Winning The Heart of Your Child

This blog has been silent for over a year. Sometimes writing helps process life. Sometimes life can't be processed in words. I do know that cancer changed the trajectory of my life forever. Just as disability did before cancer. Just as adoption did before disability.  Just as infertility did before adoption. Life happens in the blink of an eye.

In the blink of an eye, Boy Wonder entered high school and Rockstar Kid became a teen.  At 5, I was their world. They wouldn't dream of heading into school at morning drop off without a hug, a kiss, a verbal "I love you mom".  Now as teens, they barely acknowledge I'm in the car. And it would be their worst nightmare if drop off included a hug or a kiss on the cheek.

What happened to my little boys? I blinked and they are tweens, growing into teens, heading for manhood. Hormones have taken over their bodies...I often wonder, do I still have their hearts?

Over the years, I've read so many parenting books: books on discipline, books on scheduling, books on emotions, books for neuro-typical kids, books for children with trauma, books for a child on the spectrum, books for strong-willed boys. Every book had its niche, and I could glean one or two things from each book, but needed to toss the rest of the chapters because it didn't fit my child.  Then puberty hit and, wow!, did I feel hopeless and confused with parenting.  What do I read for the strong-willed, hyperactive, hormone-engulfed, I-love-you-just-kidding-I-hate-you-emotionally-charged, adventurous, I-want-independence, I-need-you, phase of my boys life?

Big sigh.  Lots of prayers. Lots of do-overs. Enter Mike & Kristen Berry. Cue the music. Carve out a moment of your day because Winning The Heart of Your Child is going to be released February 5, 2019, and I was given a pre-release copy to read and review.

Pour yourself a drink, find a quiet spot, and dig into this book.
Whatever season of life you are in...childhood, tween, teen...this book is one you'll turn to over and over. It's practical. It's straightforward. It's honest.

Whether your child is typical or on the spectrum, biological or adopted, boy or girl, you will find encouragement and wisdom from an author who's been there/done that. This is practical, smart parenting.

The first portion of the book is about The Great Misunderstanding in parenting.  For me, this provided real insight into why my reactions and my approaches haven't worked. And boy did it hit home!

The second portion of the book is Parenting for the Win, with 9 keys to building a lifelong relationship with my kids. Nine ways you can begin or continue to connect with your kids or teens.  Let's just say that I underlined so many points in these chapters, you're going to want to get the book!

The final portion of the book is Moving Forward. It's where you get practical and daily. It's the part I'll need to write about later, because, honestly, I'm still moving forward. My little boys are growing young men. They don't need me, but they desperately need me. They don't want to talk, but they want me to listen. They don't want me involved, but they want to know I care.

My biggest critique of the book....Key 5: stay involved with your child..." be ready to set aside what you are doing when your children want to talk".  Whaaaa! but I just want to keep reading this chapter of this book.  I'm supposed to put what I read into action, so I take a deep breath and close the book and make eye contact and I listen.

Now it's your turn.
Go to this website to grab your own copy of the book:  http://www.winningtheheartbook.com/
If you pre-order from the website before Feb 5 you will receive :
    Access to Exclusive Winning The Heart Book VIP Facebook Group
    A Special 3-Part Video Series on Understanding Your Influence
    A Downloadable PDF Library Of Extra Content
    An Entire Library Of Colorful Images for Your Phone, Tablet, or Computer
    A Special 3-Part Audio Series on Parenting On Purpose
    A 16-Week Facebook Video Study Series


(*Here's where I need to disclose that I did receive a complimentary copy of this book, in exchange for writing a review. The opinions about the book are 100% my own. I also do NOT receive any compensation when you click on the links and/or purchase a book. I'm recommending it because I actually really like the book.)

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

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.

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.

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.

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.

Hope that does not Disappoint

Often, living life in a home where there is a child with “high needs” can be exhausting.  It can easily be discouraging when we see our children failing to meet the milestones that typical children are soon passing.  If I'm not careful, that discouragement so quickly crawls into the crevices of my mind and I must remember that I am learning to live a different dream for my child.  

 
There is sometimes a grey cloud cover on this journey, hovering ominously on the horizon, as if Eyeore has taken up residence in my home. And I don’t want him here, gloomy and mopey, always certain that the next step on the journey will bring disaster and more disappointment.  I want my home to be one where Christopher Robin would love to live: full of anticipation, adventure, laughter, and hope.

