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.
 

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.

sliding.

swinging.

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.



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



Anxious joy.

It's bedtime.  I stand next to Asher's crib, holding him as he snuggles against my shoulder and hugs me.  I slowly rub his back, and drink in his smell before laying him down.  The moment is pure joy.
The two littles are napping.  Abigail curls up against me on the couch.  We sit together watching something on television, or reading together.  I kiss her forehead and tell her how much I love being her mama.  The moment is pure joy.
Shilo crawls away from me, giggling, turns, and signs again.  I tickle her, and blow on her belly.  She laughs uncontrollably causing me to laugh just as hard.  Then, we start over again. The moment is pure joy.

And, in each of these moments the joy is mixed with an intense amount of anxiety.  It's simultaneously life giving, and panic inducing.  All of the things that can go wrong flow through my head at the same time, bidding me not to love so much.  To protect myself.  Think of all the things in the world that could possibly go wrong, taking away these sort of moments.

I fight it.  I'm allowed to feel joy.  I don't have to pair it with anxiety.  I can just love the moment.  If something did happen, I would want to remember these moments.  I would want them to be imbedded so deeply that I can feel them.  The weight of Asher on my shoulder, Abigail curved against my side, Shilo's little body shaking as she giggles. 

I'm learning to love the moments, and quietly shush the fears that want to drown out the joy.  There are days where the fears will win.  Days filled with appointments, or bad news, that I allow myself to research, lament, and grieve.  But, I don't want these things to win.  I want joy to win in the moment to moment things each day. 

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.

Resolutions.

A year ago right now, I had just been discharged after a week in the hospital.  Tiny was still inpatient, but got to move into a room with me.  We were mastering breast feeding together.  It was all beautiful.  And hard. 

Now it just seems surreal.  And, I sit here tonight thinking about the past year, and all it's brought. We aren't really a family that makes resolutions.  I mostly feel like they're probably just something else for me to feel guilty about, when I inevitably fail at them. 
But, this year, it feels a little magical getting to start a new year.  Like, somehow, things from the past really may have been swept away.  All is new.
Maybe I really can put some new habits into practice.  And throw some old ones out. 

Most of them will revolve around saying things like, 'letting your children watch two episodes of sesame street because you're really tired from being up in the night with tiny, does not make you a horrible parent. you're doing great, mama!!'
And, 'be more gentle with big.  She's just a kid.  She has been through a lot in her short seven years.'

I think I can totally do these.  Maybe my resolution is really just to be kinder.  To myself.  To others.  The first one will likely cause bleed over into the second.
My other resolution is to sleep through the night.  If someone could let tiny know about that one....


Happy New Year.  May the good things of the year outweigh the not so good ones.

what i want you to see.

last night, papa was gone for Thursday night practice.  like he is every Thursday.  I was making dinner.  tiny was sleeping.  big, little and I were in the kitchen dancing (and just to be completely honest, little was laughing at my singing).  it was a moment that I felt that, 'this is the kind of mom I pictured myself being. dancing in the kitchen while I make dinner.;
my mind quickly reminded me of all of the things I was falling short on in that moment.  my house was a wreck.  books covered the floor of the dining room.  toys all over in the den and kitchen floor.  dirty clothes on the bathroom floor.  dishes all over the counter.  both the kitchen and dining room table needed washed.  there were  multiple piles of papers in both rooms as well.  and to top it all off, my kids were going to be eating cheesy noodles (box mix macaroni and cheese, which I validate because I buy the high end organic stuff) for the fourth time this week.
later I found myself sitting on the closed toilet, nursing tiny, while little went potty, and big was swinging on her indoor swing that hangs in the bathroom doorway. 
little was doing acrobatics and signing 'let it go' in between, while big was standing on the swing and talking at me about her birthday party (that isn't for another six months) and all the things that would be happening. I was truly not taking in anything big was saying, which was causing her great frustration when she would ask a question and then have to repeat herself. also as was bound to happen, little fell off of her toilet, it flipped upside down and, hooray, she had gone potty.
it struck me that if I were to share these moments with others via some sort of social networking sight, I had two ways of presenting it.  one made me look really good.  the other made me look not so great.  neither would be a lie.
they were both true.  I was doing great.  there were things I could do better.  there was lots of fun.  there was lots of chaos. I love being a mom.  I want a break from my kids. 
there are those people who only share one half of these stories all the time.  those moms who show their pinterest projects, and smiling kids, and the dancing in the kitchen moments. clearly they have it all together, and parenting is a breeze.
then there are those who share how they can't get their kids to pick up, or eat healthy, or even to sit on the potty, yet alone pee in it and spill it everywhere.  clearly they are failing, and parenting is really hard.

