Space.

Too much. Too loud. Too vocal.  Drawing attention.  Advocating loudly.  Never satisfied.

In the space of a few weeks, these words became loud in my mind.  Back to school meant lots of conversations, text, and e-mails.  Needs.  Disagreeing with people, and working really hard to come across diplomatically.  My mind bent over gasping for air while trying not to throw up.  Not because it was bad.  Or, received poorly.  But, because advocating is hard. And, scary.  Necessary.  While invoking fears that if things are pushed too hard, too loudly, or we just take up too much space, my children could suffer the repercussions.  Part of me wants to apologize for speaking up at all.  Making waves.  I can feel it.  It's too much space out of a whole lot of kids with needs.  We're not staying in our area. 

A trip to the park buzzing over the excitement of a new swing.  One I can roll a wheelchair up on, and watch her lean back and smile in the breeze.  I pull up, and immediately feel all the blood rush to my face.  They've built a swing. A whole separate area for kids with disabilities.  I can't believe it.  How did this happen?  So I speak up.  I arrange meeting and have hard conversations.  I listen, and try to understand.  I tell them what I want, knowing the cost is astronomical in a Midwestern city that has lost its' factories and is struggling to survive. And, I know, I'm taking up too much space in the financial agenda of a city. 

We're out.  Little is excited.  She makes her noises.  Grunty and screechy.  Over and over.  It's loud.  People move away or stare.  They don't know how to respond to it.  She's just communicating.  We're used to it.  But, all of a sudden, I know.  Too much space.  We are occupying more than our share of the noise level. 

Sunday morning.  Front row during worship because that's where little wants to be.  She can see all the instruments.  The singers.  There's room to dance.  And, a few times, she makes her way on stage and just sits there, watching everyone, dancing, and sometimes even singing.  I breathe deep and purposeful to slow my heart, thankful I can't see anyone behind me.  She darts quickly to make an attempt at grabbing the guitar, and I sprint on stage and grab her.  This sort of thing repeats a few times, amidst her other antics of trying to get me to hang her upside down, do flips, and use me as a jungle gym.  I can feel it.  Sweat is starting to pour out of me.  We're taking up more than our share of space.  Drawing attention away from the things people want to be focusing on.

I drop little off at Sunday school, and slink into the back of the church.  The weight of the past week of advocating, and feeling too much settles in.  I'm self conscious from the worship time, and uncertain whether bringing her in for it, no matter how much she begs, is truly the right thing to do.  Our pastor stands up, talks a little about the set up of Sunday school, who goes where, when.  And, out loud, in front of everyone, welcomes my daughter by name to be part of worship as she sees fit. 

The tears are no longer staying just behind the surface. They spill out onto my cheeks.  I'm reminded how long it took for people like little to be allowed any space in society at all.  Their space used to be one that hid them away.  Gave them less area than was theirs.  Took a family, an education, self worth, outdoors, human interaction, dignity, and at times, their lives.

It's okay for her to take up more space now.  To grab back what was denied so many before her.  To loudly declare that she is alive, and has worth.  This is her time.  Her place.  And, we will be here, taking up more than our share of space.

Remembering

On this day, six years ago, our daughter coded.  I wrote about it here. Every year, as the day approaches, my heart lurches in my chest.  The struggle with guilt, and sorrow during this season often play on my mind.  But, at the same time, each year seems to be a little bit easier.  Each year she's older.  And, bigger.  The things still affected by all of it decrease.  It feels like a foggy dream that might not even be real sometimes.

As the day approached this year, I thought a lot about the hard stuff.  As always, I replayed the whole of her getting sick in my head, this time though, I make different choices.  This time she doesn't get sick.  But, then, I can't go forward from there.  I don't know what life would look like if she hadn't spent thirteen weeks in the hospital.  Maybe I want to know.  But, maybe it's not actually better (although most of me believes it would have been much better if that hadn't happened). 
At the end of my thoughts, I take a deep breath, tell myself that it happened, I can't change that, and I have the now.  So this weekend, I chose to spend extra time drinking in the joy of Shilo.  Her orneriness.  Her smile.  Her snuggles.  Her kisses.  The very fact that she is here with us, and that she brings so much joy to us, and others. 
Remembering is hard.  It always will be.  Focusing on the here and now though, it makes the pain feel a little less.  