Hope, in my mind, is a key word for parents, for caretakers and for children living with developmental delays. Actually, especially for children with special needs. 

Hope. Not as in I want something to happen or be the case,  not referring to the lucky feeling when we hope to win the lottery, nor focused on the wanting when we hope to get a bike for Christmas.

I’m referring to lasting hope.  
Hope that does not disappoint. 
Hope that is bigger and deeper and surer than any diagnosis. 
Hope that looks beyond the possibilities of cures and medications.  
Hope, the desire of some good with the expectation of obtaining it. 
This is my hope that does not disappoint: Christ my Savior, with the promise of heaven to come.

Hope which reminds me even though we had major behavioral set-backs today, I know that tomorrow is a new day filled with grace. Hope that reassures me in-spite of my shortcomings as a parent, my child can set his sights on One who is greater than me. It is the object of my hope: the sure and steady anchor in the storms of disability, Christ alone.

And in light of that hope, on hard days, I can choose to take a deep breath, to offer an embracing hug and kneel in quiet prayer and say the words “I love you, I forgive you”.  It is because of a future hope, secure and true, that I know that I know, that my child has a purpose and plan in life. It is this hope that gives me confidence that even when I fail and we have to try again tomorrow, one day there will be no failures, there will be no more disability.  And I exalt in the hope of that glory! For THAT hope, that anchor for my soul, does not disappoint.

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

Fitness Bands

At Christmas my wonderful husband gifted me with a Garmin fitness band. It's a handy little gadget for tracking daily steps, whether on walks with kids and dog or running household executive duties (indoor cardio, aka, hauling laundry up & down stairs, unloading groceries).  It's also connected me with others so I can be challenged to keep up my efforts and raise my goals.  How did I ever live without it???

This past month I've noticed how incredibly useful and motivating my fitness band has been in keeping me on track with my steps each day. Those annoying inspiring red dots flashing, reminding me I haven't moved enough in the past hour.

As parents caring for loved ones with disabilities, we are constantly on the go: kids that live on minuscule hours of sleep, therapist appointments, allergy appointments, healthy meals to cook, houses to clean, more therapy visits, juggling calendars for the rest of the family.  Whew! Some days we can rack up steps without too much effort.

Have you noticed, as caretakers, we too often place our needs at the bottom of the list? Sometimes, intentionally, as a servant; sometimes, with a tired, woe-is-me if-only-you-knew attitude.  Which ever the reason may be, we need to stop. We need to take a deep breath and just breathe. 

Try it right now. 

Oh, you thought I was just writing, not speaking to you...  At your desk, on your smart phone, wherever you are reading this: inhale slowly through your nostrils, 1-2-3-4-5; exhale, gently push air out of your mouth, 1-2-3-4-5.  BREATHE.  This time (if you're not on an airplane) stand up and raise your arms above your head as you slowly inhale, filling an imaginary balloon in your stomach.  Now push the air out as your arms fall to your side, releasing the tension.  When is the last time you did this?  Really?!? That long ago!

I came to the realization that I needed a spiritual "fitness band" on my wrist too: something that will remind me while my life is constantly on the move physically, I need to "slow down" spiritually; telling me that I needed to stop and pray, or sit and be quiet with Gods Word.

It is imperative as a caretaker that our tanks be refueled on a daily basis.  Our feet should never hit the floor in the morning without recharging our emotional and spiritual tank for the day.  Place a Bible next to your bedside stand so you see it first thing in the morning. Make a good choice with that smart device you own and download a free app such as the YouVersion Bible or Truth For Life devotional.  She Reads Truth is one of my favorite free apps!

Here's sage advice from Joel Belz of World Magazine: "The “mind of Christ” doesn’t get formed in an instant. It comes through lifelong disciplines. That’s why all of us need to be infused frequently—maybe even constantly—with the life-giving discernment of God’s special revelation in the Bible. Better to try to keep up your physical well-being without eating every day than to keep up your powers of godly discernment without daily recourse to God’s very words and instruction for His children. "

I challenge you to get your spiritual fitness band activated with me each morning. I'd love to hear how you are staying activated spiritually.

