Thursday, July 13, 2017

Untitled...

I have had a lot of time to think about what to title this post.  I'm still undecided.  Here are some options...

Testing...
This is just a test.
Full Circle
Redemption
The wonders of God
Missing pieces
Borrowed Time

Shelbie had her neurology appointment yesterday.  About a month ago, a nurse called to tell me our neurologist wanted to see Shelbie.  That has rarely happened, that a doctor calls me to see my kids, so there was no hesitation in my response.

We waited over an hour and a half for the doctor to get to our room.  We kept occupied with Snapchat filters, GIFs and stupid Memes.  Everything seemed funny but I had the worst gnawing feeling that all that was about to change.

The doctor came and in said, "So, how are you handling this latest development and do you have any questions about Epilepsy?"

She was talking a mile a minute and describing in detail how she arrived at this diagnosis.  "Any questions?"  She paused to ask.

I remembered one time, I was on a hike and the side of the mountain was feet and feet of loose shale.  I remembered that feeling of trying to claw my way up but never quite making it from the spot I kept sinking to.  And in that moment, I was clawing my way out of her words to find something solid to hold on to, something that had more undertones of hope than the word Epilepsy.   I remember looking at Shelbie as if from the wrong end of a telescope, though her face was less than a foot from mine.  Her eyes fell distant across the room. We both struggled to stay in the moment.

I looked at her with the most intent look of wonder, "I'm so sorry!  I don't even know what you are saying right now! What are you talking about?"

There has been a glitch in our MyChart.  She sent me a note after she had held a special meeting with a selected team of Neurologists who all specialized in a different part of the brain.  They all reviewed Shelbie's scans from the past year.  They all had time to make their own assessments.  One doctor realized that no one had checked the volumes of the Hippocampus.  He took it upon himself to do that as well as study in more depth, her PET scan from last March when they thought she had lymphoma.

That is where the evidence was found.  She has asymmetrical volumes in the Hippocampus...the deepest part of the brain.  This is the tell tale sign of deep brain seizures and explains why the EEG is always normal...it only measures the first 1" of brain activity.  There were hypersensitivities as well, indicating that brain damage has occurred.  He confirmed a large benign mass in the left temporal lobe, a couple of enlarged lymph nodes, what they think is an AVM- venous malformation as well.

Our doctors note to me explained all that.  I was never notified and even going through all her charts, the note was never there in MyChart.  So, she thought we had already been living with this news but it was a complete shock.

Shelbie has not had strokes or TIA's, she has been having seizures.  They suspect that she is having multiple seizures a week, even a day.  The episodes when Shelbie is awakened in the night, unable to breathe is a seizure with loss of consciousness.

So...It's been a hard day.  I can't even bear to say the 'E' word.  Technically, her condition is called Complex Partial Seizure Disorder.  They happen in the Hippocampus, the area responsible for respiration, heart rate, memory, co ordination and the autonomic nervous system.

This, in and of itself is hard news.  It's hard for anyone to get this news and all day, I have thought about this.  It has consumed me.

Last night, in the darkest hours before the sun came up, I looked up to Heaven and with a pleading kind of sorrow begged to know how I was going to manage this; how we were going to manage this? Without hesitation, Heaven answered back..

'You have been handling this.  For 25 years, you have been handling this and you will continue to handle this and I will continue to lead you along with the same Angels I have sent to protect her on this journey so far!'

I can not argue with that!  The only thing that has changed is now we know, what we haven't known...it has a name.

My heart is so full of unspoken sorrows, awe and redemption.  It isn't just about a name.  The mind is a powerful thing.  No matter how hard you try to keep a peace within the stirrings of holiness and answers and heavenly understanding, it runs amok.  It drags you into dark places you shouldn't be, without permission, without regard for the havoc it will leave behind.

