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.
 

Advent

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. 

Dragons.

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.

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. 

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



Just, a little....

It's a phenomenon that most people probably don't fully understand.  But, I've heard it from lots of other parents.  I've heard it from spouses.  I've heard it from people themselves.  So, I know that lots of people experience it.

Doctor crushes. 

Now, let me start by saying, a doctor crush is in no way shape or form of a sexual nature.  If you are truly attracted to a doctor, that's not what I'm talking about here.  This is a whole different form of crushing. 

It can be a male or female.  Old. Young.  Attractive.  Or someone you find not so attractive.  But, whatever happened with that doctor led you to get fluttery feelings every time you see them, talk about them, or think about them. 

I have a few of them.  Doctors who have gone above and beyond. The fellow who literally made the life saving call to check Shilo's thyroid numbers when she got very sick at a few weeks old.  The developmental pediatrician who looked into issues with Abigail when she was really young and figured multiple things out. The doctor who delivered Asher.  The list goes on and on for me. 
And, a friend who's husband broke his neck felt this way about one of the doctors who cared for him.  A friend who had a mass removed from her abdomen, talks about feeling this way.  A parent who had a doctor step in and step up to prevent unnecessary interventions.  A parent who stepped up and stepped in to make certain a child got a surgery that some doctors thought wasn't needed.

I find myself thinking about these doctors.  Looking forward to the next appointment with them.  Wanting to bring them gifts, and invite them over for dinner.  I replay our conversations, and can't help but smile when I think of how they treated me, and my children. 
For a while, I thought it was just me.  And, that it was a little weird.  Until I admitted it.  Then, time after time, in conversation, someone else would describe something similar. 

So here's a public declaration for those of you who didn't know this was a thing.  And, here's a thank you to the doctors who are so great, that a phrase needed to be developed to describe the feelings they invoke.  You make the world of navigating medical stuff a little more enjoyable. 

 

Holding hope.

'that nothing grows on
 but time still goes on
 and through each life of misery
 everybody's got a hold on hope
 it's that last thing, that's holding me.'

some days, my hope lies strictly in heaven. the knowledge that all things will be made right gets me through.  everything here seems too hard. 
some days my hope lies closer to now.  that things might not always be this hard.  that here on earth, even, I might experience great things.
some days, I pour out my hopes in words to a God I still don't understand.  I step out and take that chance that maybe this will be the time the words I speak change something. but, at very least He's listening.

everyday, in our hallway, I walk by hope.  she used to sit in our kitchen window.  then on a shelf behind our couch before we moved.  and, in the midst of all the really hard things over the past years, at some point, her hand fell off.  I glued it back on.  then, she disappeared (with some help from little) behind the couch until we moved it out.  her hand was gone.  missing.  no more.
but, that other arm, still clung tightly to the balloon with the word hope.  it was held high above her head.  like she still believed there were things to hope for.  reasons to hope.

day after day, she stands there.  atop the shelf.  beneath her another tiny sign with the word hope.  the one I found when we were waiting for Abigail.  those three hard years.  and when I walk by them, I think of my friends who recently had miscarriages, who have lost littles, or who desperately want to be parents, and aren't yet.  and I stop, and plead on their behalves.  because that is hard. so very hard. and holding onto hope during that.  yeap. just all of it is hard.

and I look up at her, right above.  my sister gave her to me when we were waiting on Abigail.  but, for some reason, she doesn't remind me of the pain of waiting.  she reminds me that even with hospital stays and looming surgeries, seizures, scoliosis, and the future of tumors, that I can still hope.  I can hope in a God who will redeem all things.  i can hope that things won't always feel like i'm in a battle.  i can hope for peace.  a little girls to walk.  to find out all of the things going on with Asher.  that big's NF will continue to stay mild.  that when we walk through hard things, our marriage will remain strong.  we will learn over and over what it means to remain faithful.

in my brokenness, missing parts of me that I've tried to glue back on in hopes that other people might not notice, i'll continue to hold up my banner of hope. 

Public School.