A Season of Hope

I’ve had a favorite Christmas ornament for 13 years. This intricately hand painted scene of Salzburg, Austria on fragile blown glass has traveled the hills of Austria, into Germany, across oceans, through TSA gestapo and the rough hands of movers tossing boxes across 3,000 miles of America. It’s hung gracefully on my tree for 13 years in 5 different houses. Each Christmas as I’ve unpacked and repacked it with care, I’ve told my children the adventure and joy it signifies, a reminder of a beautiful trip with my husband exploring the grandeur of a land dear to us. I’ve told them of the market stalls and grand cathedrals, of the castles and music, of the people and friends that are etched in my memory.

This year I kneel on the floor, my hands shaking, my eyes so blurred I can scarcely see the shattered pieces of tiny glass. While tears stream down my face, Boy Wonder sits in the other room sobbing, knowing that this time he went much too far. It is by no means the first lovely sentimental item he has destroyed. Yet this time, I am so filled with sadness and regret I cannot go near him. My frustration of all he has done this week, culminated in anger at the sight of glass scattered under the tree, the result of direct disobedience and impulsiveness on his part. He squeezed the glass until it shattered... compressing my patience right along with the glass.

My emotions too raw, I order him out of the room. I am repulsed by the sight of him: of his increasingly selfish behavior the past months, of his greediness, of his unending want, of his constant focus on himself, of his meltdowns when he doesn’t get his own way. 

He cries now only because he fears a consequence, not out of sorrow for hurting another. As with most people affected by FASD... he just doesn’t get it. He has no comprehension this ornament is irreplaceable. He doesn’t appreciate the value. He doesn’t have compassion for others. Still my hurt, my anger rages deep inside me and overflows from my wicked tongue to pierce him with my words.

As I sit with tears streaming, softly mixing with remnants of glass in my broken pile, waiting to be cast forever into the rubbish heap, the irony of the beautiful tree and the bright crimson embroidered “Peace on Earth” tree skirt suddenly flood my soul.  Sobs rack my body as I see the brokenness it all portrays.

Such is life with disability: the perfect ornament we want the world to see, a shattered family painted inside, a fragile child hanging in the balance. I reach up to gently unhook the rest of the glass still attached to the tree. I find another thin shard of painted glass resting in the evergreen bough. I am overcome with emotion.

Is this not the reason God sent the Messiah to us one Christmas season so long ago: to sweep up the pieces of His beautiful world that man has shattered. To heal wounded, fragile souls. We took His delicate, hand-painted world and slowly compressed the beauty of His creation with the sin in our hearts: our gluttony, our greed, our sexual preferences, our self-sufficiency, our idols. Until one day the glass could no longer withstand the pressure -- sin shattered our souls into hundreds of tiny pieces, the only hope of rescue being a Savior. And in the fulness of time: Jesus, the Messiah, the Son of God come to earth as a son of man.  He came in such a fragile form, creating the very womb that gave him life! It is too much for me to comprehend. This grace extended to me. This reconciliation of man to God via a crimson stained Savior.

I’m still shaken as the day passes. I am saddened by what cannot be replaced. More than grieving the temporary beauty of the ornament, I grieve the loss of the things Boy Wonder does not comprehend: of emotions and empathizes that are foreign to him. Yet the crimson words of "Peace on Earth" ring in my mind and I find solace in the eternal beauty of this season... knowing in the Messiah there is found everlasting hope for the parent, for the child, for the family exhausted by disability. I close my eyes at the end of a long day and rest in the promise of peace on this journey.

My heart kneels as I ask for more grace.

Immanuel has come: God with us.

Red Shoes Rock

There's a small movement occurring across the world right now.... and I’m not referring to the Ice Bucket Challenge.  This grass roots movement is called Red Shoes Rock. The idea is to wear red shoes from now until September 9th (Fetal Alcohol Spectrum Disorders Awareness Day) and every time someone comments on the red shoes, the wearer educates another person about FASD.  (As if I need another reason to buy me some new Red Shoes!)

Today my shoes took me to a place of grace, flowing with hope and source of peace.

God surely knows that on this FASD journey I need grace. Boy Wonder also requires grace on a daily basis. Living on the Spectrum can cause him to be THE. MOST. ANNOYING. CHILD. EVER!!  In our house we have run the gamut of annoying OCD habits.  Lest you think I exaggerate, here are just a few:
Whistling that would put even the Seven Dwarfs to shame.
Humming incessantly as long as he’s awake.
Biting nails like they were his Last Supper.
Picking skin until it is scarred and bleeding (we should've bought Band-Aid stock!).
Sucking fingers as if they were slathered in sugar.
Right now however, its clapping. Non-stop clapping. Eating and clapping. Walking and clapping. Reading and clapping. Playing and clapping. Clapping. Clapping! CLAPPING!! So yes, in case you wonder, grace is needed in my home.

