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.

Wednesday, August 30, 2017

When fear wants to take over

Excerpts from my journal this past month:

August 8, 2017

There is much fear and anxiety flooding my emotions. It's been years and years and years since I've felt so attacked by fear and anxiety. Years since I've needed medication to calm my anxious spirit. Mind-encompassing, breath-stealing, cold sweat, heart pounding anxiety. I feel so weak and unable to handle this so I began writing in my journal, positive truths that remind me that the power is not in me but in my Creator.   The words of this song fill my mind:

My life is in your hands,
Oh, Lord I want it to be there
My hopes, my dreams and all my plans
I trust entirely to your care

My life is in your hands
What  better place for it to be
The one who sees beyond today
Must know whats best for you & me.
(credit Chuck Giard)


August 9, 2017

I had to take a xanax to sleep last night, but I woke this morning with these words ringing my head:

God is too wise to mistaken
God is too good to be unkind
So when you don't understand
When you don't see His plan
When you can't trace His hand
Trust His heart.
(credit Babbie Mason)

August 12, 2017

Overwhelmed with so many anxious thoughts, trying to breathe deep and not let fear reign.  Another song came to mind:

The steadfast love of the Lord never ceases
His mercies never come to an end
They are new every morning
New every morning
Great is Thy faithfulness O Lord
Great is Thy faithfulness.

August 14, 2017

As it sinks in that this really, truly does look like cancer, the fear gnaws at my mind.

It's my children that bring me to tears:
Will my children believe God is good when I tell them I have cancer?
Will they run to a heavenly Father when they've already lost a biological mother?
How much fear will envelope their already fragile, traumatized hearts?
How can I be strong for them when I feel so weak?

God, be real to them.
Love them.
Surround them.

A New Path



This summer finds me floating through a new door. Not one of my choosing, but one that opened and pulls me through.

Grab a cup of coffee and I’ll fill you in:

It all started with a phone call in July when I heard the words, “it’s just a routine procedure, but your mammogram showed some areas of concern and we’d like to take another set of views, it's probably nothing”.

So July 17th,  once again, I subjected my ta-ta’s to being placed in a vice, twisted and squeezed until I could barely breathe, when the girl so sweetly says “take a deep breath and don’t move”.   Umm, sure, did you notice you’re smashing my ta-ta’s in a press...where exactly did you think I was going? Then I get to breathe for 30 seconds while they turn the machine to find a new, unbelievably awkward position in which to flatten me. Again.

But it’s really the “wait here while we have a doctor read these” comment that sends the warning bells blaring in my head and causes my stomach to drop.  The pathologist returns and informs me that it would be beneficial to have a streotactic biopsy, soon.  (Okay, she said much more than that but my mind was a bit blurred.)

In the meantime, I met with an Orthopedic Doctor because I have a partial thickness tear of my rotator cuff.  Three days after the steroid shot and percutaneous needle treatment has taken effect on my left side, allowing me to increase my range of motion, I head back to the radiologist office on August 4th, for my right ta-ta to once again be the star attraction.

Let’s just say that this is not a procedure you want to have. Maybe it was just my lucky Friday, but the doctor was nice enough to apologize for the twisting, vice gripping, and steam rolling that was apparently necessary to insert needles into my right ta-ta... and reward me a generous $5 Starbucks gift card.

Three days later, the pathologist said I need to see a breast surgeon, and she referred me to a specialist....who had an opening Sept 18th.

I thought, well, that must mean it’s not too big of a deal if they are fine with me waiting another month.  However, my doctor called the next day, using the “C” word for the first time and said she wanted me to go see someone immediately and not wait until September.  And just like that, on August 10th, I found myself sitting in a waiting room with my husband.  

Now two days may not seem long, but for me it was 48 hours of unknown anxiety and nerves, because life with Boy Wonder doesn’t stop. Ever. He keeps going & going & going. Xanax was my lifeline to keep calm in front of my boys and help me sleep at night. One shouldn't just drop the “C” word to a patient and have them wait 48 hours.


Part 2

We meet this doctor (who was not the one we wanted) who had an available schedule. He went over everything. Yet what I remember most was having a panic attack - - in a doctors office - - a full blown panic attack and overwhelming feeling like I couldn’t breathe. After 15 minutes of talking to us about A-typical cells and invasive ductal carcinoma and lumpectomies and mastectomies and genetic testing and radiation treatments and the need to reduce stress in my life...he paused to ask if we had any questions? 
Ummm. Blank stare. 
Momentary silence.
Yeah, probably a million of them, but I have no idea where to begin because this isn’t really happening to me, is it?

