  that was a big one for me. the feeling that God had abandoned me in a hospital room for three months was fading.
but, everything backed up again with the birth of my son.  I've spent the months asking why, and knowing i'll likely never get an answer. the distance returned.  the trust diminished.  I can happily spit out the things people want to hear so they aren't uncomfortable, 'we are just so thankful that he's here and okay.'
and, it's true.  I am thankful.  but, i'm also angry.  and sad. and frustrated.  and I want more than anything to know God.  to feel Him.  to think He might be hearing me when I ask for things.  but, not just hearing me.  responding to me.  wanting to give me good things.  no more hard please.  I need a big long break from hard.
the past few weeks have been wrought with ugly parenting things with my big.  I never see them coming, and I have no idea if we are doing anything right when these things hit.  so tonight, I climbed up the ladder to her bed, and laid next to her.  I sang to her.  she sang to me.  she talked about things that seem so small from my adult world.  they're significant to her.  so I listened. 
then, she rolled over, sucked her thumb, and rubbed her lambie between her fingers.  I rubbed her back and silently thought.  or prayed.  or maybe those two things are one in the same.  I thought about how angry I am about hospital stays.  how I just keep cycling through the same things over and over.  and, maybe, she's angry about hospital stays too.  but, she's six.  and she doesn't know exactly how to say that.  so it looks different than it does for me.
I thought about how I can go to God over and over again, with my ugly thoughts, and my frustrations with Him, and how He doesn't ever seem to lose his temper.  He just lets me be angry.  and I pictured him rubbing my back as I fall asleep at the end of a day where I have spent the whole day stomping my feet and yelling at Him.  how He always seems to be there when I look back at things, right in the middle of it all, sustaining me.  and I told Him that I was trying.  trying to figure out who He was.  and that I would continue to seek, pursue, and run after Him, even on the days where i'm not sure how I feel about Him.  and I told Him that was really hard for me because I was afraid that He might abandon me.  get angry and decide i'm not worth the effort. or that He already had.
I eventually kissed big on the head and told her she was my favorite six year old in the whole world wide.  and I thanked her for singing to me.  the song she sang, was a kids song, by an artist named Justin Roberts.  lots of his stuff is really silly.  but, for some reason, she picked a song from one of his c.d.'s that is taken from old testament stories.  specifically, this song was taken from job. as if her lips were singing a soothing balm to a broken heart.

'where were you, when I laid the earth's foundation?
where were you, when I set the stars in space?
and they all sang together.
they all sang together up in space.
allelu, allelu, alleleuia.'

(if you want to hear the whole song, this is not him singing it, but it has the words with it)

someday, all things will be made right.  maybe, i'll even get to see the bigger plan that played into the last three years being hard.  but, for now, this doesn't wrap up neatly.  things are hard.  and, I don't want to act like it's all okay.  I struggle.  if you struggle too, that's okay.  if you're tired of hearing pat answers, and warding off those who blame you so that they can continue to believe that really hard things are from a lack of faith, come join me in.  it's hard here.  but, there are lots of really good days.  and laughter abounds because I use sarcasm to get through the hard ones.