Here’s the catch: The more irritated I am at his annoying traits, the more grace he needs...yet the longer the annoying habits manifest themselves in my presence, the less likely I am to give the grace.

Still the real irony is found in the fact that the less I am to give him grace, the more likely I am to lie in bed at the end of the day and ask God to give me grace.

And once again, I find that my child with disabilities truly has the ability to teach me oh so many lessons which I need to learn. God has pointed out many of my short comings through his young atypical life.

So when Sunday morning rolls around and I slip beautiful Red Shoes on my feet, they are walking me into a place I need to be. My soul is parched and desiring Living Water. I need the sweet grace of the Holy Spirit to fill me with cool, refreshing water of life that I may overflow into my family.

Where will your Red Shoes take you?

I Slipped

It was one of those afternoons, Dear Hubby was out of town on business again, (which of course, involves dining & wining others a concept I’ve all but forgotten), as I’m at home learning how to eliminate 54 foods (favorite foods!) from Rock Star's diet. It was raining again still; PMS was on its way. Boy Wonder had completely smashed his glasses in anger at school just a couple hours prior; I had somehow managed to not blow my temper in the car when I saw what was left of his glasses and read the letter from the teacher describing what happened - especially since this was the second time in the past 10 days he’d broken them.

I had maintained my cool; I was inhaling deeply and exhaling a prayer. The ever fragile time-bomb, otherwise known to disability parents as the hours between 4 and 7 pm, slowly ticked away.  As I went to transfer the laundry from the washer to the dryer, I realized Boy Wonder had been suspiciously silent for the past 10 minutes, so I stepped out of the mud room to investigate, which made me remember I should pull some frozen meat out of the garage fridge for dinner tomorrow, but then, out of the corner of my eye, I saw the dog following me to the garage and realized it was time for him to go potty, just then I heard Boy Wonder yell for me from the back patio, so I spun around to head back up the mud room steps when it happened: I slipped.

And I went down in searing, instantaneous pain. It hurt. Everywhere: my shin, my knee, my hip, my elbow, my broken fingernail. How I managed to not leave a blue-streak longer than any Ralphies father had hanging over Lake Michigan, I will never know. It hurt that bad!

The noises continued whirling: the barking of the dog terrorizing the neighbors cat, Boy Wonder asking ‘where are you mom?’, Rock Star wanting homework assistance, my phone dinging, the dryer buzzing.  Still I sat on the floor in the mud room, allowing the tears to fall freely. I was in pain and I did not want to move.   I just wanted someone to come rescue me, someone to tell me to go lie down, someone to bandage me.

When it crosses my mind: “Isn’t this just like the journey of raising a child with disabilities?”

How often I slip as a parent!  I am not perfect and this road is full of twists and turns and slippery slopes. Over-exhaustion causes me to be short-tempered with my spouse. Frustration of always being needed causes me to speak in unnecessarily harsh tones to my children. The pressure of needing to maintain a clean diet depletes much of the joy of cooking. Endless therapy appointments prevent me from having “me” time. Unpredictable and unexpected illnesses cause me to break my rare social dates with friends. And once again, I feel myself tumble down.

Each slip, causes another bruise.
Each fall brings a bit sharper pain than the last slip.
It is often a solitary journey- this life with disability - to slip and find no one there to lend a hand.

Yet on the hard, cold cement floor of the mud-room, nursing my already-turning black & blue bruise, breathing in and out, I hear the gentle voice of God whisper to me through all the noise: “Encourage the exhausted and strengthen the feeble. Say to those with anxious hearts, ‘Take courage, fear not…your God will come’.”  Isaiah 35:3-4

It is in this unexpected slip I am reminded that I MUST schedule quiet time into my calendar. I MUST guard my alone-with-God-morning and treat it more precious than coffee time with a treasured girlfriend. I MUST pencil a technology-free block of time into the start of my week, without fail. I MUSt follow the example of my Jesus who often withdrew from the crowds and went away to pray. For when I neglect this sacred time…I slip.