 

 

 

 

 

 

 

 

 

 

 

Helping Papa make muffins.

Helping Mama replant her basil.

Sisters doing dishes.  (This scene made me all sorts of emotional yesterday.)

Sunday afternoon snuggling and watching Sesame Street.  Not long after this, we were both asleep.

There was no healing.

We recently got the official news that Shilo will not be able to walk independently.  It wasn't a surprise.  And, we're thankful to have something concrete so that as we work to make our house as accessible as possible for her, we can keep this in mind.  The cause is likely extended intubation brain damage.  It's more complex than that, but that's the best way to explain it. 

 

 

I recently sat in on a speaker, sharing with mothers an inspirational story.  The gist of it was that her son was sick, and it took much longer than it should have to figure out the diagnoses.  By the time he was diagnosed, he was at great risk of permanent damage and death.  He spent four days in the hospital.  And, he miraculously completely recovered.  No lasting damage.  Completely back to himself.  Everyone around me had tears running down their cheeks.  All glory was given to God.  He is so very good, after all.

I remember so many times in Shilo's first year where I wondered when our happy ending was coming.  I mean, we did what we were called to.  We stepped up and adopted a child that society saw as less than.  Surely we deserved great rewards.  Certainly God would show up at any time, and prove how very proud of us He was.
But, he didn't.  There was no miraculous healing.  There were hard days and nights.  There continue to be hard days and nights.  And, to really finalize the memory of those three months inpatient, we have the daily reminder of her inability to walk. 
I'm certain no moms group will be inviting me to tell her story.  It's a story where things were hard, then got harder.  It's a story about a life of a child with a disability, that has had diagnoses upon diagnoses added to her medical files.  It's a story where God does not show up in a grandiose way.
It's also a story about a little girl that completely wrecked us.  And, continues to.  That little girl smiles through blood draws.  She hugs me every day when I pick her up from kindergarten.  And, she changes the hearts of everyone she meets.  I don't mean that lightly.  I'm convinced her smile originates in the depths of her soul, and passes joy on to everyone around her. 

 

 

I don't need a big grand healing.  I need the daily dose of grace, reminding me that He is indeed sufficient.  I need the conversation with God where I ask the hard questions and He just silently whispers to keep asking.  Even if it's for the rest of my life.  'Grace upon grace, my daughter,' he reminds me, even when there are no answers. 
And, I need to share her story.  Our family story.  About how there were hard things, then some more hard things, and currently, there are hard things.  All that we have the ability to do is walk through those.  Perhaps our story makes it much easier for others around us to relate to us.  Perhaps the hard stuff is simply a result of living in a world where things are just not perfect. Through it all,  we will continue to give all glory to God.  He is good, after all.







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.

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



Storms.

I live in the Midwest.  We tend to stand on the porch and watch as the storm clouds roll in, and the thunder begins.  But, once the weather gets strong enough, we head back in to our protective covering.  And, if the siren goes off, you better believe we're headed to the basement.  We aren't taking any chances.  We know how to appreciate  a storm, and we know when to retreat to safety.

Today, I took my three trips to the car.  First, I loaded our diaper bag, and gear for the day.  My second trip, I buckled Asher in.  And, as I stood on the porch locking the door and holding Shilo, it began to sprinkle.  She was my last trip. I got her in her seat, and hurried around to get in, and out of the rain.
I drove off.  The rain wasn't very heavy.  I was headed west.  The rain was headed southeast.  So as I drove, to the left of me, the sky was dark, and promised a good storm.  To the right, there was a reminder that the storm was going to pass.  And just ahead of me, very faintly, stood a rainbow you could only see half of.  I drove towards it.  It appeared to be just beyond me, giving the illusion if I drove just a little further, maybe, just possibly, I could pass under it into some magical utopia full of great things. 

