Thursday, February 9, 2017

casting and such.

At the end of October, we took a few day family trip to Brown County state park to play at the indoor water park, and enjoy the outdoors a little.  It was our last water hurrah before tiny got casted.  I have wanted to thank the many people who helped make it possible for us to go.  We were thankful for this time together.  It turns out, it had been a long time since we had gotten to just spend time in nature as a family of five.  As little has gotten bigger, and still been unable to walk, we've stepped back from some of the things we love doing, like hiking, to find activities that work better for all of us.  It was so refreshing to get outside, and even have areas that we could use her wheelchair.  The pool was zero entry so both her and tiny could easily play independently.  There aren't often places we go as a family where it feels like everyone enjoys the activities, but this was a wonderful rare exception.
Of course, we came home, and tiny got casted a few days later.  Shilo got sick, and we finally found out that she had a parasite (where or how she got it is unclear).  Tiny got sick, and was tested for diabetes.  He did not have it, but his blood work was really wonky so we ended up being referred to endocrinology.  They did more blood work.  More wonkiness.  We go this coming week for a more precise test-and hopefully some answers.  Big had her follow up MRI and oncology appointment.  Her tumor is stable, and we get to wait six months before we have to do it again.  Little had an abnormal spinal MRI that we met with neurosurgery about, and we have two more test before we decide what to do with it from here.   And, little continues to have severe bowel issues despite the fact that all test point to the parasite being gone.  So, as always things have remained exciting in our home. 

But, the pictures from our trip are a great way of ending with the fact that our lives, despite the chaos of medical, are often a lot more like others, than not.  Thanks again to all those who helped us in many capacities to get to enjoy our few days away!
beautiful view.

water play

enjoying the ball

her snake, killer.

if you're happy and you know it.

teaching her the art of selfies.
an adventure while the littles napped.

one of my favorite moments from the trip.

swimming in the big pool.



more selfies.

grumpy face. 

family selfie.

the last bath before his cast. 

first cast, and elephant with a  cast.

this is their personalities.
on the way home, he fell asleep eating m&m's.  can you spot it?
second cast, done.  elephant as well.

Tuesday, December 20, 2016


Advent.  The season of looking forward.  Expectation.  Excitement.  Anticipation. Celebrating.

No matter where I am in life, it always feels like there is this relentless hope that accompanies advent.  Remembering that Christ came like He said He would.  Hoping for His return.  The whisper of reconciliation that makes people believe that things might just be set right at any moment.

The next few weeks are calm for us.  The appointments are done for the year.  The presents are (mostly) bought.  School is on break.  We get to sleep later.  Tiny turns two. We see family.
But, January is working to overshadow.  It looms, just in the distance, reminding me of all the lingering questions.  The neuro-surgeon consult for Shilo.  The endocrinology consult for Asher.  The MRI and oncologist appointment for Abigail.  And, once that's over, we start February with Asher's second Mehta casting. 

For the past year, medical stuff has been relentless.  It's been a tag team of appointments, and new diagnoses, surgeries, and big questions. It's been a year of unexplained chronic bowel issues for one child, and new bowel issues for another.  Literally, my days are filled with a lot of shit.  And, despite the extra stuff, the regular things didn't show mercy.  We still had therapies.  And, homework.  Dishes. Laundry.  My kids still felt like they needed meals and snacks.  Books read, and snuggles. 

My whole being said enough months ago, and yet, there was more.  And, I didn't even realize how far I had gone into the darkness, until I sat in my house one Friday, desperately planning a way out.  So I nervously, and bravely, sat in my doctor's office the following Monday.  She, being the incredible doctor, and person that she is, was compassionate and empathetic.  And, we talked over medicine.

Last night, big and I went shopping together for a few things.  We spent the whole time laughing really hard.  People staring at us sort of laughter.  It had been a long time since I had laughed like that.  It was beautiful.  And, freeing.  It reminded me of who I was before.  I'm not sure when before was.  A specific day.  Or week.  A month.  An event.  But, there was a before.  One where I wasn't enveloped in darkness.  I'd forgotten that it existed because it had gone away so slowly, and so fast.  Like time seems to do.

So, as January tries hard to surround me, as future works to draw me back into a dark place, I finally have help.  I have an advent in my life.  It brings with it hope and the belief that things may just all be okay at any moment. 

Wednesday, October 5, 2016


Words are kind of my thing.  I have always loved reading them.  I've always been sensitive to harsh ones.  And, I have always clung to the ones that I find beautiful, uplifting, and kind.  There's nothing that lets me know I'm loved like words.  These are all the words that are sitting next to my bed right now that people wrote about me.  Some of them likely don't even know I've hung onto them and read them over and over.

