Toddler Drawing Vortex of Grief

Everyone who lives, will at some point experience grief.  The loss of a pet, a friend moving a way, a hard diagnoses, losing grandparents, and the list goes on.  Part of living, is hard things.  There's no way around it.  And, by the time people are early adults, most are familiar with the concept of the five stages of grief.  It starts with denial, and ends with acceptance.  We view ourselves walking through each stage, and when we finally land at acceptance, it's this euphoric moment of peace where we are likely teleported to a peaceful tropical place for a few minutes, arms wide open, head tilted towards the sun, smiling and drinking in our arrival.

It's a lie.  The five stages of grief are real.  The woman that studied them, the research, and so on, all very real.  But, the things you know about it, not so much.  The most important thing to know about this is that these stages weren't researched on the people left behind.  The research was done on people with terminal illnesses.  The stages of grief are true for those who are dying.  ( In case you think I'm making this up, or aren't sure you buy what I'm selling, here's an article about it).

For so many people, grief looks much different.  It's much closer to this picture my son drew for me.

 

 

There are lots of colors.  Some lines that are mostly straight, but a whole lot of curves.  Some dots.  Somehow something sparkly got on the paper.  And, he says it's a picture of him and I, and it's very happy so I just nod my head as if that makes any sense with what I'm actually seeing.
This is how grief looks for me.  Especially when it comes to my childrens' diagnoses.  There are days where I feel like I've fully accepted things, and we're rolling with the punches.  Then three days later, I'm in my head, magically changing time so that I somehow prevent little getting sick and spending months in the hospital.  We avoid all foods that have nothing to do with my big's tumor, but none the less, I prevent it.   Or, I magically eat and drink all the right things and tiny is born without any congenital defects.  Do I have any idea if his defects were caused by anything I did or didn't do?  Not the point.  I'm in the toddler drawing vortex of grief, and today I'm living in denial, thank you very much.  Tomorrow I'll probably do some bargaining by way of yelling at God. And, in two weeks, you'll see me and I'll tell you that everything is great, things are going smoothly, and none of this stuff even phases me anymore. 

Grief for those of us still here, living the day in and day out, is messy.  It's complicated.  And, its filled with a toddler drawing of the grief stages.  I hope you all are enjoying your time in the vortex as much as I am!



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.

Big Feelings.

I'll be honest, I'm mucking up this parenting thing quite a bit.  But, every now and then, I get an opportunity to step back in a moment and feel like I did a good job.  This is one of those moments, and I have permission to share it from my big.

Last night, during the chaos of bath, and bed, and Jason being at work, my big girl made a choice that had a consequence she was pretty bummed about.  And, as we are prone to do, instead of accepting the consequence and moving on, she got angry, and made things bigger and worse, resulting in another consequence.
After some time in her room, she brought me a note, "Mama, You make me feel like shit.  I know you don't like it, but you make me feel like ass and shit."  First of all, as soon as she went back in her room, I was laughing so hard I was crying.  Those are words she learned this past year, and while she knows the general meaning of them, she more so knows that they hold big emotions and get big responses.

After the other two littles were in bed, she came out to talk.  She had calmed down at this point, and was ready to hear what I had to say.  We talked about how she was feeling.  We talked about how God gave us emotions, and they are good.  She was surprised when I said that even anger and sorrow were emotions from God.  The conversation went further with the two things that are important to figure out about emotions.
First, and foremost, we are in charge of our own emotions.  Nobody makes us feel.  We might have a feeling in response to something someone says or does, but they didn't force that feeling upon us.  That's our response to what happens.  And, however we feel in response to things is okay.  Second, it's what we do with our emotions that matters.  If we are angry, and we paint a pictures, or write in our journal about it, that's fine.  If we're angry, and we punch someone, that's a problem.  We have to learn to own our emotions, and be in control enough that even when we have really big feelings, we can do something healthy and constructive with them.

At the end of the conversation, big got a little sheepish.  'Sorry I said those words.'  I had not, never once, even brought them up.  It would've been easy to focus on the letter of the law-'Those are adult words. You aren't an adult.' or I had the opportunity to look beyond the words, and try to see my girl's heart.  And, her heart was sad about the choices she made, and the consequences that resulted.  Once I focused on that, and helping her to feel the restoration of my love, nothing else mattered.  When kids have big feelings, it is our job to help them sort through them. 

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.

So we wait.

A lot of spit.  Some blood. Chocolate chip cookies. And, months of waiting, ahead. And, hoping.  Reading scholarly journals until I drive myself to the brink.  Then, enjoying a little boy with a Dino obsession.  All with the desire for something that explains all of the medical things in the life of Tiny.