But, I knew that wasn't in the plan for the day.  I was going to head west for only so far, and then my destiny was due south.  Right through the storm.  So I took a deep breath, gripped the wheel, and turned on my headlights. 
It wasn't long before the downpour was so hard that even with my wipers on high, and a slower speed, I could barely see any of the other vehicles around me.  But, I trudged forward, at a slower pace to remain safe.  I didn't have much choice.  I had to be somewhere, and the only way to get there was to drive through that storm.
By the time we reached our destination, the sky was beginning to lighten.  There were only reminders of the passing storm in puddles, and wet things.  We made it safely to where we were going.

As I was driving through it, I kept thinking about how appropriate it was to be in that storm today.  How it felt like a metaphor for my day.  It started with picking out a wheelchair for Shilo.  It needed to happen.  We're so glad we did it.  But, it was sort of like a light rain.  Not horrible.  You know it's good for the plants.  But, it still feels a little less than ideal when you have to deal with it.
Shilo totally rocked it though.  She quickly figured out forwards and backwards, and we got excited about the independence this could bring to her.  There was a half of a rainbow, looming overhead after this storm.

But, the next appointment felt like the downpour.  We sat in the neurosurgeon's office discussing what releasing Asher's tethered spinal cord would entail.  It felt like too much.  I could barely see, and was trying to navigate slowly.  In the end, it's also good for the plants.  But, it also can bring potentials with it that aren't as great.  Things like lightning that can harm.  Flash flooding.  Slick roadways.  So, we move ahead, cautiously.
For now, we are awaiting an appointment with cardiology to give clearance for the surgery.  But, in the near future, the doctor will move bone, open up the membrane at the bottom of the spinal cord that contains spinal fluid, and remove the lipoma from his spinal cord.  She will sew it back up, and then Asher will be required to lay flat for at least 24 hours.  She's done this a million times.  She's great at it.  This is our first time.  And, there are risk.
So for now, we cautiously head into this next storm.  The other side should be blue skies.  Fluffy clouds.  Puddles to jump in.  But, right now, we're driving slow with our headlights on.  We've driven through a lot of storms.  This just happens to be then next one.

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. 

a one story house.

we're on a little journey here.  one where we spend a lot of time searching.  one that will hopefully end with finding.  but for now, we pick things up along the way.  one little thing here.  then another over there.  and sometimes they make lots of sense together.  and others it seems like maybe we'll end up going down lots of paths to find. 
and in this searching, Jason and I, we spend time taking notes.  and discussing those notes with doctors.  and therapist.  and each other.  and trying so hard to pull all the things together.
we knew at the beginning of these sorts of journeys, and onward, no matter how long, there is often a lot of energy focused on the fight.  fighting to make it over, across, through.  to just be heard. to figure out what's best, and do that.  to learn to live in a place of hope.  of faith.  no matter how big the piles of shit are that we just seem to always be stepping in.

today. today felt like we managed to move forward at sprint pace, but marathon distance.  our first victory of the day, a new house.  a new, one story house.  a house where I will no longer have to carry children up and down steps multiple times a day.  a house where little can crawl into her bedroom and play until her heart's content.  a house, where, in the future, tiny can do the same.  a house that will work so much better for our families needs right now. 

and then, an appointment.  I pulled up tiny's shirt and said, we have noticed his back looks weird.  i'm not going to point it out.  I just want you to look at it and see if you notice anything.  and she listened. really listened.  and looked.  and told me something I almost suspected, then pushed out of my head very quickly.
1 in 10,000.  that's the statistic for children who have congenital scoliosis.  tiny has congenital scoliosis.  we have no idea what this means down the road.  we will have some imaging done. we will see a specialist. we will do what needs to be done.  we will continue on searching for answers. 

but, somehow the fact that we got word that we got the one story house, one hour before a doctor said my ten month old has scoliosis seems like a beautiful mess.  maybe they aren't connected at all.  maybe it's purely coincidence.
then again, maybe i'll cling to my faith in a God who would make certain we had the exact right place to live, just in time to find out a little more about how important it will be for our family.
to continue to live in a place where the piles we step in often seem to grow in size and quantity on a daily basis, I have to cling to the second conclusion.  without it, this is all too much. it's too cruel.  but, when there is hope.  when there is faith.  then, can we move forward on this journey.  then, can we remember that the small things are tiny sparks of what lies ahead. of all things being new. of new bodies.  and no more brokenness.
but for now, for today, heaven showed up in a one story house.

