a Rearranged Life

A 7-year-old kid with a bright mind trapped in the body of a spastic quadriplegic…and a mother with a love for nature.  How to make it happen?  How to explore her love or nature with her 3 kids?

This is a question I dared not flirt with.  But there has been a distant hope. I hardly knew what it would look like.  I barely dared dream.  The possibility has seemed as if it lay beyond the further horizon at times.

HOPE

It’s a darn tricky word….”a thing with feathers” according to Miss Emily Dickinson.

I’m inclined to agree.

Completely unaware, I’ve been in flight from grief to hope to joy in this journey.

ALWAYS GRANOLA

Before I begin, I should explain – I’m a bit granola.  I grew up on organic food, grown in our back yard. I love the outdoors, even if I’m never actually doing the sort of thing you see featured on an REI ad.  Charlotte Mason – totally up my alley!  Her words resonate through the centuries to me.  Learning about local plants, birds calls, wildlife, etc?  Learning how to explore?  How to express themselves?  Yes, please!  Whether my go to school or not – my main goal in their education is that:

THEY LOVE TO LEARN

AND that they have an appreciation for the outdoors, brimming over with creativity and the desire the explore and create.

What good is knowledge crammed into a child if they do not like it?  …if they don’t desire to learn?

These ideas, and the desire to create and explore alongside my children – it’s somewhere deep within me…and likely all of us.

THE DARK DAYS

I can’t quite explain to you the dark days.  They weren’t all dark.  Flitting shadows and shards of light came in.  But there was much grief.

It was a time to mourn.

The heart takes time to count loss.  AND there must be a shifting point…or the counting begins to rob you of life.  The heart can go on counting negatives to it’s own destruction, or it can switch gears and discover precious positives that can only be found in the shadows of grief.

Thankfully, somewhere along the way…somewhere on this treacherous journey, a shift occurred for me.  Looking now, you might think that I always had a happy song, but you’d be wrong.

There were days and the ER when many people tried to share hope, and it was just a feathery annoyance when I was trying to mourn.  Stories of happy people with disability were far beyond my reach.  I lived in the days of baby screaming, shaking, struggling to eat, counting vomiting episodes by numbers per hour, doctors visits by # per week.  I survived.  God truly brought me from one minute to the next and gave me some moments with beautiful friends along the way.

As I’ve paled over the years, vitamin D deficiency and all. I’ve mourned unmet expectations of how my children and I would interact, and I have adapted. …and sometimes I’ve dared hope.

I actually began to read Charlotte Mason after I had Blue.  I plugged through the pages hoping for divine inspiration on HOW to interact with my child.  I had no idea how to juggle the tangled wires of old tech that is often used in the special needs world (something I’m still working on).  (FYI, when I say I read these CM books…you should know that my definition of reading often means reading the first 100 or so pages of several books.  Who ever finishes what they start?  – not this girl!)

The SHIFT.

Now, I write to new parents, dealing with KI.  I recall the days when my boy couldn’t see, couldn’t hear, couldn’t eat, … the list of couldn’ts could fill paragraphs.

This shift, has unfolded in pages and prayers and tears and years and, one wild adaption and out-of-the-box idea at a time.

I hardly knew it was happening, and now I look back and see the pages.

Page 1 -TV

Then we discovered the TV.  I know, I know!  It sounds horrible!  HORRIBLE!  But listen for a sec.  You have a smart boy with every sort of physical of impairment and barrier between him and the world.  He cannot reach out to touch what he longs for.

So one day, “Baby Einstein” happened.  A slow progression of toys and classical music.  He was captivated!

HE COULD SEE!

Prior to that, we had NEVER seen him look directly at anything that he wanted to look at…including US.  (This, along with staring at lights etc is a symptom of cortical visual impairment.)

So this TV thing, it grew as did his vision.  It was a motivator.  Educational books on video, different engaging stimuli at a slower pace…he not only began to see, but to interact with his world!  This all began to happen around one year when the awful falling/spinning sensations that stemmed for serious issues with vestibular stability began to normalize.

As the years have gone on, the TV has been a means of engaging, motivating and educating my son.  We even did DVD home school one year and it was a huge hit…because the boy LOVES to watch TV.

2 – A Surgery

2 years later, HE COULD HEAR too, thanks to a cochlear implant!  He began to understand spoken language and laugh not just at slapstick humor, but things we did too!

After a while, with 2 typical girls watching far more TV than I would wish, educational or not, I started to despair again…just to feel a little helpless to accommodate all of my kids needs.

3 – Plopping down – without a plan

Last summer we began to venture outdoors.  But how to get around in the yard???  What could he do??  There is too much of a slope to work for the gait trainer or stander or a power chair when we are lucky enough to try one…  I felt lost.

What COULD we do?  I didn’t have the energy to chase the girls…and carry a 60lb boy in constant motion.  He couldn’t help me plant.  In a step of faith, we began to pull the cushion off the papasan chair and SIT.

What could there possibly be to see in 1/4 acre of grass?

Well…  It takes another set of eyes to see it, and they don’t always open rapidly…or at least they didn’t for me.  But bit by bit, we saw things growing, a toad, a lizard, a large bug, the feathery clouds floating by.  My boy loved the sky.

…it took being still…being willing to sit outside and hope that we could find something entertaining…nothing planned.

It wasn’t easy for me, and I didn’t do it every day, but each time we did, I wondered how I had doubted that we’d be occupied.

The Bats

This spring we discovered some bats that like to fly between tree tops at dusk and my boy and I could lay there watching them for an hour while the girls ran wild.

A Good Deal

THEN, Barnes and Noble had a book that looked like it should be $100 for $20.  I love books, and I especially love a deal.  This deal had illustrations and a built in bird call player for 100’s of birds.  Who knew that a $20 book would clue me in to an incredible gift? …a gift that had been there all along.

My husband had fed birds with my son for years, yet somehow I was oblivious to the birder within.  I loved how Mason’s schooling goals included bird calls and identification.  TOTALLY UP MY ALLEY.  But….WHERE TO START. I didn’t know the first thing.

So I bought the bird book, and it sat.  AND it sat…for months, under a stool.

One day, I finally pulled it out.  We played a cardinal call and a cardinal immediately flew within 3 feet of my son.  Blue nearly JUMPED out of his wheelchair! (He really does practically stand in his wheelchair when excited.)  I was introduced to a love of my child!

A voiceless child, had voiced his love for something.  It only needed opportunity, opportunity that evolved over years.

Now, a couple of months later, he usually chooses to sit on the porch over watching TV.  Blue is able to distinguish different bird calls.  He’s working on a field journal in powerpoint, using his communication device.  He’s spotted over 2o species in the past 2 months, and he’s pulled his mother into a little addiction too.

I’m his “binocular” operator.  Given that he cannot use binoculars, I use my camera with a 500mm lens, and together we spot birds.

We capture and release.

We share something in a way I never would have expected.

We bond.

My heart skip a beat to share this joy – to hear his voice!

And I say – YES – hope is a many feathered thing!

Thank you Lord for giving me joy in something I barely ventured hope…for hearing prayers that mixed with tears and for opening the eyes and ears of my son and I both!