At this moment, I was so thankful for my handsome Prince being by my side, looking a bit dazed like me, but asking rational, calm questions.  I left feeling overwhelmed, scared, and uncomfortable with this doctor.  We got to the parking lot and I let the dam of emotions burst to my man with a cry of “how do I do this and handle Boy Wonder?”.

That afternoon I asked a few amazing women to pray that we would get in to see the other doctor for a second opinion.  I found myself needing to take a Xanax every 8 hours. My stomach was so upset and anxious, I could hardly eat.

Part 3

Monday, August 14th, Dr. H’s office called to say they have an opening on the 16th. This was the first stone of remembrance I began to build on.

Dr. H took over 2 hours to go over everything with us using graphs and handouts and printed materials. He explained every detail and the ‘what if’s’, paused for us to comment, then patiently explained more. We walked out of his office knowing he was a definite God-send to us, and we were in good hands. He set up an MRI early the very next morning.

August 17th I walk into radiology, where the receptionist and I are now on a first name basis, having had a mammogram, a shoulder x-ray, a shoulder MRI, a second mammogram, a sterotatic biopsy and now a breast MRI.  My ta-tas and I rejoiced that this procedure simply involved lying on a table, taking a Xanax, and being slid into a noisy, claustrophobic tomb. No poking, prodding or vice grips were present.

I left the MRI, and headed for genetic testing to see if I carry the BRCA 1 or 2 gene.

That evening the amazing Dr. H called me before leaving on vacation to tell me the MRI found a tumor all the other tests had missed.   Another stone of remembrance is placed. The fingerprints of God are showing up on this journey.

Part 4

August 24th I open this door with deep breathes, with clouded eyes and silent prayers.




This passageway leads me to Dr. O, my oncology radiologist, who I come to view as one amazing doctor.  Compassionate, concise, thorough and funny. They are calling it Stage 2A breast cancer.  I place another stone of remembrance, and praise God for his guidance in all this.

These are days of testing and waiting.
Waiting in itself has become a test.
There will be more to share on this journey as I watch the stones of remembrance grow, as I learn how I am ever going to handle this while living with Boy Wonders unique needs, and how God will make Himself real to us.

I am on the other side of the door. Walk with me.

Wednesday, December 7, 2016

What if December Looked Different This Year?



This Christmas our family is learning to give, and, well, I’m a bit embarrassed to confess,  it's not as easy as I thought it would be. I’m a little more OCD than I'd like to admit, I’m a bit more impatience than I thought I was, and I actually like all my worldly American comforts.

You see, this Christmas, my husband and I decided we are not giving each other gifts, and our kids are each getting 1 gift and 1 adventure date coupon. Instead, we are opening our home to a teenager who is an Eastern European orphan, “N” (her name and location are being withheld for privacy & safety reasons).  We are partnering with Project 143 to give orphans hope.

In the past we've gone to other parts of the world, this time we are bringing the world to us.  We've come to recognize even though our hearts stir us to go into all the world and share the good news of Jesus, our family dynamic is such that we just can't. We already have a child who has a disability requiring adult supervision at all times. Taking him into places with unfamiliar smells, where he is on sensory overload, and can't find a quiet room full of Legos, is too much for him (and me!).

Here’s the thing: my excited, motherly heart tells me to splurge on N this Christmas. I want there to be stacks of presents for her under the tree; I want to take N on a shopping spree at Nordstrom; I want to give her a Pottery Barn bedroom; I want to have a day away at Spa W being pampered from head to toe; I want her to spend a day wandering Powell's Books and buying everything that takes her fancy; I want her to go to school to have friends; I want to teach her to ski, to bike, to ride a horse, and I want her to put her toes in the ocean.

Then I stop myself and remember…all she really needs for Christmas is a family.

What she really needs is hugs every morning, prayers every night, grace throughout the day, boundaries and unconditional love. To know she is loved, and she is accepted. To know the Messiah came 2016 years ago and she can receive the free gift of salvation through Jesus Christ who loves her.  So we are going to do our best to meet those needs from Dec 20th to Jan 15th, and plant seeds of hope we know will continue throughout her life.

This song by Matthew West truly expresses what we hope to do this year: Give This Christmas Away.