Monday, April 4, 2016

 {Break Me to Better}

I remember when I was a child I felt strange to be around people who were "different".  Physical limitations didn't really make me uncomfortable, but I wasn't sure how to respond to those who had mental issues.  I had a cousin whom culture would label "different".  He was a child-like young adult.  Mostly he was fun, but every now and then I just felt unsure of myself around him, so it seemed easier to just not deal with those emotions and stay away.

When I became a mom in a rather scary way, 3 months before I was "supposed to",  I was immediately thrust into a life that consisted of medical information overload.

The boys were micro preemies.  They were dangerously early.  The list of things that could go wrong with them was extensive.  I tried to take it all in and adjust expectations of the life I thought I would have.   That's kind of too much to do in a few days time....  But oh my little quivering heart tried to stand tall and do just that.

I knew immature lungs were at the top of the major concerns. So I was trying to wrap my mind around ventilators, trachs, surfactant, and oxygen saturation.  In addition to that we knew that fine motor and gross motor skills were greatly compromised by the boys' muscles missing out on the growth and building that needs to happen in the last 3 months of pregnancy.

Having a child that may have breathing struggles for the rest of his life and possibly never walk or be able to ride a bike were very real possibilities.

And I thought I could probably do this.  Yes.  We would study up on how to help as much as possible, and get used to what that would look like for us.

Yeah - we could do this.

And then K had a brain bleed. And a whole new world of medical professionals and scary possibilities entered our life.

I remember sitting in a neurologists office with my tiny baby.  Just a few months old.  He was cute and cuddly.  Doing surprisingly well for all he had already been through.  While he was on a low flow of oxygen, his lungs were doing incredibly well.  We had started occupational therapy for fine motor skills and Physical therapy for gross motor skills.  While he was responding well to all of this,  neurological questions which no one could answer were creeping in.

Would he recognize us? Would he speak?  Would he be able to form any kind of intellectual skill sets?

To these and so many more questions the resounding answer was "wait and see".

I didn't want to admit to anyone that these were the issues that were like kindling to the  fear fire smoldering deep inside of me.

I would sit in these offices of various brain doctors and observe a lot around me.  I would see other babies like mine. 

"I bet they are hearing a lot of "just wait and see" too.." 

We would exchange little smiles and grasp any solidarity we could find in our tired selves. 

But then I would see some older kids.  Some teens.  Kids in wheel chairs - some drooling or moaning.      There wasn't solidarity because this was something I didn't know at all.  Something that scared me.  A foggy possibility that loomed in my future.  I felt something in the region of the fear fire.  I didn't know how to identify it.  Subtle waves of cultural influence would blow on the embers of that fire - and the flames would sometimes just rage.  But I couldn't really talk about it. 

"How do I do this?" 

"I don't know how to parent like this." 

"I'm lost.  I'm afraid.  I never asked for this."

And then there would be guilt.

I know my God sees our potential.  He sees our hearts.  He sees our biggest fears and hesitations as potential places for sin to settle into.  So he swoops down and rescues us - sometimes by pulling those fears up and making them our reality.  He does this in order to  make them impossible to harbor that which He knows is not for our best.  




He knew I could do better. 

So he gave me a child with mental, emotional, intellectual, and physical struggles.  

And he called me blessed. 

Everything was different when he was a baby.  Cute and little.  Potential untapped.  "Wait and see".  

While wait and see may still always be a bit of a mantra when it comes to our K, he is now 13.  We see.  Maturity will take place, and changes will continue to happen.  But we see  - him.  

See my eyes? My face?  I believe my feeble heart, held in the hands of my all powerful God, shows there.  I am parenting some of my deepest fears.  And this young man has forced me to be braver than I thought I could be. 

I know my parents desire was to raise me in a counter cultural way.  They knew "culture" was devious, fickle, and a lie.   But it still sneaks in.  It whispers its way in like a tangled web of something unrecognizable -  that soon begins to resemble truth. 

I'm fairly certain I would have succumbed to several of those lies if I were not K's mom.   While I have always considered myself pro-life I'm not sure I valued as a beautiful creation formed by a God who makes no mistakes. 

What a privilege.  What a privilege to start each day needy and desperate.  To peak behind the curtain of culture into the realm of eternity and truth.  

This guy shows me.  He teaches me.  He keeps me grounded and humble.  He shows me my limitations and God's power.  

And as he grows and learns more about his own struggles he keeps my heart soft and broken.  - And I am learning that is not all bad.  In fact a soft heart - willing to be shattered for purposes beyond my own agenda has begun to be a hesitant but bold prayer of mine.  

He prefers things very structured and clings to routine.  When things happen that are out of his control - and this happens regularly in a family of 6 - he melts.  It's the only way I can explain it.  I watch my sweet boy just melt away in a puddle in front of me and he goes to a place where he can not be reached.  It literally breaks me.  And that's ok. 

Brokenness has value.  - Just one more thing he's taught me. 

It is during those meltdowns that his realities pour out.  He isn't one to talk a whole lot about how he feels about things during day to day life.  He's getting a lot better about asking for help when he needs it and advocating for himself, but we never quite get a glimpse into his head and heart like we do when he has a melt down.  

"I can't do anything!"

"I am invisible!"

"I'm never going to be okay!"

"I'm afraid."

"I can't do anything for myself!"

And so much more.   So much that has helped me to see, really see, what it is like to be someone who does not have all of the advantages that I have.  

And I need to see that.  

I need to feel that.  

It is so hard to feel that.  And oh do I ever need to.  We all need to.  

I sit and hold him and I cry with him.  I wrap him in a blanket.  I feel helpless next to him.  And I cry out to God on his behalf.  

Among all of his diagnosis {which really mean less and less each year...} is autism. It hasn't changed a whole lot. But it has helped us figure out a few of his responses and form some helpful ways to deal with those responses.  Saturday was national autism awareness day and I gave myself a special "jamicure" in honor of the way our family dynamic has been shaped by autism.  

Puzzle pieces.  

Pieces of my heart.  Pieces that don't exactly fit together in any logical way.  

When I look at my hands I smile.  My boy has my heart.  I'm so glad.  I'm so glad that he has personified some of my fears and shown me an immensely bigger picture.  

1 comment:

sara said...

Wow. Wendi that was a beautiful post. Thank you for sharing your heart!!