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.