Take my hand and lead me on.

Occasionally, there are things said, and done.  Big things.  Big enough to make their rounds on social media, being shared and reshared by the masses.  People are riled up.  They're angry.  And, I'll read those things.  I'll watch those videos, and I'm often stirred with anger and indignation.  I think to myself, 'Yes!  This is one of those times the whole world can agree that this is not okay.'

I'm wrong.  Every time.  The world doesn't agree.  They dig deeper.  They say more.  They mock those who are hurt with attempted insults of  'being a snowflake.'   I'm not sure that it is an insult to be honest.  I see nothing wrong with being someone who tends to fall softly, barely a thought to others. And, at other times, fall hard and blindingly, making people sit up and take notice.  Making people change plans.  I'll take snowflake.  While they can melt, they are also the making of slippery roads, and deep avalanches.  I'll fall softly when needed, and I'll evaporate to start the process over.  Waiting until just the right time to come forth again.  Perhaps I'll fall softly again.  Maybe, I'll be part of a big storm.

Right now, I'm hoping for storms.  I've been inundated with tales of people making fun of those with disabilities.  My newsfeed has shared all of them so many times.  On occasion, it's a friend defending it.  Or, even a friend saying it.  Those hurt the most.  They make my chest ache with the thought that they can somehow disconnect the words they're saying from people. My person.

 

 

While my daughter certainly deserves respect and dignity, she'll be the first one to hug you, and give you a good butt patting, whether you know her or not.  Whether you are kind to her or not. She is not afraid of your hatred. Your ignorance.  Your words that cut me so deeply that the only reply you can muster is snowflake. 
But, for this reason, I feel it even more important.  Her joy, her unrelenting grace, everyone should get to experience such beauty.  But, those that don't, those that are afraid of it, unsure of how to look disability in the eye and not see a reflection of their own imperfections, they will mock.  They will make jokes.  And, they, and the masses, will join together to make certain that those of us who speak up are the ones who sound like fools.

 

 

 

 

But, what they don't know, is that this little girl that crawled up on my lap, and fell asleep holding my hand, is the one leading me in love. 


riff raff

A few weeks ago a woman, a stranger, showed up at my door needing help.  The story is not entirely mine to tell.  But, I can tell you that the entire interaction between the police department and her left me breathless.  I am quick to stand in the gap for someone being mistreated.  And, that's the role I jumped into.

At the end of the interaction, one of the officers came back in my home to caution me against allowing riff raff in my home.  The woman I helped had just been taken from my home by ambulance with hypothermia.  The whole thing felt surreal.  But, those words echoed through my soul for days to come. Every time I remembered them, a lump welled up in my throat.  Riff raff?  Really, a human, in need of help, and what you saw was riff raff?

Tonight, I sat with my family to read a chapter from the Jesus storybook bible.  We light our advent candles, I read a story, we all read together Mary's song from Luke, then listen to a related song while the kids draw their interpretations of some part of the story.
Tonight's story caught my breath though, and the image of a woman in my living room flashed through my head.

"You see, people thought shepherds were nobodies, just scruffy old riff raff.
  But God must have thought shepherds were very important indeed, because they're the ones he chose to tell the good news to first."

When Jesus came, the first people God was like, 'hey, come look at my son' to were the riff raff.  They were the woman left in abandoned houses to die.  They were the homeless men and women we avoid eye contact with because we're uncomfortable.  They were those with cognitive delays that make us uncomfortable with their incoherent shrieks, and unabashed willingness to touch strangers.

I don't think it's because they had nothing else going on.  I think it's much more likely that Jesus' family were seen as riff raff. Unwed mother. Physical laborer for a father. Very few people are going to show up to worship the king of riff raff.  Unless you go and find others in that some lowly position.  They'll have ears to hear.  They'll have eyes to see.  And, they'll have no qualms falling on their face in worship since they aren't worried about position and reputation.

Blessed are the poor.  The riff raff. The outcast.  They're the first ones that God showed up to tell about His son.  They're the ones with the kind of life position where they are most willing to leave their job on a hillside to find Christ.  And, He seems to seek them out to make certain they know how loved they are by Him.  Even if so many people around them fail to see their worth.

Magic mundane.

