Sunday, May 20, 2012

Do You Really Want to Know????

Timelines. Life Lines. Picc Lines.  Blind Spots.  Blind Landings.  What do these words have in common? These words tell stories in my life.

When I want to write, or should I say "must write", it is usually the same way a song writer might have just a couple notes stuck in his head and he doesn't know where they are going until, after hundreds of replays, they become free and create a song.  

I have a blog because I must write, and the sad part is I usually find lots of other things to do, plenty of other noise in my head and I tune into it because it helps me ignore what clamors to be said.

I avoid the writing because the writing makes it all too real and unavoidable.  As long as the words are just random and unrelated and bouncing around in my head, they do not become the song or the story I have no choice but to acknowledge. 

However, ignoring the words does not give me comfort.

 Then there comes a time when there is no peace to be found by keeping the words to myself.   The song creates itself, and the story, even if terrifying is a story worth telling.  Or, at the least, there is the hope that by releasing the story, some of it's energy will leave me.

It may come as no surprise (now) to know my first elective in college was titled, "Asian Women Studies".  I can't remember why I chose it, but it surely was not because I thought it related to my life in any way.  At that place and time, I didn't even know an Asian woman to call friend.  Yet I read all the books, took all the notes, and did a final project on Women in China, specifically the new One Child Policy.   I took it all very seriously for no other reason than a grade.

I never considered I was learning something destined to impact my life almost thirty years later.  I never considered it was so much more than a grade from a professor. My limited life experiences gave me such limited vision, I could not even imagine what was to come to me.

When my third daughter was born twelve weeks premature, I learned about living with huge uncertainty, I learned to trust the unknown, and I learned survival mode.  I was completely centered on keeping one small being alive and not in any way aware I was being prepared for other times where survival mode ability would be important for, well, survival.

A few years later I entered a business involving educational toys and software, for my own benefit, never seeing that I was learning how easily I could teach my own children and not seeing the coming change of homeschooling and how it shifted the focus of our family from seeking acceptance from the outside world to creating our own social system within our home.

Many years later, a Letter of Intent, a beginning piece of adopting through the China Waiting Child program, asked me why I felt qualified to parent a child with special or unknown needs, and I realized I had been preparing for this all along.  It was easy to believe I could do it because I had been on this path for so long.   

Everything made sense.

And then it didn't.

Suddenly my life felt like a train speeding down a track, knowing the bridge was out, but unable to slow down.  I'm still on the train, but we are stuck in slow motion free fall..

I have a child with a chronic disease.

I have a child with constant pain and anxiety, for whom all pharmaceutical mixtures have failed. 

I have a child who struggles to eat a bite of food, who can no longer read, and suffers from tremors, and a long list of other symptoms no 17yo wants to deal with.

I have a child who knows that no matter how bad or scary her symptoms are, going to the hospital will not help her.   

I have a child with Chonic Late Stage Neurological Lyme Disease.  

The politics of this disease are as scary as the symptoms.  The politics are the reason we have to travel seven hours for her to receive appropriate care.  The symptoms are the reason we live in a heightened state of fight or flight.

In rare moments of calm, I understand all the ways I was also prepared for this experience.  When Cami and Delilah came home to us from China, I learned about trauma, sensory issues, the effects of heightened or lowered cortisol levels.   Everything I learned through adoption has helped me understand at least a little the daily hell Jillian lives through.  

And even while I understand I have been preparing for this my whole life..... I do not feel ready.  I do not feel worthy.  I do feel thankful for the little rays of sunshine God placed in our family to help ease the suffering simply by being six year olds..


We are barely getting through the days here.  And it is taking every ounce of energy in every cell of my being to hold us all together.... even though I know ultimately I cannot do even that.  

I am trying to breathe.  Trying to ease the tight ache in my chest.

Trying to find the niche I had carved out in survival mode but I seem to have lost my way.

I'm searching for peace.

I am trying to crawl out from the blanket of depression, anxiety and fear.  I am searching for the light.

And I do not want to consider what I might be preparing for now................ 


Suz said...

You put tears in my eyes. I often think of your family's challenges and send strength and support to you. Amen, sister. That old joke about god sending you what you can handle. Hey, that is one hell of a lot of trust!

LisaBW said...

Oh, Sherri. Big hugs. Big prayers. Sweet Jillian...

sueb said...

Dear Neighbor,
How can I help? I can come over any time!!!

Marmee said...

{{BIG HUGS}} and prayers!

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