Ten years ago, I laid on the floor of the spare room in our house.  Crying. Praying.  Begging.  All I wanted was to be a mother.  And we waited. And waited.  And we got the phone call. Appointments.  Ultrasounds.  Visits.  Phone calls.  A night in the hospital.  There she was.  Our big.  All round and beautiful.  We fell instantly for her.  Scooped her up and fought over who got to hold her. 
Then a diagnoses.  And hard stuff.  Handing her off to a surgeon to have the tumor removed in her leg.  Getting her back.  Watching her heal.  Rejoicing with a clear follow up.  Holding my breath with each MRI that it will be the one that gives us different news.
Becoming a big sister.  Then again.  Hospital stays for them.  And more hard stuff.
All this was filled in with books, parks, story times, friends, family, laughter, frustration, parenting failures, teaching, learning, television, bike riding, fevers, hugs, cooking, cleaning, eye rolling, life.

Seven years, and four months.  This child has been part of my every day.  Tomorrow, that changes.  I'm so excited for her.  For us. And sad.  How I will miss that child.  She's a smaller version of my personality.  Eye rolls and all.  She frustrates me like nobody else can.  And she reminds me each day of getting to become a mother.  Of my failures and my successes as a parent.
Here's to sending her out on a new adventure.

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.

choices.

parenting is hard.  knowing what is best is hard.  push backs from the world around, the experts, the blogs, the strangers who comment, they are hard.  we do our best to choose what works for our children.  we parent Abigail and Shilo differently.  they are two different beings. 
these past few weeks I have been confronted by outsiders with the questions.  the why homeschool for Abigail?  a professional telling us we are 'limiting' Shilo by choosing not to push speech therapy and oral communication on her.  I stood my ground. 
and then I went through my days watching my girls.  wondering.  did we make the right choices?  are we doing anything well for these two little that we are trying to parent, and raise, and love to pieces?  are we being selfish in our choices?  are we limiting them?
and like the amazing little beings they are, our girls show us, and remind us why we have chosen the what we have, and why it is right.  for now.  getting to send Abigail out into the snow this morning, before we started school work, all bundled up, and full of light and laughter reminded me how great it is that she still gets to spend so much time playing.  we can get all of our school work done, and she can have lots of time to run, and play and be six.  and that is a beautiful thing for her.  and for me. 

almost ready to play.

and shilo.  and language.  and limits.  oh, if they could only see what we see.  a little girl who crawls over and asks for music, and then does her best to fingerspell, 'lecrae.'   three.  my three year old is trying to spell.  and then she tells me, amidst wiping banana in her hair that the banana she is eating, is a fruit.  and indeed, it is.  and i'm blown away that a little girl who can't speak many words, can communicate things to me that I did not know she even had in her little brain.  as if those reminders weren't big enough, weren't sure enough for us to know that we made a choice that took the limitations of speech away, and left her with language, we find her signing, in her sleep.  yes, people who use sign language as their first language do indeed talk in their sleep, with their hands.  and, it had never occurred to me.  but, the beauty and greatness of it left Jason and I laughing and full of joy.
parenting is full of choices.  there are some absolutes.  there are things that are never okay, and things that always are.  and most of us are limping our way along trying to figure out if we are doing, or saying anything right.  we're full of guilt, pain, and shame from the days we have been less than stellar in the parenting department.  we put the pictures out there for the whole world of the things we are doing well.  and, we watch those around us trying to measure up as better or worse. 
when my parenting and my decisions are called into question I quickly become defensive and snarky.  you see, most of the things i'm doing with, for, about, my children, those were things we decided with deep love for the ones who we were deciding about.  questioning those things feels a lot like questioning whether my love for them is.  and it is.  so i'll do my best to assume that your choices come from a deep well of love, the exact same place mine do. 