One of the many things I have anxiety about is going places with my children without my husband.  It isn't because of the utter chaos it is going to bring.  That's just how our family does life.  It's because of all the words, the fear of words, and the knowledge that strangers are going to say things to us.  Most of those things are innocuous, although sometimes slightly annoying.  Like when I'm carrying both of the younger children into a store because I can't push Shilo's wheelchair and a cart at the same time and someone says, 'wow, you have your hands full.'  Yes, I literally have my hands full.  Thanks. 
But, often, they are not.  I have been called a whore multiple times because I have children of different races.  People ask things about adoption that aren't appropriate such as, 'why didn't her mom want her?'  Or, people say things like, 'What's wrong with her?' about Shilo.  Or the time a man tried to preach the gospel to me so he could invite me and my colored child to his Bible study for colored people.  He really liked colored people, but didn't tolerate the loudness and foul language they use. Or even seeing someone I know from the past who says, 'you have ANOTHER kid?'  Or, the woman who explained over and over to me one time, 'I just wouldn't be able to love somebody else's kid.  Don't worry, you'll have a kid of your own someday.'   
As a result, before I go out into public places by myself with my kids, I have to talk myself through what to do if others use words that are hurtful.  It might sound silly, but the times I've been affronted, I have been caught off guard, and didn't respond.  So I go through scenarios.  Words.  Responses.  I edit and re-edit them so my children will hear and see that it is okay to not allow people to treat us wrongly, and do it with grace.  I take deep breaths.
When I'm out, I'm so caught up with caring for my kids, 'kind and gentle hands' 'I need you to leave the groceries in the cart' 'you need to tell Shilo no if you don't like her touching you' 'stop chewing on (grossest thing you could ever find) it's not food.'   And, I'm never ready for the words.  Never. 
As much as I want to forget them, as I want to give people the benefit of the doubt, they stick with me.  They embed in my heart. They exacerbate my anxiety.  So much so that I recently realized that I've just stopped going places very often.  It's too much.  It's physically hard to do things with a very active toddler and a child in a wheelchair.  The lifting, carrying, getting the chair in and out, it wears a girl out.  But, not so much so that it might keep me from doing things.
The words though, they have done it.  They have made me not want to go new places, or do new things. They have me avoiding storytimes because of a specific person, and one of the library branches because of someone who works there. That's not okay.  Please think before you judge.  And, if by some chance you make a snap judgment, as we're all prone to do, keep it in your head.  Leave it there.  Feel free to go on believing it if you want.  But, whatever you do, do not say it out loud to the person you're judging. It's your issue.  Not theirs.  I promise you, from experience, they have enough of their own.

Sunday, October 2, 2016

My drug of choice.

I took this self vow that I would live more honestly.  If someone said, 'How are you' I would respond honestly.  Most days that means, 'I'm struggling.'  I would tell people I have anxiety.  I would show people our home, even if it's messy.  I don't want it to be for pity.  It's not pitiful.  It's life, and sometimes it's really hard.
This new habit hasn't been without a lot of heartbreak.  Lots of people love the realness.  They appreciate hearing that other people are struggling.  But, some people see the opening of vulnerability as an easy in.  It's not always intentional.  But, when I share my struggles and someone responds with how it's a spiritual deficit, a parenting deficit, a spousal deficit, and just about every other area of my life, it makes one want to retreat.  Don't get me wrong.  I am deficient in all those areas.  I could make you a whole freaking list of where I fall short.  But, my hope in being real isn't to shine light on my sucking at things.  It's to shine light on how everyone feels not good enough.  And, if we can stand together and say, 'yeah, me too' our shortcomings are much less scary.  There's hope that maybe we aren't as big of failures as we sometimes feel.

This week we found out that Asher's scoliosis has gotten worse and we will begin casting to try to straighten his compensatory curve, and prevent his congenital curve from worsening as quickly to prolong surgery.  We found out that he does indeed have a bar opposite his hemi vertebra guaranteeing both that the congenital curve will get worse, and that he will need surgery to correct it at some point.  I LOVE having a definitive.  I hate what it is.
When he is casted he can not take a bath, or be in water.  I'm glad we're starting it going into the winter.  But, the boy loves baths.  The two weeks prior to casting are fall break so we're planning a trip to an indoor water park for a few days (the mid-west in October isn't conducive to outdoor water play).  We like to try to do things to balance and redeem the hard. 

