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

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.

So near to God

This is a first for me: I'm not prepping dinner. I'm writing this as my boys help my husband grill a special meal for me in honor of Mothers Day. I've turned up Spotify and am tuning out the minor bickering and choosing to be grateful for the messy-kitchen-spills, a result of their gracious attempts at a fancy meal prepared with love. My children are far from perfect - - which is fine, because so am I!  Yet, I take time today to be thankful for each of their precious lives. Both children born in my prayers and heart long before they entered my life. Both children held so near to God before they were held in my arms.

I'm thankful for each of their unique personalities, about as polar opposite as two brothers could be. I'm thankful for their silliness and laughter and constant chatter. I'm learning to be thankful for burps and body noises because it means they are healthy enough to be rambunctious. I'm thankful for stinky, sweaty socks because it means they played hard and exercised their bodies. I'm thankful for dirty dishes piled up in the sink because it means our bellies are full and content with plenty.

I'm learning to be thankful for disability because it has taught me that I can do nothing on my own, but all things through Christ. I'm thankful for disability because it opened up a new world of friendship with some spectacularly awesome families I would otherwise not have taken interest in. (Shame on me!)

I'm thankful for the wisdom and truth that God gives me on this journey. I'm thankful that every human being - - from the developing babe in the womb with Trisomy 18;  the non-verbal one with autism longing to express themselves; the orphan in Nepal who is frightened;  the beggar under the Portland bridge seeking hope; the one who is wheelchair bound craving legs to run; whether their skin be red, brown, yellow, black or white- - every person created has value in the eyes of God!

Here's a wonderful quote to remind us to dwell on the beauty of that truth:

“If man really is fashioned, more than anything else, in the image of God, then clearly it follows that there is nothing on earth so near to God as a human being. The conclusion is inescapable, that to be in the presence of even the meanest, lowest, most repulsive specimen of humanity of the world is still to be closer to God than when looking up into a starry sky or at a beautiful sunset. Certainly that is why there is nothing in the new testament about beautiful sunsets.- Mike Mason -Author of "The Mystery of Marriage”

Nourish

Welcome to a new week! I don't know about you, but my soul was wonderfully refreshed yesterday as I spent time with God and took a day of rest with my family.  I have no doubt that God had our spiritual, emotional and physical bodies in mind when He incorporated a "Sabbath" rest for us.

It's Monday: back to school, groceries, laundry and helping people achieve personal goals in their lives. We're also under a thunderstorm and flash flood watch, so I've got a double batch of muffins in the oven right now, waiting to be eaten during that afternoon crazy hour when our bodies need refueling & rehydration. Now that I've nourished my soul, here's a fantastic way to nourish the body. 

Gluten Free, Dairy Free, Refined Sugar Free Banana Muffins in minutes.

You'll want to make these right now.  Best news: they are healthy and they are quick! 30 minutes and you'll have them prepped, baked and cleaned up. No kidding.  I think I based my recipe on this one I found on Pinterest. but I've been making them for so many years, I'm not sure. Enjoy it nonetheless!

Banana Muffins:

• 1 medium/large ripe banana, peeled   (FYI, ripe bananas are soft and brown & very high glycemic. Green bananas are lower in sugar, but don't give the liquid to the recipe)

• 1 large egg
• 1/2 cup creamy GF peanut butter or sunbutter (DO NOT use almond butter!)
• 3 Tbls agave 
• 1/2 to 1 tablespoon vanilla extract
• 1/4 teaspoon baking soda
• 1/4 teaspoon cinnamon
• 1/8 teaspoon salt
• 1/2 cup mini Enjoy Life chocolate chips (gf, df, nut free)

DIRECTIONS:

Preheat oven to 375 standard or 350 convection

Grab your Demarle silicone mini muffin pans.  Or, prepare mini muffin pans by spraying very, very well with cooking spray; set aside.

Grab a blender: Vitamin, Blendtec, Magic Bullet...whatever spins your world.

Add to blender in this order:  agave, egg, vanilla, banana, peanut/sun butter, cinnamon & baking soda, then blend on high speed until smooth and creamy, NO MORE than 1 minute. Seriously. You'll heat up the butter and your chips will melt into a gooey mess. Just sayin.

Add heaping 1/2 cup Enjoy Life chips and stir in by hand; don't use the blender because it will pulverize or melt them.

Using a small Pampered Chef scoop, drop 2 scoops into mini muffin pans. Each muffin should be filled to no more than 3/4 full (any fuller & the muffins will not rise properly).

 

Sprinkle each muffin with a generous pinch of chocolate chips. Just because I love chocolate.

For best results, bake at 350 convection for 9 minutes
Or, bake at 375 for 10-12 minutes

Do not over bake. Muffins will rise greatly in oven & fall as they cool on counter. Do not panic. They will taste fantastic!!!

Allow muffins to cool in pans for about 10 to 15 minutes.

Makes 12-14 mini-muffins. They will be eaten before you can pack them away.

I make these ALL THE TIME. I always double the recipe because these muffins freeze fantastically and hold up perfect in school lunches.  Here's a few more options I've tried during the zillion times I've baked them...

Variations:
Add 1/3 cup unsweetened natural cocoa powder and 1 Tbls more of agave
Add mint chips instead of chocolate chips.
Add 1/2 tsp of bakers coffee spice blend

To make them sugar free completely:
These are good, but aren't as fabulous as the above recipe.

• 1 cup + 1 Tbsp almond butter
• 1 egg
• 1 banana
• 3 tbsp coconut milk
• 3 Tbsp stevia powder
• 3 Tbsp cocoa powder
• 2 Tbsp cocoa nibs
• 3/4 tsp baking powder