Today we made cookies.  Just tiny and I.  He's been full of medical adventures of late.  He's currently without a cast for scoliosis due to pain he was having.  We have testing coming up in January to find out if the pain is caused by his spinal cord retethering.  We are waiting for insurance to approve (or deny) a very broad genetic test for him so we can give a name to whatever the things are that have caused his differences. He is getting afo's. And, a Boston TLSO for his scoliosis.  He starts growth hormone tomorrow via daily home injections. He's lost strength in his legs.  He's getting ready to turn three, and with each new year with him, I feel as if we are given more puzzle pieces.  More diagnoses.  And, less answers.
But cookies make the world feel normal.  Good.  Chocolatey.  So we baked.  And, we ate.  And, in the midst of feeling weighed down by the heavy things, normalcy is beautiful.  Mundane becomes magic.  And, oatmeal chocolate chip cookies become medicine.


*If you're interested in following our growth hormone story, feel free to find it on Instagram under #ashergrows *

 

 

 

 

Flour everywhere.

Trying brown sugar.

Adding chocolate chips.

Eating the ones that were spilled.

Ready to bake.

Eating chocolate chips while we wait.

Still warm.

Mmmmmmm....cookies.

Grace upon Grace.

I ran along next to the river all the while going through the same thoughts in my head that loop through it quite often, all directed to God in an accusational prayer like fashion:
     I don't think you give people, children, specifically, my children, hard things.  I don't think you chose for them to have all of this medical crap.  I don't think you picked Jason and I out of all the parents and thought we'd be amazing at this.  But, I think you knew it would be like this.  And, I'm not sure why you didn't intervene.  Are you able to?  Do you really change circumstances, ever?  It's been eight years of asking this stuff.  Am I always going to be asking it?  Will you please just give me an answer of some sort.

I took a deep breath and looked out over the water, waiting.  Hoping.  Something.  Anything, at this point.  Please.  And, then I heard it. Or, thought it.  Those first few words from a favorite verse. 'Grace upon grace.'

What?  What does that even mean?

 'You are welcome to keep asking.  You might ask for the rest of your life.  There's grace for that.'

What if my faith is never the same as it was before?
'That's okay. Grace. There is so much grace.'

I drank the idea in.  I just kept gulping it, wanting it to fill me up.  I'm allowed to be in a place where I have no desire to speak in absolutes, continue asking questions, and God will continue to give me favor.  Favor that I did nothing to earn.

Over the months since I stood there in that spot next to the river, I find myself wanting to pour that same grace out on others.  In words.  In deeds.  In the way I live and love.  I find that the more drinks I get, the sweeter the taste of it all, the more I want to share it with others.  I feel full of it.  And, interestingly enough, the verse says that it's from His fullness that we have received grace upon grace.  And, it seems once we receive those things, we now have a fullness that causes us to pass it on.


So grace to you friends.  May you be filled with the favor of the one who loves you, just as you are, at this very moment.  May you know that His love is able to handle your anger, questions, joy, and sorrows.  May you know Him as the loving creator who loves you simply because you are.  And, may you experience grace upon grace.

Raising girls.

My big asked all of the questions by four years old.  And, as is my parenting philosophy, I answered what she asked.  As she grew, and we had repeat conversations, I actually appreciated that there was no scary looming 'sex' conversation.  Just filling in some of the gaps as she continued to grow and learn.

Even with those conversations.  Even with our absolute certainty that our children understand and respect body autonomy, and know what all of the parts are for both sexes, I wasn't prepared.

My nine year old tells me everything.  Every. Thing.  I love it.  I'm so thankful she feels safe sharing things with me.  I hope that it means as the conversations begin shifting from someone blocking the slide at recess, to bigger things, she still comes to me.
So yesterday, she did just that. She shared the story of a boy from her class not respecting her body autonomy boundaries.  It wasn't anything that could qualify as more than obnoxious, but we talked again about why it's okay in those situations to be more bold than normal.  And, then she told me that when she tries those things he responds with, 'it's because you hate me isn't it?'
I held my face and my voice steady.  But, inside, I was seething.  A third grade boy is already using emotional manipulation to attempt to get a female to accept unwanted touch.  Third grade.  It makes me feel so scared.  I feel completely unprepared and inadequate to navigate the things that lie ahead for my daughter.
We talk about strategies.  We talk about how emotional manipulation is wrong.  And, then the story continues onto her sharing a conversation he had where he made inappropriate sexual jokes to her.  I continued to markedly keep my face and voice from revealing my feelings.  It was an in the car, on the way somewhere conversation, so it couldn't go deep.  I told her to let her teacher know.  Then, I sat on it for 24 hours.  It seemed small.  I mean, it's likely the boy didn't even know exactly what the things he said meant.  I knew Big didn't fully understand.  But, I kept arriving back in my head at, 'This is the first time.  How you handle this now sets a precedent for everything like this moving forward.'