Soothing words for my aching wound flow from the One who comes alongside me on this journey:

If the Lord had not been my help,
    my soul would soon have lived in the land of silence.When I thought, “My foot slips,”
    your steadfast love, O Lord, held me up.When the cares of my heart are many,
    your consolations cheer my soul.
Psalm 94:17-19 ESV

Joy Comes in the Morning

Deep breath in.  Please God give me wisdom.
Now exhale. Oh God, how do I reach him?
Again. Breathe in deeply, fully. I’m waiting God.
Slowly exhale.

This has been my mantra for the week. Breathe in. Pray. Release the air. Pray.
Each breath has been a cry of my heart to gain insight into my son. This complicated, fragile boy  placed in my care.

I pray, I ask: God, you did place him in my care.  So I assume you trust me. You believe that I can raise him. You believe that I have enough wisdom and love and grace and patience to be his mother.

This week has brought great doubt to every area of my life.

This month has seen grief wash over me like the ocean waves rolling in with the evening tide. Oh the pieces of my heart that have been pulled under with each surge of anger that washes over this Boy Wonder.  I’ve lost count of the times he has yelled in anger “I hate you!”.  The wave that knocked me off my rock was to hear him scream “I hope you burn in hell and I live in heaven and I never see you again!”.  I stopped in speechlessness and physically took a step back.

There has been a storm front looming over the horizon each day the past few weeks. Short bursts of anger. Name calling. Disrespectful comments.

Little by little gathering momentum, until unleashing in full fury upon our household in one fell swoop. Red faced. Sobbing. Hysterical high pitched screams. Ear piercing screams. Screams that cause the puppy and little brother to cower in the corner. Anger, frustration, terror.

I am emotionally exhausted. I am physically tired. I am spiritually drained. I go to my room and kneel to pray. I cry out in my mind, for I know that the sound of my voice could not be heard over the deafening screams coming from down the hall.

I cry in fear. I cry in desperation. I cry because it is all I know to do.

I am fairly certain there is an unseen battle taking place in my home: Satan is waging war for the soul of my son. An all out forces of evil attacking his young spirit, causing him to say irrational things.  Things in my heart of hearts, I know he doesn’t mean. Things I know he will regret by nightfall. But words that pierce, words that hold consequence.

Thus, the battle wages down the hall in an adjacent bedroom….and in my mind as well.

How can God create this precious young boy with the incapability of understanding consequences…and expect us to raise him in a society that expects consequences?

I am not at peace.

My faith is being shaken, yet I am determined to search Scripture, to wrestle with God until I resolve this.

Two hours later, an exhausted, blotchy faced boy with swollen red eyes, lies listless in his bed, looking defeatedly into my eyes. With tears he whispered, “its’ not fair…Jesus lives in brothers heart but he won’t live in mine. I can’t hear his voice like you do.”

Oh God! He is listening to the theology we teach him. In his own way, he is not turning a deaf ear.

I held his trembling hand in mine and gently told him, “Oh sweetie, Jesus will live in your heart any time you want him to. But you have to ask him. You must be the one to tell him you are truly sorry for your sin. You must be the one to confess your sin, to tell God that you believe that He sent His only Son Jesus to die on the cross for you. I cannot ask for you.  And I promise, when you do ask, God promises that He will never ever leave you. You will hear his voice. You will not always do good, but you will be able to try.”

This is not the first time we’ve had similar conversations. Boy Wonder has always said he doesn’t want to talk to Jesus. He doesn’t want to pray. He doesn’t want to confess his sin.  So I’ve never pressed the matter.  I have no doubt in my mind that I could have easily convinced him to say a prayer and be “saved” many years ago.  But I’ve waited, wanting for it to truly come from his heart and not from copying me or brother.

Tonight, he did. Simple, mumbling & muttering, humbly he said “Jesus I am sorry. Please live in me.”

Salvation.

Oh God, let it be so! Let tonight be the beginning of a new path for this boy.

Will his FASD, his ADHD, his ASD be cured in the morning? No. In my wildest dreams I could only dare to hope for such a miracle.

What I do long for…what I hope and pray is that from this moment on the Holy Spirit will have the upper hand and will guide my boy. That the power of the Holy Spirit will be so great that Satan will now flee. That the demons that have plagued my son will be gone.

Weeping may endure for the night, but joy comes in the morning.