...as long as the baby is healthy.

anyone who has ever been pregnant has had this conversation:
'do you know what you are having?'
'not yet?'
'do you want a boy or a girl?'
'it doesn't matter to me.'
'as long as it's healthy....'

the last line actually makes me cringe.  now, of course I don't want there to be something that causes my child to be unhealthy.  but, when I hear 'as long as it's healthy' it feels a little bit like I would accept either gender, but not if they had any sort of disorder, or birth defect, or whatever any of the other millions of things are that can go wrong in pregnancy.
in our house, we will be thankful that we have the opportunity to parent another child.  if it's a boy, well hooray for a whole new adventure.  if it's a girl, *sigh of relief* I already feel equipped to navigate this boat (plus I have lots of clothes).  if the baby is anything less than 100% healthy, we will be just as thankful for his or her life.
I know that when people say this, they mean well.  they are not being rude.  I'm not angry at them.  but, honestly, it still makes me feel like my other two girls are seen as less desirable.  too many of my friends have buried their children.  some of them gave birth to children who were born sleeping.  some of them only got to spend minutes or hours with their children.   and, if you ask them, most of them would tell you that they wouldn't have been upset about dealing with a disorder.  they just want their child.  not a boy.  not a girl.  not a healthy baby.  just their child.
as we near the time period when we would be able to find out what gender our baby will be, we do it knowing full well that we have not been given any sort of guarantees about this child, and the health of it.  neither of our daughter's genetic disorders were 'caused' by anything more than a sperm or egg that had a chromosome on it that was a little wonky. it was nothing that either of their parents did.  and, as a result, we have just as much of a chance of wonky chromosomes as their parents did. 
so, what do we want?  we want to get to parent this child.  but, we make no big plans about who he or she will be.  we will wait, and rejoice in the child we end up with.  boy.  girl.  typical.  just as weird as the rest of us.  we will love our third child.

on guarantees.

someone, somewhere, dreams of becoming a parent.  for the first time, for the fifth time.  they picture the beautiful baby that will expand their family.  +1  that day comes.  announcements are made.  cute pictures on facebook, an e-mail.  a phone call.  someone figures out a way to let friends and family know that there is going to be a child.
dreams are had. he will sleep peacefully during newborn photos with his little naked buns up in the air, and that cute hat on his head that was purchased on etsy.  all will be right in the world as his parents blissfully smell his head, rock him to sleep, and spend each day staring at him.
once baby is here, reality may shift a little.  new parents realize that their little just peed on mom's last clean outfit during the newborn shoot.  he doesn't sleep at night time, like a normal person.  he cries.  for no reason.  but, still, parents are in love.  baby is well cared for, and plans are made for another little.

so when people hear our stories, adoption, special needs, doctors, hospital stays, and the potential of a lifetime of parenting, they sigh.  'i could never....'   the list is endless.  and it's not worth hashing out all the reasons this phrase isn't true.  here's what i want to know.
where did you get your guarantee at?  did you purchase it somewhere?  did the ob office sell them, and i missed out on that because we adopted our kids? because from my own personal experiences, i would venture to say that just because your children are healthy now, doesn't mean that you won't someday be dealing with some of the same things i am.
i have multiple friends who were 'i could never-ing' only to find out that their child had a brain tumor, or cancer, or a genetic disorder that doesn't become apparent until slightly later in life.  and suddenly they were parenting a kid with special needs, doing long hospital stays, and facing the possibility of parenting their child for the rest of their lives.
somehow, we believe we have control over these sort of things.  the only people who those things happen to are those who didn't eat right in pregnancy, or exposed their children to something they shouldn't have, and on and on and on.  we judge our way out of anything bad ever happening to us.  we will not be faced with the possibility of a lifetime of parenting.  our children will grow up, go to college, get married, have children of their own, and we will travel and see the world after retirement.
but, here's the deal.  control is an illusion. you can hold as tight as you would like, but it's like trying to hold air.  there's nothing there to hold onto.  all you can do is take the world, one day at a time, and pray for the grace you need to face whatever lies ahead.  because husbands get cancer, and children get brain tumors, and there is a list of a million more things that could go wrong.
so please, stop telling me, and a million other people like me, that you couldn't do what i am.  stop making me a patron saint.  for today, our family is healthy.  we're doing well. and for that we are thankful.  because tomorrow holds no guarantees.  not for you.  not for us.  and the only thing different from my family and yours is that i am painfully aware of this truth.