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.

hospital stays and littles.

shilo spent half of the first year of her life in and out of the hospital, and has had other short stays off and on since then.  our longest stay was three months straight.  i had lots of things i had to work through as a result.  Jason and i have talked through our emotions a million times.  as new layers come up, even now, i know i can go to him and talk it out.  i've also seen a professional counselor to work through some of the issues.
when you're three, the words to describe how you feel are limited.  no matter how much we talked with big during all of this, and how much freedom we give her to share her thoughts and fears, even now, almost three years later, her ability to completely and adequately share her emotions regarding all of this, are limited.  even seeing a counselor who is amazing, she still isn't able to put all of her fears into words.  they come out, just in other more subtle, and generally annoying ways.
so the last few weeks with big have been atrocious at times.  she goes from yelling and telling me no to being unwilling to do anything other than stand or sit right up against me, and tell me she loves me over and over again.  and then, doing the same thing with Jason.

turns out, that the idea of her mama going to the hospital, and her little brother being born in the hospital might just be causing her a bit of anxiety.  it took us a little bit to figure it out.  but, it makes sense.  her reference for hospital stays is half of her family being an hour and a half away, her parents stress levels being through the roof, and spending lots of time at other people's houses.
today, i sat down and had a conversation with her about what she thought was going to happen.  it's a tough road to navigate because while i can give her run down of what usually happens when someone has a baby, i cannot tell her that everything will be okay.  i cannot tell her we will be home in a couple of days.  i can't make any guarantees to her.  so i can just give her the basics of what to expect.
i have a call in to the hospital to see if we can walk through with her to show her where we will be, and what it's usually like.  but, to be honest, this is super hard.  there are no children books on how to help your kid navigate a 'routine hospital visit' when she has some ptsd from hospital stays.
at this point, i'll spend the next eight weeks telling her over and over what it will likely be like when i go into labor.  i'll reassure her about who will be taking care of her and little.  and, even then, she will continue to tell me things throughout the day like, 'i don't want tiny to be in the hospital' and 'i hope tiny doesn't have seizures.'  all i can say is, 'me too.'

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. 

things that are and aren't appropriate.

yesterday, shilo and I got a rare time out of the house with just the two of us.  it was to get her g-tube changed so not a fun experience for her.  however, whenever it's just her and it, the staring numbers drop substantially.  apparently, not having two children, of two different races, makes me stand out less.
i'm a very obvious pregnant at this point (almost 30 weeks).  no more questionable bump.  all of my weight gain is in the front, and most in my belly (some is slightly north of it).  this helps set the stage for the question that I am still trying to 'shake off.'

we had been put in a room to wait, and a nurse comes in to do the once over on meds etc. for shilo.  she looks up at one point and says,
'oh, your family is expanding.'
'yes.  we have a little guy due at the end of January.'
'how exciting.'
she then looks at shilo, and back at me.
'so, is there anything wrong with this baby?'

1.  she is a nurse in a pediatric doctor's office that specializes in caring for children with special needs.  this alone means she should have had the sensitivity training to know it was not an appropriate question.

2.  she is a nurse, and therefore, I would think she would know that Down syndrome is extremely rarely inherited (there is a form of translocation Ds that is.  not important to understand, but you are welcome to research it more if you care).  (obviously shilo is adopted so this is a mute point, but she seemed unaware of that fact)

3.  IF by some chance there was something going on with this baby, perhaps I don't want to talk about it with a complete stranger.  or at all.

4.  it's really none of your business.  like, at all. 