Facing Our Fears

I am a good mother. I know I am. I may not be perfect, but I am a lioness where my cubs are concerned.

I can control what food goes into my shopping cart and therefore, what food goes into my childs body.

I can decide to which friends house I allow them go for play-dates, thus controlling what they are exposed to.

I choose whether or not to wake them early on a Sunday morning for church, thus I control whether or not they are influenced for good or evil.

I can choose whether to turn on or off the tv, the Wii and the iPod: thereby I control what type of media influences they are bombarded with.

I can choose whether or not to spend money at the movie theatre, so I control what their minds are exposed to at any given age.

I can choose to allow them to sleep in or to wake them a few minutes earlier to give us time to open Gods word at breakfast and learn without hurry together.

I choose school options of public, private or homeschool, and I can control what kind of education my children are given.

What I can’t control is their future.  

As a parent of a child with disabilities… that can be a very frightening thought.

After all, I am his advocate, his lifeline, the one who “gets him” without him having to explain, the one who is often able to predict how he is going to act/behave in a situation.

Which only leads to another terrifying thought:  What will happen to him if something happens to me?

Although I have walked in a relationship with Jesus Christ the past 30 years, my faith is tested in new ways each morning I awake to parent this amazing boy with needs so different that mine.  And so it is there, in those quiet hours before dawn as I pour out my fears and read Psalm 139 that God speaks to me in a gentle whisper:  “I created this baby boy. I took care of this precious little one in a womb where he was not wanted. I carried him safely from a sterile hospital to a cold, dark, dirty orphanage. I had my angels surrounding him for two years before I placed him in your care. Do not think for one moment that I will ever leave him. I will never forsake him. I will continue to provide for him whether or not you can.”

And with those words so eloquently penned by the Psalmist, the fears that attempt to strangle me are pushed back into the dark caverns from which they came and I am able to face another day of raising this special child.

Psalm 139… Good News Translation (GNT)

You created every part of me;
    you put me together in my mother's womb.
I praise you because you are to be feared;
    all you do is strange and wonderful.
    I know it with all my heart.
When my bones were being formed,
    carefully put together in my mother's womb,
when I was growing there in secret,
    you knew that I was there—
      you saw me before I was born.
The days allotted to me
    had all been recorded in your book,
    before any of them ever began.

On Being Adequate

Are you the parent/caregiver of someone with disabilities? Some days it does feels hopeless. Some days are repetitively frustrating.  Some days are exhaustively exasperating. 

I love when I find “new” truths in God’s word. No matter how many times I read Scripture, it's awesome that I always stumble upon something that I’d overlooked in the past.

Take II Corinthians 3:4-6 for instance. “...such confidence we have through Christ toward God. Not that we are adequate in ourselves to consider anything as coming from ourselves, but our adequacy is from God, who also made us adequate a servants...”

Did God write that just for me, knowing that I would one day be a mom of a child with FASD?

Or did He write it for my son who has FASD?

I am NOT adequate in myself. I struggle daily asking God, “why me???”.

Not in a feeling sorry for myself kind of way, but in a sincere lack of self-confidence voice, being overwhelmed with the enormous, all-consuming responsibility that is involved in raising a child with FASD and disabilities.   Now I read these verses and it hits me: I don’t need to worry about it because I - in my own strength - am not adequate, nor will I ever be adequate.

BUT GOD. I love that phrase in scripture. BUT ...  It means, stop worrying and fretting because just ahead, in the next sentence, there will be an amazing unexplainable, almost incomprehensible truth, that will eliminate all need for doubt if it is just believed and acted upon. So take a deep breath at the “but” and read on….."but my adequacy is from God who also made me adequate as a servant”.

There it is, plain and simple, written forever in black and white. My adequacy is from God!

Therein lies my confidence. I can parent this child because God made me adequate.  And not only did He make me adequate, He specifically made me adequate as a servant.  The definition of  “servant” holds another one of those Greek mysteries which the English language has demolished. It does not mean servile as a slave, but voluntary as an attendant, a reference to the service or advantage rendered to another (as in menial tasks).

I’ve been pondering the implication of these verses for days. My role as the mother of a child with FASD and disabilities is so clearly defined in these verses.

