Wednesday, September 4, 2013

on raising a kid with some special needs

Note:  I wrote this on September 4, 2013, but hit "save" instead of "publish."  On that day, it was a little too raw and a little too real to share with the world.  But tonight, January 27, 2014, while going through old blog posts, I ran across it and decided to let it out.  :)  I want to keep things in chronological order, so the date above is the day it was written, not the day it was made public.

When Luke was born, the shock of his leg was like a gigantic boulder, sitting on my chest and covering my eyes and crushing my head all the time.  It was weighty.  It was blinding.  It was consuming.

It was terrifying.

I have since been able to move that boulder and I am able to breathe, see, and think a little more clearly.
Let me explain.

Luke wears an AFO all day, every day.  And yet, I hardly notice it's there anymore.

Sometimes when we're out and about someone will ask me if he "broke his leg" and on several occasions, it's taken me a moment to realize what they were talking about.  His AFO is part of his body to me.  I don't think about it being different or even visible.  I see him, not his leg.

We have a team of a physician, an orthotist, and a physical therapist that we love and that we can call anytime for help.  These folks are instrumental in rolling away that boulder, allowing me to focus on being Luke's mama, and not his medical team.  I can breathe a little easier knowing that I am not in this alone.

And we have the amazing, unbeatable, unfathomable support of family to help us when we need it.  Our family has helped financially, emotionally, and practically so that Luke has everything he needs in order to get through this.  I can think about this situation without worrying about how we will make it through.

But there are days - here comes the confession - when that boulder comes right back.

An incident or an instance or just a moment out of seemingly no where when I cannot breathe for the weight on my chest.  I cannot see for the rock over my eyes.  And I cannot think for the challenges that occupy every part of my brain.

The last twenty-four hours have been like that for me.  Luke started having problems last night and our family drops everything to get him to the med center today for an appointment with his specialist.  We are being worked-in to this clinic and worked-in to that one because a two year old that can't walk is a big deal.

I was sitting in the orthotist's office today, looking at my son, and there it was.  The boulder.
One shoe off, one shoe on.  Chowing down on Nilla Wafers.  Waiting to be cast for a new AFO.
I looked at his face and couldn't hold back the tears.
This boy is my hero.  He is absolutely amazing.

Many will have more trouble in this life than Luke.  This is not a pity party.  It's not a sob story.
But there are few toddlers who have walked this road.  No pun intended.
He is so brave and so strong and so incredible and he doesn't even know it.

He looked right back at me and I think he realized that this was a weighty moment.
"I okay mama."
I know, buddy.  I'm okay too.

I am okay because I trust. 

I trust the Lord in our lives.  I trust His will and His provision and His love.  I trust His mercy and His grace.  I trust that He is enough.

God did not make a mistake when He formed my son in my womb.
This road we walk, this boulder that hits me square between the eyes -- this was not Plan B.
This was God's will for us!  His story for us!
It was his very utmost incredible best for us.  And I trust that.

I trust that I am not alone.  That we are loved by a God who would never leave us.
I trust that I was meant to be - made to be - Luke's mama. God gave Luke to me on purpose.

It's easy to hold on too tight.  For me to let that boulder entrap me and make me feel like I have to control every second of every day like this one.  For me to feel an overwhelming urgency to fix this.  It's easy to let the heaviness crush my ability to trust Him.

But the love that I have for my son -- it is a gift from God.
The support of our family -- it is a gift from God.
The medical team -- they are a gift from God.

I have seen over and over and over how God provides and cares for us.
So I will choose not to let that big damn rock get in the way of my trust.

I will be a witness to my son so that he can see me trust God with his leg.
There will come a day when he will trust God with his leg, too.
May I be his example.

I am no saint and this is scary.  It can be terrifying, really.

Luke has an appointment on Friday and I have a feeling that we will get some news that will be hard to swallow.  If not Friday, there will be a day in the near future when I will leave that doctor's office struggling to trust God with my son.  But that's okay because the harder it is for me to trust Him in this, the more I will have to trust Him in this.  And the more I will have to trust Him in this, the more I will know His unfailing Love in this.  And the more I will know His unfailing Love in this, the more I will know Him.  Amen.

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