Sunday, February 25, 2018


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.

Thursday, February 22, 2018

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.

Saturday, January 27, 2018

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. 

Sunday, December 17, 2017

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.

Friday, December 15, 2017

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.


Sunday, December 3, 2017

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.

Tuesday, November 14, 2017

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.