Could there be a more accurate description of what a parent of a child with FASD does than act as an attendant and perform menial tasks. I think not. I am my son’s external brain! I daily assist him with the most menial tasks...
Yes, the underpants go on before the shorts. 
Yes, the milk always goes in the fridge.
Really! There is this thing in our house called a toilet.
No, you cannot play in the snow in just a swimsuit.

Are you the parent/caregiver of someone with disabilities? Some days it feels hopeless. Some days are repetitively frustrating.  Some days are exhaustively exasperating.

Be encouraged that your life is an “advantage rendered to another”. Yes, YOU are adequate to take care of your child! YOU are a blessing.

Find strength and meaning in this: “Not that we are adequate in ourselves to consider anything as coming from ourselves, but our adequacy is from God, who also made us adequate a servants...”

An Inconvenient Life

I read that if people with special needs were classified as a race, they would together be the largest unreached peoples in the world.  In my average size city there are at least 6 elementary schools, 3 middle schools and 3 high schools. Each of those public schools have a Life Skills class with approximately 10 kids full-time. That means that at a minimum there are 120 families with special needs and realistically twice that many families if all the kids on IEP’s, at all schools were counted. A low estimate is there are around 200 hundred families with no church loving them or supporting them emotionally…but there are over 81 churches listed in the public directory. Yet, sadly, not one of them is making an effort to reach this “people group”. These local churches are overlooking an enormous market right out their front window: families with special needs.

I know this for a fact because we have contacted many of them and specifically attended 4 of them with the hope they were interested in starting a disability outreach. The disappointment for us, is that they all talked about it from their mission statements and prayers and speeches: they want to embrace diversity and reach all people and be missionaries… yet in their efforts to reach the world they’ve stumbled over us at their doorstep and kept right on walking.

We have been an inconvenience to many churches; they honestly don’t know what to do with families like mine.

Being an inconvenience is something we have experienced in many places such as restaurants, social outings, birthday parties, classrooms, shops… but the church - - really, it just baffles my mind.  This is supposed to be a place of refuge, yet it is where we have experienced our deepest hurts. Over the years there have been two churches which we attended regularly but were eventually told, “unless you sit with your son in sunday school, he cannot come back.” Tears of disappointment mingle with righteous indignation as those words pierce my deepest soul. As acid poured on an open wound, the rawest pain was at both of those churches we counted the pastor and his wife as truly some of our dearest friends. And while it was not the pastor that asked us to leave, he did not make any effort to begin a disability ministry or intercede on our behalf. Pain does not go much deeper as we dishearteningly left those churches.

Hurt swells and rises in my throat when I know that I am not alone in my experience. If I dare to raise the subject to another family with special needs, I am met with tears of empathy. Why? Why must those who are different be an inconvenience?  Is not the church the safe haven, the hospital for the weak?

On Sunday mornings I wake up with dread. Should I take my child to Sunday School? Should I leave him with me in the service? Should we just stay home? Sunday mornings are an enormous hassle; it’s often not worth the frustration. Is it really worth the effort to go church, to sit with our bodies tense, our minds not relaxed for a nanosecond…waiting to hear the squeal of our child from down the hallway…knowing it is a matter of minutes until the flash of the beeper lights red…  cringing as our number is broadcast on the call box… getting an evil eye from those around us…letting out a deep sigh of discouragement as once again we are called upon to go retrieve our child.

My child needs care and attention 24/7. Twenty four hours a day, seven days a week I am called by God to care for and love my child and I do so willingly and without reserve. By the dawn of Sunday morning my soul is craving after God, my emotions are frazzled, I am on the verge of tears, my body is weary. I want to sit in a pew for 90 minutes and breathe in the sweet peace of the Holy Spirit reviving my parched soul. I want my spirit and heart encouraged and refreshed for a week ahead. I want to know that for 90 minutes I can sit calmly and soak in the truth of God, my mind at peace knowing my child is safe and loved in the same building. Why does the church not feel the cry of  families such as mine?

It grieves me deeply that as I interact with families of special needs all across the United States and beyond, I hear firsthand how many of them are angry at the church, how many of them have been rejected by the church, how many of them have been asked to leave a service. It is just so wrong on every level! Oh how the heart of God must be breaking for His precious children who are desperately craving connection, but are being brushed aside.