So I sat down tonight and told her:
This was not okay.  It's not okay for anyone to talk to you like that, or make jokes.  I'm really proud of you for letting your teacher know.  If it happens again, I want you to tell your teacher, and us.  We will work with your teacher, if it continues, to make certain it is handled well.  You are also allowed to use loud and angry words in response to anyone talking to you that way.  I have had people talk to me that way as well.  And, while I would love to tell you that it won't happen again, it will.  So it's good that we're talking about it now so we know how to deal with it in the future.
But, most importantly, some people might tell you things like, 'Oh, that's just how boys talk.' or 'He didn't mean anything by it.'  That's not true.  That's not how boys talk.  And, we proceeded to name all of the guys we know who do not talk like that. 
When she shared the story with Jason, and he said, 'I'm so sorry he said those things to you' she responded with, 'It's okay.'  And, like the incredible man, husband, and father that he is, he said, 'No it's not.  It's not okay for him to say those things.'

It's easy to think this is blown out of proportion.  It's easy to write the behavior and words off as typical, or too young to really understand.  But, this lays the foundation for so much of her future as a female.  She's nine, and experienced blatant sexual harassment for the first time.  Nine.  I'm thirty five, and it hasn't ended for me.  In a world full of excuses for men who treat women as objects, use their bodies against their will, and speak ugly things against our being, I will have the hard conversations with my nine year old.  I will call things for what they are.  And, I will set the precedent for her now that she NEVER has to tolerate being mistreated because she's a girl.  And, I will hold her hand as long as she will let me as we navigate the times ahead where this happens over and over again. 

One.

I remember that morning.  Walking downstairs, pulling out the last pregnancy test, and for my own peace of mind, peeing on it.  The results read positive immediately as the liquid soaked across the strip.  I had never gotten a positive.  In our almost ten years of marriage, and countless test, there had never even been a possible hint of a second line.
My whole pregnancy, I resisted the urge to take more test. Just to see it again. I wondered if I'd ever have another positive test, or if we'd go back to 'unable to get pregnant.'  It didn't end up mattering because we made the permanent decision after things went horribly, to prevent any future pregnancies.  The risks for my life and our sons were too much for us to take again.

That test. That one and only positive pregnancy test, it resides in my underwear drawer. I still look at it occasionally.  I try to figure out how I feel about our whole journey.  It's such a mixed up thing that I can't think on it too long. Most of the time.
But, even with the aforementioned permanent procedure, I know there's still a small possibility.  Occasionally, things will play out and I'll get anxious enough to take another test.  And, every time, despite logical me wanting it to be negative, I whisper, 'Be positive, be positive.'

For a long time I refused to call myself infertile.  And, I certainly didn't struggle with my infertility.  It just was. We were content with our children being adopted.  I had long since stopped wondering what it might be like to have biological children.  It didn't matter to me.
The whole and honest truth is that in the parenting, the day in and day out stuff, it doesn't matter. They're all amazing, and silly. Maddening, hard, and wonderful.  They each come with their very own set of incredible gifts and challenges for us as parents.

So my longing is separate.  My longing is for that of feeling like I finally belonged as a woman.  I didn't feel excluded before so my words may be hard to completely understand.  But, it's the best I can do with the words I have available.
If I'm completely honest, it's the longing to redeem the things I feel like I still missed out on.  Asher never had hiccups in utero that I felt.  He never woke me up moving or kicking.  The further along I got, the less I felt him move (likely from his small size, my ample fluid, and his low muscle tone).  The birth. Even if I could just be awake and have my husband in the room, that would be enough for me.  To hear his first cries.  To see him still connected to me through his umbilical cord.

So I keep that test.  I moved it to our new house.  Jason asked about it.  He thought it seemed weird.  And, a little gross.  It is.  I know this.  I hope that someday I'll be able to just take a picture of it, and throw the actual plastic test away.  But, for right now, I need it.  I need it tucked in that drawer, reminding me, that even if it was only that one time, I didn't carry the label of 'infertile.'  And, when my heart longs to do it again, as it occasionally does, I can look at it, hold it, and grieve the way things went. I can wonder for a bit if things hadn't gone so wrong, if we might have gotten to experience it again.  Then, I can tuck it away safely, with all of my other hopes for what I wanted things to turn out like, wipe the tears, and move on with my new set of hopes and dreams.

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.
 

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.



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. 

Words.

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

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

My drug of choice.

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

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

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

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

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.