new labels.

the battles had been many that day.  i was out of patience.  my voice, my reactions, became louder, and angrier with each outburst.  this time i carried her up the steps as she flailed and screamed.  i put her in her room and shut the door.  i began to walk down the steps, sat down, and just started sobbing.
i never wanted to be a parent who yelled.  especially not as much as i do.  what had happened to me?  those first few years with her were so easy.  she was compliant.  she was loving.  and now it seems that more often than not, she is a screaming, crying, mess.  what did i do wrong?
a few minutes later i heard her door open.  she sat down next to me on the steps, and laid her head on my arm.  'sorry mama, for my fit and my bad attitude.'  that, that's the little girl i know.  the one who lives life full of passion.  the little girl who wants to be a doctor so she can help people.  the one who rushes to her sister's side as soon as anyone comes close to her, and has to know what the doctors are doing to her sister when we go to appointments.  she's in there.

in our world we know what constitutes a big deal.  we don't freak out too much.  we embrace and love quirky.  our girls are healthy.  they have disorders.  they have medical things that hang over our heads.  but, in a world full of bigger things, harder things, and scarier things, these things are very small.  it's important to know this, and to remember this.

but, also in our world, i was at a point where i felt completely at a loss for how to parent well.  the things that used to work, no longer did.  and after multiple months of battles with my big, i sent our family doctor an e-mail sharing what was going on.  she set up an appointment with a neuro-developmental doctor.  and we waited.
i researched, talked, and learned a lout about sensory integration disorder (or sensory processing disorder) in the meantime.  i filled out some paperwork through the center where big was getting speech therapy, and got a call back that she definitely met the criteria.  so i studied her more, read more, and tried to figure out her quirks.
she is a sensory seeker.  she needs to jump, chew, touch, squeeze, move, swing, anything that gives her senses lots of input.  so we have worked hard to do this.  things got better.  not great.  not perfect.  but better.
and tuesday, we saw the new doctor.  and i shared our concerns, our thoughts, our desire to help her, and us.  there was an eval before he came in to see us.  and then he sat, and listened to me for five minutes.  he was talking, looked at me, and said, 'ive been in the room for five minutes.  she hasn't stopped moving yet.  i don't doubt the sensory stuff.  the signs are there.  but, your daughter has adhd.
nothing changed from the moment before he said, until the moment after, with abigail.  she was the exact same kid.  she isn't harder now because she has a new label.  she isn't less capable of learning.  part of the reason we chose to home school her is because we knew if we sent her to kindergarten that this would come up, and we didn't want to medicate her.
but, there was that moment where things were confirmed.  and i felt a little sad for abigail.  because the label comes with a stigma.  she doesn't even know that this label exist yet. she definitely doesn't know she has this label. i hesitated to share it publicly because of the stigma.
i want to be an advocate though.  i want to advocate that my daughter's hard wiring in her brain being different does not make her defective.  it makes her creative.  energetic.  full of life.  and yes, sometimes it makes her defiant.  we know that we cannot allow the behavior issues to disrupt life everyday.  so we are implementing some changes.  we are seeking the help we need to know how to best parent her.  we are researching dietary and natural things that might help us along the way.  and, for now, we are foregoing any medicine.
we love our full of life big.  we love how much energy she brings to everything...even if papa says, 'taking a regular, smiling picture of her is like trying to take a picture of bigfoot.'

The Kiss.

This image has been circulating my facebook news feed for a few hours.  It's the image of the Pope kissing a man.  Some of the headlines have said things like, 'Pope kisses man plagued with boils' and 'Pope embraces man with skin condition' and on and on.

He is being praised for embracing this severely disfigured man.  What if he had gotten whatever this man has?  I've seen comments about how beautiful it is that he is kissing someone who looks so repulsive. I've seen comments hoping that now this man can get the medical treatment he needs to get rid of whatever that is all over him.