I still have been unable to shake the question.  I have no idea what I even said in response because I was trying not to cry. 
if you see a pregnant mom, and she has a child with obvious special needs of some sort, you don't have the right to ask if this next baby has anything wrong.  even if you are super curious.  even if you work in the medical field.  it's just not your business. 
things you can say:
congratulations.  you look beautiful.  do you know what you are having?  have you picked out a name? when are you due?  is big sister excited?  
these are all things I don't mind answering.  at all.  (or being told). 

the weaning of the tube: part 2.

a while back, I shared that we were doing a somewhat aggressive tube wean to attempt to get shilo to eat food by mouth.
the wean began on june 15th.  in the beginning we did weekly weight checks.  she lost weight.  also, once all daytime calories were gone through the tube, we would attempt to get some extra calories in by pushing a blend through the tube once she was asleep.
on august 9th, we got the official clearance from the dietician to stop the night time calories.  in a little under two months, shilo went from every sustainable calorie being through a tube, to everything she eats being by mouth.  (she still has not figured out how to drink so the tube is still in use for all liquids and meds).
I can't even share how well this went.  there are families who spend months, and even years attempting to get their kids to eat enough to not use the tube.  our only magic potion was working hard to follow shilo's lead-which meant, 'don't try to feed me.  i'll do it myself.'  we still have to cut everything up, and give her one bite at a time, but none of this seems like that big of a deal.  six months ago, shilo didn't know how to swallow.  at all.  and now, we have to buy her, her own meal when we go out to eat.
there are days where it feels like life has always been like this.  but, most days, I am in absolute awe of the fact that my child is eating by mouth.  she has no true texture aversions.  she doesn't like cold, and we are working hard on getting her to eat fruit.  so no ice cream (unless you warm it a bit in the microwave first.  weirdo.), and we are continually offering her different fruits over and over again with the knowledge that lots of children have to try things multiple times before the decide they like it.  we're making progress as we started out with no fruits, and she will now eat all types of melon, banana, and grapes, and is willing to humor me with a few bites of plum, kiwi, and strawberries before she refuses them.
she has favorites, like most toddlers.  (pasta of any sort, as you will see in the photo below). and there are meals where I have to remind myself not to get upset or panic that she didn't eat much, because all toddlers do this.  she puts food in her hair, and gets it all over herself.  her weight is more than it was before we started, and she's grown 1/2 an inch.  she tells us when she's hungry.  if she sees someone else eating, she asks for some (or attempts to grab it out of their hand or off of their plate).
I really hope this gives others some hope that their child will likely eat some day.  it may not go as easily or as quickly as it did for shilo, but it's possible!!

skills, suckers, and being defined.

this is our youngest daughter, shilo.  she is two, almost three.  she has one of the best smiles in the world.  she has trisomy 21, otherwise known as Down syndrome.
she can crawl (fast), pull up, and walk (run) in her gait trainer, and loves music and dancing.

a lot of the world sees her and can't see anything besides those almond shaped eyes that lets them know that she has Down syndrome.  there are lots of stereotypes that come with that:  always happy, doesn't understand what's going on around her, easy going, compliant, and the list goes on.
shilo's personality is pretty easy going.  she is an overall happy kid.  but anyone who spends much time with her will quickly realize something, shilo is NOT Down syndrome.  she is a two year old. 

here is a list of things that shilo did today that are pretty typical for her:
-threw food on the floor at breakfast
-wiped yogurt and banana in her hair
-got every toy she could reach, out
-attempted to take her dress off as i put it on her
-threw her shoes while i was putting her socks on, then took her socks off while i was getting her shoes again
-turned around and stood up in her car seat while i tried to buckle her in
-walked to the nursery door and signed, 'play' over and over until it was time to go to nursery
-when i picked her up, the mom who was working nursery told me that she was the unsuspecting food thief: she crawled around stealing everyone else's cheerios
-attempted to get into, and take things from a stranger's purse
-threw food on the floor during lunch
-tried taking a chip out of an adults hand while they were talking to me
-grabbed a friend's boob while she was talking to  me
-refused her snack because she wanted French fries
-dumped trash all over
-ripped her bib off and threw it

i'm assuming there are some other moms of two year olds who can relate to this.  and, i'm betting, that they don't all have kids with an extra chromosome.  it turns out that her Down syndrome doesn't define her.  her personality isn't shaped by that chromosome.  she is an individual, who is capable of obeying, and disobeying.  being happy, or sad.  and if you think she doesn't understand you, she will figure it out quickly.  that sweet smile up there with a sideways head tilt is the go to move whenever she does something she knows she shouldn't.  she has skills, and she will play you for the sucker you are, if you underestimate her.

