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.