This image is one of me kissing my big.  I do it lots and lots of times.  Every day.  I also pray for her.  I touch her without worrying about catching anything.  It just doesn't seem like that big of a deal right.  Nothing like what the Pope did by touching this man.
This man, he has Neurofibromatosis 1. It's the exact same genetic disorder that my daughter has.  No, she is not covered in dermal fibromas like this man.  Yet.  But, should that day come, I will not hesitate to embrace her, kiss her on the head, and pray for her.

things that are hard.

my writing on here has slowed down greatly.  it takes every last ounce of emotional energy to get through my days quite often right now.  i rarely want to talk about the really hard things of my life.  i'm afraid.  i'm afraid someone will read it and take away things i didn't say, and didn't mean. i'm afraid that someone will come here and decide that parenting children with special needs really is as hard as they thought it might be.
i'm reminded though, that sometimes, truth needs to be told.  hard needs to be shared.  and people will relate more than i could imagine.  so here goes.
first of all, i imagine that when i said things have been draining, you thought it might have to do with this pretty face.

and if you did, you are wrong.  while little comes with her own set of things that might seem like extra work, it is just the norm for us at this point.  plus, she is making huge strides forward developmentally, signing, and overall, is just a pretty easy going girl.

this girly, the one drawing with chalk, she's the one that sends me heart racing.  i lose sleep.  i shed tears.  i feel like perhaps i don't parent that well.  things have been tough.  i've been hesitant to talk about it, because it makes me feel like i'm failing.  the times i've tried to share, it gets written off.  'oh all kids go through a stage like that.'  or 'she's just testing the boundaries.'
but it's bigger than that.  jason and i have talked it to pieces.  and then, we decided we had to have help.  i can't spend hours every day just trying to keep her from falling apart, or eating something she shouldn't.  no, something bigger has to happen.
and so we await more appointments.  and we pray for answers.  and i fear the answers that may come.  but in the end, i need help.  and she needs help.  and our family will function much better if we know.
so please pray.  i am broken.  some days i see small glimpses of a little girl i used to know.  other days i wonder where she is, and if she will ever return.  i fear that NF has taken part of her.

busting out of boxes.

it's unbelievable.  less than two months.

this little girl.  the one learning to ride her bike.

she will turn five.

and start kindergarten.

i can't believe how amazing she is.  riding her bike. tying her shoes.  reading.  writing.  counting.  playing with her sister.  being a good friend.  loving green beans, broccoli, brussel sprouts, kale, spinach, and asparagus.  taking mint and basil leaves from my garden to eat.
she's not your typical five year old.  and with each  new skill, i am reminded, that labels don't tell any sort of story about a person.  boxes can be busted out of.  and littles can grow into more than we could ever imagine.

test. doctors. blah.

so big has been having headaches for about a month now.  it all started with a weird 36 hour high fever accompanied by a headache and neck pain, as well as light sensitivity and vomiting at some point.  it came on all of a sudden, and left just as quickly.  (and yes, we went to the doctor to make certain it wasn't meningitis).

almost every morning since then has been started with a headache.  so i finally called her neurologist.  tomorrow we will see the eye doctor to make sure there's nothing going on there, and have a head ct to see what is going on in there.  (yes a ct instead of an mri.  there's a good reason.  i don't desire to write it all out right now).
i mostly think she's fine, and she might just have headaches.  one of those fun NF things that can happen.  but also, she has NF...so we can't write things off quite so quickly.  thankfully, i'm aware that her mri in march was clear of tumors so i'm not freaking out about it.

and little has been on her new seizure med for almost a week now.  one of the potential side effects is glaucoma. it's a low risk, but it's there.  and a sign of it would be red eye.  guess who's eyes started to get very red this afternoon.  i have no idea if it's from spending time outside at the splash park today, and just being tired from being in the sun, or if we were lucky enough to win the 'unlikely but worst side effect possible' lottery.

as i'm sure you might be able to guess, i'm a little all done right now.  and there's no time out in this game.  i got to keep pushing forward even on nights i want to collapse on the couch and be done....like tonight. so please pray. for the girls. for me. for jason.  and for our family to have rest.  not just sleep at night, but some real rest.

she loves the water. 

so did she! (i just did this hairstyle-first time doing yarn twist/extensions. she's in love with having 'long hair.')