I've been in avoidance mode since the appointment.  Constantly checking facebook (despite the fact that I'm trying to take a break from it), e-mail, reading articles, anything I could find to fill my mind with fluffy things.  I'm not interested in the countdown in my head.
So this evening, as I was making dinner, I wasn't that surprised to find myself fighting tears.  I know where it ends every time.  I don't know why I don't just allow myself to process it, work through it, and move forward.  Everyone in my home would benefit from me changing this habit.  I don't get much done.  I don't spend much time actually focused on my kids.  I just escape.  Distraction is my drug of choice.  It numbs things.  It's free.  Nobody else knows. 

 It, like other drugs, is temporary.  It doesn't actually change reality.  Eventually, I have to lay down in my bed, and all the things are still there, flooding my head.  Vying for my attention.  Preventing me from the escape I'm hoping for.  Just closing my eyes for some hours.  So I turn on mindless television, and fall asleep to that. 
It works for a few days.  But, at some point I'm doing something that demands me to not have a screen in front of me.  And, I lose it.  Fall apart.  I desperately clamor for a way to go back to numb.  But, it's too late.  So I wade in.  It's deep.  Thick.  Hard to make it through.  And, it's all just compounded with all the other shit that was already there.  Perhaps some day I'll be strong enough to just jump in from the beginning.  I'll join all the other brave people getting dirty.  I'm there today.  The people with me are much kinder than those voices that tell me I can escape things.  They remind me that I'm strong, and brave, and I can do hard things.  And, I can be real about how much doing hard things sucks sometimes.  This is one of those times.  

Friday, September 23, 2016


It's hard to describe where I am right now.  On a Monday, my son had surgery on his spinal cord.  Hours later, I stood in an elevator reading the MRI report that said my daughter had an optic glioma, and two weeks to the day after that, Shilo got her wheelchair.

Six weeks and a month out, the only thing that truly affects us in our day to day is the wheelchair.  And, Shilo is doing amazingly with it.  But, something about these three events, and how they all happened together, cracked things deep inside of me.

You know how Facebook has that, 'on this day' feature? Well, it's the thing that best shows the progression of my heartache.  The early post, they're all sappy and sweet. Everything seemed like a big deal.  I posted things like, 'going to see the doctor with our bug tomorrow, feeling so nervous. Prayers are appreciated.'
But, a few years later, they're filled with the pain I lived through. Maybe others wouldn't see it. But, it's when I put on the scales.  I grabbed my dragon suit, and wore it proudly. It helped protect me from the pain of hard things. And, each time we were faced with some other horrible diagnoses, or a hospital stay, or a birth that went horribly wrong, on went that next layer.  The pain was too much, and I was determined to find a way to avoid it.

But, then the crack.  And, I watched myself become undone.  It was like the scene in 'The Voyage of the Dawn Treader' where Aslan turns Eustace from a dragon back into a boy,

But the lion told me I must undress first. . . . 
I was just going to say that I couldn’t undress because I hadn’t any clothes on when I suddenly thought that dragons are snaky sort of things and snakes can cast their skins.  Oh, of course, thought I, that’s what the lion means.  So I started scratching myself and my scales began coming off all over the place. And then I scratched a little deeper and, instead of just scales coming off here and there, my whole skin started peeling off beautifully, like it does after an illness, or as if I was a banana. In a minute or two I just stepped out of it. I could see it lying there beside me, looking rather nasty. It was a most lovely feeling. So I started to go down into the well for my bathe.
But just as I was going to put my feet into the water I looked down and saw that they were all hard and rough and wrinkled and scaly just as they had been before. Oh, that’s all right, said I, it only means I had another smaller suit on underneath the first one, and I’ll have to get out of it too. So I scratched and tore again and this under skin peeled off beautifully and out I stepped and left it lying beside the other one and went down to the well for my bathe.
Well, exactly the same thing happened again. And I thought to myself, oh dear, how ever many skins have I got to take off? For I was longing to bathe my leg. So I scratched away for the third time and got off a third skin, just like the two others, and stepped out of it. But as soon as I looked at myself in the water I knew it had been no good. . . .
“Then the lion said — but I don’t know if it spoke — You will have to let me undress you. I was afraid of his claws, I can tell you, but I was pretty nearly desperate now. So I just lay flat down on my back to let him do it.
“The very first tear he made was so deep that I thought it had gone right into my heart. And when he began pulling the skin off, it hurt worse than anything I’ve ever felt. The only thing that made me able to bear it was jut the pleasure of feeling the stuff peel off.  You know — if you’ve ever picked the scab of a sore place.  It hurts like billy-oh but it is such fun to see it coming away.”
“I know exactly what you mean,” said Edmund.
“Well, he peeled the beastly stuff right off – just as I thought I’d done it myself the other three times, only they hadn’t hurt – and there it was lying on the grass, only ever so much thicker, and darker, and more knobbly-looking than the others had been. And there was I smooth and soft as a peeled switch and smaller than I had been. Then he caught hold of me – I didn’t like that much for I was very tender underneath now that I’d no skin on — and threw me into the water. It smarted like anything but only for a moment. After that it became perfectly delicious and as soon as I started swimming and splashing I found that all the pain had gone from my arm. And then I saw why. I’d turned into a boy again. . . .”