I have journeyed through Shelbie's life today.  I have relived every single puzzling moment that has now fallen into this place that finally makes sense.  It's like looking at a macro picture of an everyday object yet seems like nothing familiar until you expand your view, pan out...and then you see the whole of it.  Ahhh...a recognition.  An Awe kind of moment..."So that's what that was!!"

Today, I was in those late night moments when she was just two weeks old and lifeless in her bassinet.  I heard my voice, screaming at her tiny, angel face to just come back.  Please come back to me!  I felt my throat burn and tears streamed down my face and it was a trauma just as fresh at was in the moment so long ago.

Today, I felt the compression of her ribs under my hands as she lay on a concrete floor in the basement of some house in the far off country, how my air filled her 2 year old lungs. How I cried between breaths.  How my head was dizzy.  How Spencer, who was stirring in my 36 week pregnant belly seemed to anxious to get out.

Today, I saw how the lights of the ambulance chased their way along the thin walls of our mobile home when she was four and how Spencer tried to catch them as they moved across the wall of the living room where his sister was unresponsive.

All day, memories that I have tried so hard to care for at a distance, came pouring out and it has been hard.

Today, I wanted to scream at all the people who have ever doubted me, accused me, could never understand how deeply sad this journey has made me.  Today, I remembered how the social worker wanted to put video tapes in my house because how could these children be so sick under my care.  Today, I remembered the dietician and her accusations that I didn't feed my children.  Today I remembered the friends who walked away because there was always someone sick.  Always something traumatic.  Today I remembered each and every person who said I needed to stop chasing problems.  Today, the hurtful words both spoken and unspoken from a myriad of people who said I was making this up, molehills into mountains... played like an unstoppable reel in my head.

Today, was redemption.  Today, there was beauty for ashes...oils of healing in the suffering. Today, all the persecution I have faced, the friends who left, the doctors, the social workers, the husband, the people who were suppose to care but could only criticize...Today, they didn't matter to me anymore though my heart aches for them all the same; but it still aches for me.

I guess the important thing I came up with today is that Shelbie is a work of God.  Evidence that we are here with a plan and a purpose and no creation or destruction of man will ever trump what God can do.

Today, I am reminded that God is a God of lasting miracles.  He has preserved and protected my daughter until science could catch up with us.

Today I am reminded that God has carried us so far, even on borrowed time, breaths from Heaven, angels round about.

Today I feel unworthy of His blessings.

Today will be counted as one of the holiest of holy moments I have felt.  Today, I am overwhelmed.

Today, I have lived and felt every word to this song by Hilary Weeks, He'll Carry You

He knows your heart
He knows your pain
He knows the strength it took just to simply breathe today
He sees the tears that you cry
He knows your soul is aching to know why
He hears your prayers each humble word
When you said you couldn't face another day he understood
He knows the path that you will find
Though you felt alone he's never left your side


Chorus:


He knew there'd be moments when no earthly words
Could take away your sorrow
And no human eyes could see what you're going through
When you've taken your last step and done all that you can do
He will lift your heavy load and carry you
He'll bring you peace and leave you hope
And in the darkest night he'll comfort you
Until you know the sun will rise and each new day
You will have the strength to live again


Chorus:


And when there are moments when no earthly words
can take away your sorrow
And no human eyes could see what you're going through
When you've taken your last step and done all that you can do
He will lift your heavy load and carry you
He hears you when you're crying in the night
He hears you when your soul longs to find
Till the morning will come
And the light of the dawn reassures


Chorus:


That in the moments when no earthly words
can take away your sorrow
And no human eyes could see what you're going through
When you've taken your last step and done all that you can do
He will lift your heavy load and carry you

Today, I lived and felt every word of this song that I love so much! 


I am grateful for a Father in Heaven who has stayed close today. There has been no human to see what I have seen today, to have walked where I have walked or to know what I have gone through and am going through.  There are no earthly words to take away my sorrows and that is okay.

Remember, this place was circled on a map long ago.  The Beloved has knelt here waiting for us to arrive and arrive we have.  I think we will sit here for a moment and rest.


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