Sunday, September 10, 2017

Even If...

As I process having cancer and the gamut of emotions I've experienced in the last month, it's made me even more aware of how Boy Wonder processes life.

Cancer is a scary word. It makes one stop and reflect on the brevity of life: every breath is a gift, every moment a memory. There is much hope in a good doctor, in medical technologies, in advanced medication. My doctor is confident that within 6 months to a year, my life will return to normal.

Not so for Boy Wonder.
FASD is permanent.
There is no good doctor. There is no medical technology to assist him. There is no advanced medication to heal him. FASD is life long.  FASD is his normal. 

FASD is an invisible disability. Invisible to the world... but not to him. Not to us. We clearly see his struggles every day. Every single day of his life he wakes up to face so many hurdles, including proprioceptive dysfunction and tactile dysfunction.

Every day his senses are assaulted by aromas of the cafeteria colliding with the smells of lotions & bodies in the hallways; his ears ring with the vibrations of pencils scratching on paper and the cacophony of voices blending with the slamming of lockers; his skin receptors yearn to feel the pressure of a friendly hug or high five, yet he's prohibited from touching other students lest he trigger a harassment charge from a politically correct public school system.  It takes him minutes and hours to process questions and expectations, but in a world that runs on instant gratification it is impossible for him to keep up. 

He lives for days at the ocean where the salty air calms his mind and his constant whistling bothers no one as its carried away on the ocean winds. He longs to be buried in a cocoon of sand, slathered from head to toe, every inch of his skin blissfully covered with the tiny granuals of warm sand.  At home, his fight or flight reflexes never rest; he is always on edge, jumpy and easily frightened. On the sprawling expanse of the coastline there are wide open spaces to run and roll, to squeal and whistle, to let his fear and anxiety roll out with the tide.

So as I prepare for surgery to take me on a journey of healing, my heart goes out to this amazing kid of mine who will most likely never find complete healing in this life. He is the true warrior. I am learning from him.

Even If (by Mercy Me)

They say it only takes a little faith
To move a mountain
Good thing
A little faith is all I have right now
But God, when You choose
To leave mountains unmovable
Give me the strength to be able to sing
It is well with my soul

I know You're able and I know You can
Save through the fire with Your mighty hand
But even if You don't
My hope is You alone
I know the sorrow, and I know the hurt
Would all go away if You'd just say the word
But even if You don't
My hope is You alone

You've been faithful, You've been good
All of my days
Jesus, I will cling to You
Come what may
‘Cause I know You're able
I know You can


  1. When I had brain surgery for my non-cancerous tumor, I kept remembering the sermon I heard the Sunday before. It's main point being, God is always with you. He is in the waiting room. He is in the surgical area, he is in the ICU. He is in the IV dripping into your veins.

    Ask them to turn the tv on to the instrumental channel with photos. It helped me focus more on God. He will be sitting with you, hold you near.

    And, with that pesky FASD, well, yeah, fight/flight just doesn't stop, does it? Except for those few hours in a happy place. Keep praying for more happy place times & areas.

    You will be in my prayers. You HAVE been in them. Your family is in them. (((Hugs))) like back in NC! 😊 Someday again, out in Bend. Love you, Laurie!

  2. So beautifully expressed. Praying for you and your family ... help, hope, healing!!

  3. Thoughts and prayers with your doctor's, for a speedy recovery and complete remission of cancer. Prayers also for Boy Wonder, as I can fully empathize with his plight and yours. My son has ADHD, my daughter high functioning ASD, and life is very difficult for them both in the public school system. I understand struggles with personal space, when love and acceptance is all he wants to feel. I love that you blog, and find inspiration her. Thank you!