here.

it's been multiple weeks since i've written anything.  there is a lot going on here.  seizures from little.  scary e.r. trip with big. nephew graduated.  fishing. swimming. trying to maintain some sort of organization in my house.  spring cleaning/purging. therapies. life here can get a little full sometimes.

and we're headed into adding speech therapy for big.  a 48 hour video eeg for little.  pulmonalogist appointment for both.  booth hearing test for little. dentist appointment for both. and cardiology with ekg and echo for little.
jason has also been working a lot.  weekends.  evenings.  going in early.  he's just been gone a lot.  so, in essence, it's the perfect recipe for me to get overwhelmed.  add to that that my four year old, for whatever reason, has spent the last three weeks testing boundaries, and you have a mama who is trying to get through every day with some amount of patience left.
so instead of spending a whole post breaking this all down, i'll leave you with some pictures of our lives over the last few weeks.  and when i've got a better handle on life here, or at very least, when we have had the opportunity to spend a few days at the splash park enjoying life, i'll write something awesome.

put put.  she cheated a lot, and hit one legitimate hole in one.

standing in therapy.

people slow down and stare at her when she plays outside.  the bonnet may have something to do with it.

playing with the neighbor boy.  everyday they drive their cars together.

her wizard of oz outfit for ballet.

she has learned to tie, and was practicing on her papa's shoes.  she also decided to show me a ballet move.

shilo clapping with her cousin.

fishing with her spiderman pole.

crazy bedhead.  and that face she made right as i took the picture.  silly girl.

passed out after swimming.

car ride home after a weekend with cousins.

both girls slept for a little bit.

the big.

a lot of my post lately have been about shilo.  she's in a stage of life where things are happening quickly, she's changing, and meeting new milestones.  she's also has a lot more going on medically right now than abigail does.  so to balance it, this post is dedicated to my big, and all her fabulousness.


we'll start with a few of my favorite recent anecdotes from her:

abigail holding two pieces of spinach:
'hey spinach.
hey what?
you have dip on your head.'
(laughter)
(talking about the civil war-and the pictures of abraham lincoln at connor prarie).
'do you know what a slave is?'
'no.'
'a slave is a person that someone else tries to own. they make them do things, whether they want to or not. and if they don't do it, they are mean to them.'
'you mean like when you tell me what to do?'

'that morning laura woke up. it was hot outside. it was cold outside. laura went outside and it was warm.'
(abigail 'reading on the banks of plum creek to herself)
'chickens don't have wings.'
'they do.'
'no they don't. i saw it on the computer.'
'i'm getting some special drinks for my retreat on friday. i'm going to spend the night with some of my friends from church.'
'why you going on a retreat?'
'sometimes mama's need to take a break. it will help me be a better mama.'
'you already take a break. you stay home everyday.'

'mama can you do this for me?'
'do what?'
'will you do this?'
'i'm not sure what you are wanting me to do.'
'me neither. (skips away).'
at 10:30 i hear a loud bang from the girl's bedroom. i go up to check, thinking abigail had fallen out of bed. 
'abigail, why are you still awake? and what was the bang?'
'that was me climbing back in bed. i was looking out the window. i was trying to see the moon so i could know if it was big or little. it's going around the earth right now.'
stranger to shilo: 'hi (unintelligible baby talk).'
abigail: 'she can't hear you. she's deaf.'
'mama, could you move that knife off of the table, so i don't just climb right up, and play with it and cut my finger off?'
...or you could just choose not to touch it....
'pigs are made our of bacon.' 

and i'll share a few of our favorite captured moments of abigail's.

showing off some moves.

puddle jumping.

after an evening storm.

she brought me flowers.  the one by itself is my favorite.

trying rhubarb from our garden.

we went to conner prarie.  she is obsessed with her subonnet like ingalls girls wore.

a spoonful of chocolate.  a silly face.

we swapped vest...and made our sassy face.

have i ever mentioned how jealous i am of this hair?

that's life with our big.  she makes us laugh a lot.  she is full of energy and loves life.