i hope that my children remember and drink in the memories of dancing in the kitchen.  i also hope they remember that our house wasn't always neat.  we have fun.  we laugh.  we get frustrated and raise our voices a few levels higher than we want to.  we say sorry.  we forgive each other.  and, we do it all over the next day.  parenting is great. and hard. and great.  it's because it's full of interactions between humans.  and, if i can do anything well, it will be to teach them to give themselves grace for the moments that i might not want you to see on facebook.

drowning.

i'm swimming.

most days, against the current.  and the current is strong.  and it threatens to pull me back with it.


 

but, I keep fighting.  kicking.  going places.  then, a day comes along.  and it threatens to not just drag me backwards, but to pull me under.  and the water from above just keeps coming.  washing over me.  leaving me breathless.

there are days that start with the continuation of processing the neuro-psych evaluation we got back about our big.  the words the doctor spoke, both gently, and encouraging, still left us unsure of how to best move forward in schooling her.  and, it looks like home is the way to go.

and a little, who's IEP is still not yet done.  and we should get services in place in time for the school year to end, and nothing to have actually ever been implemented.  all because we fought for what was best for our daughter.  and today she's sick.  and having seizures.  and incessantly asking to watch signing time. and starting to walk up the steps by herself.  and climbing onto the couch to unfold the laundry as I fold it.

and a tiny who only turns his head to the left.  so much so that he can't turn his head to the right, and the back of his head is getting a flat spot.  so we schedule an appointment for p.t.  and a follow up renal ultrasound to see if he outgrew his hydronephrosis.  and the tucking away of the anxieties about him not yet meeting any milestones, and regularly crossing his eyes.  and longing.  wanting something to feel easy. 

as the waters rush over, I hear the voices from above.  the ones that asked me while I was pregnant what I was going to do with a healthy kid, a typical kid, a normal kid, this time.  and wanting to grab them and pull them down with me.  to let them see that nothing feels normal from down here.  that once you have been here, you lay in bed at night evaluating every thing your child is, or isn't doing.

when you have been down here, you end up needing a counselor to walk you through your anxieties.  they are big, and they feel real, even when everyone else around you is telling you that everything is fine.  it doesn't feel fine. it feels hard.  and overwhelming.  and, a little bit like things aren't allowed to be easy.

from the outside,  it all appears normal though.  most of the people on the sideline just see someone swimming.  and some of them cheer loudly.  the cheering is often what keeps me from completely being swept away.  it lets me know I can do another lap.  every now and then, I even have someone who tags in for me for a while.  who takes a few laps, and lets me sit on the side, huddled under a towel, catching my breath.

tonight, i'm tired of smiling through things.  i'm tired of specialist, and therapies, and meetings, and evaluations.  i'm tired of hospital stays, and learning new diagnoses, and the fears that have taken up residence in my head.  so i'm going to choose to share those things.  i'm going to choose to be real. because today, tonight, it feels like i'm drowning.
tomorrow morning, i'll get up, crank up some music, and sing louder than the fears in my head. 

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. 

somewhat real life.



we are big fans of lifestyle photography, which just means that we like pictures that show us in a little more day to day type setting over posed, everyone smiling type pictures.  the picture at the tops should be a pretty good indicator of that.
anyway, we hadn't had pictures of our family, like this, taken since shilo was two months old.  but, as shilo has gotten healthier and healthier, I have really wanted some fun photos to document our family.
so, for our Christmas present to each other (ourselves) Jason and I held off buying each other anything, and instead invested in family photos.  I can't post them all, because there are just too many, but they turned out amazing.  they were taken buy kira childer's photogoraphy.  there are some sneak previews she posted on her facebook page, if you want to look through those as well, and i'll share some of our favorites.
a few fun facts about these pictures: 1) they are all taken at our home.  2)  the bugle that appears came from my grandfather's home, who had passed away a few weeks before these were taken.  3) Abigail lost her first tooth the day before pictures which made it even more awesome. 

*these are all copyrighted.  you may not take them from my blog.*