a Rearranged Life

I won’t lie. I’ve chased friendship and fallen flat on my face.

She stood in judgement against a decision.  She told me that our friendship had been…an undue burden.

Knife sliced deep. 

And this, this is only one side of the story.  I am no perfect friend.  I have no filter.  I openly share thoughts and opinions.  She always seemed fine with my wild candor.  Maybe I was oblivious.  In the end – I wonder if my words hadn’t been slicing away at her.  

The timing of it all amounted to months of relative solitude.

I had forced something that wasn’t meant to be.  I was a leaf, wilting in hot sun.

Falling flat on my face – it left some scars, some real scars. It also helped me slow down.

“Let him sit alone in silence.” Lamentations 3 (the expanded passage is well worth your time!)

I sat in silence. I wept in silence, and then I sat in silence some more.

When you walk out of the ICU with a child that has been altered for life – they don’t hand you the boxing gloves you’ll need, nor do they tell you that friendships won’t come easy. Would it help?   Would it change the fact that living with special needs is often a life-long grieving process. Heck, life is a life-long grieving process…we lose things and people we love.  There is much pain…way too much pain!  

 Seeing the Invisible Fence. 

You know – the kind that shocks dogs?

I got my first glimpse when my heart-friend Molly told me that the IV pole in my living room used to freak her out. How did I not see it? Oh yeah – I was trying not to drown in the ocean of my child’s immense needs.

Another sweet friend once told me that our interaction was great for her and it had forced her “beyond her comfort zone.”

beyond.  her.  comfort.  zone.

Wait a minute! One gosh-darned minute!

My house is void of a comfort zone?!!!

Yep.

A barrier between my already-not-so-perfect-self and friends?

Check.

Now, don’t get me wrong.  These two friends are super precious to me.  I am very grateful for their honesty. They had the guts to say what everyone else felt, and that I was completely oblivious too. 

They didn’t build the fence.  They pointed to the fence that had just come over – the one that had given them the jolt.

It wasn’t them that made this hard.  It was, it is…GOD – “author of all things,” “omnipotent,” working-all-things together-for-the-good-of-those-that-love-Him-and-are-called-according-to-his-purpose-GOD.

The feeding pump, the wheelchair, the kernicterus (KI), the cerebral palsy (NOT my boy) – but these things that surround him…they are the barriers.  I wasn’t familiar with them before either.  Pre-KI, did I know how to hold a conversation with someone who couldn’t speak? I’m not sure I did.

So….there must be something bigger going on here.

In all of my oh-so-lovely whining, I remind myself of childbirth. When I hear of other special needs parents who feel like they just. can’t. do. it. anymore. …I’m reminded of the “emotional signposts” of labor.  The Bradley Method teaches that the surest way to know when the baby is coming – when the mother is most ready to give up in “transition.”  It’s not about inches dilated etc…they say these “emotional signposts” are more telling.  So, it’s when you are really ready to throw in the towel that you are closest to actually having this beautiful baby.  I’ve actually been through this 3 times, and knowing the routine, didn’t make me any less ready to give up.  I fell for it – every time.  Every time, I wanted to hang it all up…forget about the whole thing, but of course, I couldn’t! 😉

We say, “How long?”  One day it really will have all been a blink.  I remember how that hour of pushing seemed like an eternity! …but it wasn’t.

This is not eternity.  Not yet.  This is one day at a time.  One opportunity, one moment at a time.

Whether it’s wheelchairs, suction machines, feeding pumps, odd movements, behaviors, or anything that makes one different – it makes an invisible fence around them and the people near them. Only those willing to take a little jolt may pass over.

And yes, in realizing this, another layer of my denial was/is peeled back…another way in which our life is “special” in a way I never wanted it to be.

DENIAL – that thick nasty wallpaper that I’d rather leave up than deal with.  It’s been there so long I don’t notice it…and there are always more layers.

The same thing happens when the wheelchair is widened, or I buy the next size of clothes, and he’s growing into a man and still unable to sit or speak.  Sometimes it’s a twinge, other times it’s a wave – bits of grief as we grow. It happened when we got our first handicap accessible van. There was the joy of the convenience, but as always, there was the grief. When your life takes a big hit and disability settles in, grief comes in waves and stages. Ready or not, they come. Ready or not, they hurt.

George MacDonald says it so well.

Thus some of the deepest, purest wells of spiritual life, are, like those in old castles, choked up by the decay of the outer walls.

Hooray for friends that the jolts / scale the walls!!!

They venture beyond the fence/walls – they see a glimpse of the beauty and wonder of this place where my son is…this place where the little things are to be celebrated – where smiles and sounds and movements bring joy.  Even in the midst of our trials there is much to savor.

When you have a special need it’s not always as simple as reaching out and loving the people around you. Sometimes it might just not work out. You fall flat on your face here and there.

As for that silence – The special needs life can be full of isolation. We are often at places that others around us can’t relate to or understand. But you know what? – I’m starting to think that silence…maybe it’s not all bad. It’s in the silence that I hear HIS voice best, that he can come in as friend. Maybe…maybe when I’m not content with it – maybe I’m every bit the desperate girl-friend that won’t stop chasing other things that don’t fill.

Our savior was a man of sorrows. He was acquainted with grief.

He knows the pain. He knows the isolation. “Ask of Him.” He is the friend I need…the one and only and best friend to have in the silence.

The more I accept this, the more I find rich friendships blooming around me, not because I’m chasing them, but because I am more satisfied in Him.

Our church has talked a lot about outreach lately, and it has occurred to me that in order for good giving to take place I must:

• know just how good we have it – how really blessed we are
• be okay with isolation
• know that He fills and let Him
• not wait until my heart are perfect
• sometimes it takes the act of giving – to start Growing

On a hot day in the summer our squash leaving bent low for wilting. My 4-year-old asked me, “What makes the leaves stand up?” I told her, “water.”

Like a flood, conviction begged – “Living water: what does that do?”

Living water can make me able to stand – to overflow into others lives.  It fills to overflowing.

When the giving isn’t going so well…when I’m feeling depleted…when I’m feeling alone – I am wilting.

¹³ Jesus answered, “Everyone who drinks this water will be thirsty again, ¹⁴ but whoever drinks the water I give them will never thirst. Indeed, the water I give them will become in them a spring of water welling up to eternal life.”

–John 4:13-14

Lord, this Christmas, and every day – help me to stand.  Fill me.   Help me to abide – to overflow, right over these fences!  There are no barriers too great for you and your love!