It's one of my favorite scenes from a book. This image of God helping us to shed those ugly hard parts of ourselves. It's painful. And, raw. But, in the end, Eustace goes from being a selfish, lying, little boy, to someone others enjoy.

Right now I feel like I'm in the raw stage. Scales were ripped off as I was bombarded with one hard thing after another.  And, I'm trying to navigate things again without my protection.  All of my emotions, both good and bad are finally being felt.  And, I love it and hate it.

Something I've realized in this is that I have to write.  It's like breathing for me.  It's my way of  trying to bring beauty to our hard.  It's what I love. So I hope to be here more. And, I'll try not to let fear prevent me from hitting the publish button.

Tuesday, August 23, 2016

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. 

Saturday, August 6, 2016

Big Battles.

 'Sometimes, real superheroes live in the hearts of small children fighting big battles.'

Dearest littles,

   Here are a few things that I want you to know as you face the battles that lie ahead.  First, and most importantly, superheroes never have to do things alone.  Their Mamas and Papas are always right there with them.  And, it's true, there are moments when we must hand you over to someone else.  Someone who knows more about brains and spinal cords, hearts, spines, and so much more.  But, those people are ones we have asked to join you in your journeys to fight your big battles.  They are so very special.  Without them, we would not have the tools and knowledge we need to help when they're not around.  Some of them give us the amazing things you put in your body each day so that you can focus on fighting big battles.  Some of them have to hurt you to make you stronger.  Those are the hardest for us, too.  So it's okay to not understand that and feel so very angry at them.  I think, someday, you will understand it better.

Sometimes, superheroes flash their toothless grins when they're in the strong arms of those who help them fly. Those moments are so very special. They are confident enough in themselves to know that it's okay to let someone else hold you up when you're unable to fly alone.  (In case you're unsure, none of us can fly alone.)  And, you can let other people see the person behind the magic, it doesn't have to be done with hidden wires.  Living with the lie that we can do it without others, or trying to hide the man controlling the wires only kills the superhero.  It gets swallowed by the fear of being found out.  So my three littles, always lean into those arms, spread your arms, and breathe in deep the air that rushes past you as you fly.  We will do our best to have our arms ready to help whenever we can.  You are some of the very best fliers we know!

It's okay to be unsure.  Being a superhero can be both exhilarating and terrifying.  The battles you have fought already prepare you for the ones that lie ahead.  But, they also leave you with the scars and the dreaded knowledge of what those future things can look like.  And, sometimes, the battle is a brand new one.  The thing you face may be terrifying.  Feel free to wear your uncertain face during those times.  You are not required to smile through it all.  Being brave means knowing your limits.  It means facing things that terrify you. We will be there explaining those terrifying things the best that we can.  And, we will be cheering so damn loud as you face them, even if you face them through a screaming, kicking, crying fit.  Because small children and adults are allowed to be terrified.  This life can be quite terrifying at times.  

It's so very okay to not fly some days.  It's okay to be the kind of superhero that clings to your Papa and Mama.  It's okay to suck your thumb, snuggle lambie, carry your blanket around, and watch sesame street to take your mind off of things.  We will hold you so tight during those times.  Superpowers often come from comfort objects.  They give us the power to face the world again, always remembering they will be there when we need them.  There's no shame in getting your superpowers recharged.  Being a superhero is exhausting.  Put your cape away for a while, and just go back to your regular everyday job of being a kid.  You're pretty amazing at that, too!

The truth is, though, that we have no idea what we're doing in these battles.  That when we watch you all face hard things, our hearts ache in such very big ways.  We are trying to fly, but it's often awkward.  We have our unsure faces on.  And, we most certainly lean into our Papa, and comfort objects.  We want things to be hard enough for you that you can face the world with confidence.  But, for whatever reason, our family seems to have gotten an extra dose of hard things.  The weeks ahead promise to be filled with some big battles for all of you.  No matter how tired we are, how very little we feel like we have left to give, we promise to be there with you through those battles. 

Always remember, we can do hard things.  You don't have to superhero alone.  Really, superheroes lie in the hearts of small children facing big battles with the help, love, and support of the people around them.  We just leave that last part off because we are so very proud of how you all face your big battles.

With the deepest of love,

Mama and Papa