...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.

the weaning of the tube.

as you may have noticed, I am few and far between in my writing right now.  it's for good reason.  one I will share in more detail sometime in the future.  I have a few posts started for an adoption series I plan to do.  but, to be honest, afternoon napping is winning most days over blogging.  judge all you want to, this mama is tired.

anyway, wanted to update you all on just one of the fun things we are embarking on right now.  about six weeks ago, shilo took off in the eating department.  before this, she as great at putting things in her mouth, but they mostly got chewed and spit back out.  something started to click though, and more and more food was getting chewed and swallowed.  we were ecstatic.  we had been working towards doing a tube wean, and have officially started it.
a tube wean is when you stop feeding your child by g-tube in hopes of getting them to eat by mouth.  some people do it much differently than we are, but we are offering shilo foods throughout the day, and meals at meal time.  she feeds herself (she will not tolerate someone trying to feed her), and chooses what goes in her mouth.  here's the lay out of our wean, and how it's going so far.

day 1: 1/2 breakfast, rest of the day normal.
day2:  no breakfast, rest of the day normal.
day 3: no breakfast, 1/2 lunch, rest of the day normal.
day 4: no breakfast or lunch, normal dinner.
day 5:  no breakfast or lunch, 1/2 dinner.
day 6: no meals during the day via tube.

with this wean, we still have to give meds in the morning and at noon through the tube.  we are doing some water with this to help prevent dehydration, but not the normal amount, in hopes of helping her learn to drink by mouth as well.  to be quite honest though, I think we will be using the tube for fluids for a while after this, because she's just not good at swallowing drinks yet.  she also will continue to get whole milk after she's asleep at night, and once all food is gone, it's possible we will do some other things (blends or something of the sort) to help get some calories in her.  the goal is for her to not know we are using her tube though-which is why it would be when she is asleep.

we are on day five.  she's not eating tons.  she is eating.  and thus far we haven't seen any major changes in her demeanor.  today, for example, she ate about 1/2 cup of dry cereal at breakfast, a few puffs at the library (along with an eraser, two stickers, and part of a pine cone.  we count that as food in this situation), about 1/3 of a peanut butter sandwich, and some broccoli (a lot of this still gets chewed and spit back out, but some is starting to be swallowed).  she's had some water through her tube, and attempted drinks by mouth at each meal.  I remind myself that she is likely eating similar to what most toddlers do, and i'm not used to it because we can get a great balance in by tube. 

in all honesty, this sucks.  I hate not knowing if she's full enough at the end of a meal.  I hate feeling like i'm depriving my kid, even if it is under the supervision of a dietician and doctor.  but, in the end, I really hope, and pray, and believe, that this is the only way we will ever get her to take in nutrition by mouth. 

so to balance out the heavy, here's this hard thing we're doing right now, you should go watch this video of shilo doing awesome things!!!

happy heart day.

two year ago we got up early and talked to a bright eyed little.  we prayed over her.  we sat anxiously.

we walked with the nurses as they wheeled her from her home of two months to the operation room.  we kissed her goodbye, and sat for nine hours, waiting to see her again.

afterwards there were more tubes and wired than there had been before, and she was on a medicine to paralyze her because her sternum was still open.

but, much to everyone's surprise she did great, and they took her back to surgery and closed her sternum.

a week later, after nine weeks and one day, she came off of the vent.  for the first time in over two months she no longer had a tube in her throat. 

...and it would be really easy to focus on the hardness of that part of our lives.  but, two years later, i'd much rather share who shilo is today.  a two and a half year old, full of life, joy, and orneriness.  she can communicate very well, by signing.  she is strong willed.  she has learned to use the potty all the time.  she is madly in love with her big sister.  Jason and I took some time this year to go back and read all of the messages we got that day, all the people who were praying, and sharing our story so that others could pray.  and instead of feeling sad, all I could feel was the love of a community who surrounded us beautifully during the hardest time in our lives, and continue to do so now.  so today, we celebrate two years with a fixed heart.  and we rejoice at the little God blessed us with.

happy heart day little.  we love you greatly!!