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

Friday, September 8, 2017

Unshaken Hope

Continuing to share some excerpts from my journals over the past few weeks. Learning to look for more stones of remembrance along the way.

August 28th

The God of all comfort is who I cling to in these moments.  He is the only hope for those living with disabilities. He will see me through this temporary disability just as he continues to do for my child's permanent disability.

August 30th

Today was filled with much doubt and nagging fear, thoughts such as this cannot be happening and how am I supposed to handle this. Maybe it's all the hormones, maybe its the boys being cooped up inside and unable to breathe because of smoke filled skies, maybe it's the days of waiting for what is unknown. Today was just all around depressing.

Tonight I read Psalm 43:5 "Why are you cast down, O my soul, and why are you in turmoil within me? Hope in God; for I shall again praise him, my salvation and my God"

I will not allow this cancer to cast me down and bring so much turmoil into my life that I miss moments with my family. Hope, not worry. Live in the gratitude of the moment, because the next moment is not guaranteed.

September 1, 2017

This morning we met with Dr. H for my pre-op appointment. He did an ultra-sound to show us where the cancer is appearing. It looks hopeful that it is not spreading.  Now the countdown to September 12 begins.

In the afternoon we escaped town to head to the coast for fresh air. I need ocean therapy. And Boy Wonder absolutely thrives in the sand and salt water, where every sensory craving he has is blissfully and continually met.

Wednesday, September 6, 2017

Oh! Those emotions.

I'm continuing to lay stones of remembrance each step of this new journey.  I want wildflowers to grow in unexpected places. I want to learn to praise him when dark trials come and fill my heart with fear.

Excerpts from my journals this past week:

August 21, 2017

Starting a new week with a new song in my heart:

When the morning falls on the farthest hill
I will sing His name, I will praise Him, still
When dark trials come and my heart is filled
With the weight of doubt, I will praise Him, still

For the Lord, our God, He is strong to save
From the arms of death, from the deepest grave,
And He gave us life in His perfect will,
And by His good grace, i will praise Him still.
(credit Fernando Ortega)

August 22, 2017

Today was really exhausting. I'm just being honest, stopping my Bio-HRT is making this journey so hard. While Rock Star is mostly stepping up and helping out, Boy Wonder is falling apart. Each is coping in his own way right now. And I get it. It's not easy to grasp. And my emotions are taking a dive. You DO NOT want to be in our house right now.

Menopausal mom with Rock Star and Boy Wonder both hitting those teen hormones.  Today, I feel more like throwing a stone of remembrance, not laying one down.

August 27, 2017

At church this morning Ben Fleming talked about "Doxology" in the Psalms.  I'm paraphrasing what he said but it comes down to this:
"Doxology isn't based on my life circumstance or situation, but on God and who He always is."

Stop for a moment and let that sink in.

Tuesday, September 5, 2017

Desperation can cause you to Sing

Many years ago I read a book by Chuck Swindoll entitled "Stones of Remembrance", which discusses and meditates on the significance of building "stones of remembrance" to recall what God has done in our lives.  On this new journey, I began journaling so I could see and remember what God is doing.

Excerpts from my journal this month:

August 15, 2017

I've been reading a book entitled "The 23rd Psalm for the 21st Century, a Jewish shepherds story" by Lon Solomon.  I love so much about this book!  God is reminding me that this is just another valley.
"God has seen every crisis and is aware of every need we will ever have - and he has already been through the mesas of our life making provision for them all."

And it reminds me of a Steve Green song:

Hidden valleys produce a life song
Hidden valleys will make a heart strong
Desperation can cause you to sing
Hidden valleys turn shepherds to kings.

August 17, 2017

Psalm 23:5  "You prepare a table before me in the presence of my enemies."

Cried and cried but seeing the fingerprints of God again.    Today, God, as my shepherd went before me and prepared an open appointment at 8 am this morning. God prepared a table for me in the tunnel of an MRI. He quieted my should with calm and truth (and a xanax). 

August 19, 2017

Continuing to lay stones of remembrance as I marvel that God goes before me as my shepherd. 
Holding my child in my arms as he cries uncontrollably over the unknown things in his mamas diagnosis.  God is their shepherd too.   I need to trust that God also has my boys in his care. That his plan and purposes were established before they were mine and will remain long after I am gone.