Clearly scripture says “Pure and undefiled religion before our God and Father is this: to look after orphans and widows in their distress”, and while the “disabled” are not specific in that clause, the heart of Jesus was indeed drawn towards this people group.  Read in the four gospels of Matthew, Mark, Luke and John how often Jesus healed one with seizures, one possessed in the mind, another broken in body or those overcome by physical disorder.  Where, I humbly ask is the heart of Jesus via the church for my child, for my family?

Oh Church, take off your “WWJD” bracelets and charms and look around you! Look out your rose colored windows and allow your eyes to linger on the hundreds of hurting families right in your neighborhood. Moms, dads, caregivers… craving a simple 90 minutes of peace and reflection and spiritual renewal. 

I promise the local church, if they would open their doors, their hearts, their arms to those with special needs, they would not even need pursue them - - families would flock to your church! Then those who know nothing of the saving grace of God, would see Him alive via the action of the church, and they would be unable to deny His love. And those who already know the One who loves without boundaries, would be encouraged and renewed each week!

Whether you read this as a family seeking 90 minutes of peace, or as a church member needing to offer hope… my prayer is that in my child’s lifetime this inconvenience will soon end and never again will a family leave a church feeling more discouraged than when they entered.

On Being a Lifeline

We floated the river this weekend as temps reached a scorching 91 degrees - which here in the high desert is HOT, HOT, HOT. As such we were joined by hundreds, honestly closer to a thousand or so of other like-minded, over-heated residents of this outdoor adventure community.

There were couples on air mattresses, grandmas in kayaks, rednecks soaking up skin cancer and lung cancer, SUP's a plenty and families on rafts roped to kids in tubes. The latter would include us: 1 large float tied to 2 smaller floats.

About halfway down the river, after being tugged on continually by my son and his rope, I looked at my husband and said ,"Just once in my life I’d like to float this river without having someone tied to me and constantly pulling me. I just want to relax and float free".

He laughed and replied," Ummm, sweetie, that's your life everyday isn't it."

An epiphany! Right there in the river surrounded by water, noise, sun and people.  Yes, that IS my life!

I am tied to my son.
There is no relaxing.  There is no free float.

Today on the float he hung on to my rope and wouldn't relax or let go for one moment. I did loose my cool with him after being tugged the wrong way one too many times: I threatened to untie the rope if he didn't stop.

And so it is in daily life.  He rarely let's me out of his sight without panicking. To go to school, yes. But for me to go on a date or overnight -- the rope just got jerked involuntarily out of his hand and he fights anyone or anything to regain control and reattach to me.

I realize that indeed he does need the rope attached to me for many safety reasons:  like having no judgment. None. Zero discernment. No ability to differentiate between a stranger and a friend. Not being able to learn from a mistake -- YES fire always burns, NO you cannot eat the dog food or drink from the toilet, NO you cannot walk in front of a speeding car or swing or bike.

I try so hard to be his lifeline and give him the security he needs.  But I do loose my cool.  There are days when I just want to yell at him, "what is wrong with you??? Argh!! Why can't you just cooperate for one afternoon? Is that really so much to ask?"


I know the answer even before the thought or words flow from my tongue.  I need to remind myself that he is developmentally 4 or 5 years younger than his chronological age. His disabilities are invisible, yet oh so very, very real!  He is so handsome, he looks so innocent and "normal". He has no outward signs of FASD. Sometimes I think I need to make him wear a t-shirt emblazoned with the message " Be patient with me I have FASD".

Even on long hot summer days it's good that God gave me such a patient and amazing husband to gently make me aware of the importance, the high calling of being a lifeline, the reality of being tied to someone who so desperately needs me to be there for him.

I think I'll go make a rope bracelet as a reminder.

A Mothers Theology

I love driving my youngest anywhere because he sits in his car seat and sings songs he has made up. He sings about whatever is on his mind, creating his own little melodies, singing usually off key, but oh so content.  The songs are always from his heart so I’ve learned to just listen quietly without correcting or commenting until he is finished.

On a dreary still-winter, not-quite-spring morning as we drove to school his musical composition began with the long sad walk down the Via Dolorosa, how the mean people put Jesus on a cross and stuck him with a spear, how a lady named Mary came to see him (pause, right mom, her name was Mary?), how the angel Gabrielle came and said don’t be sad the Holy Spirit took him away, then Gabrielle (that's not a typo - - he INSISTS the angel is a girl!) left and went to another Mary and told her to name her baby Jesus but they went to the town and everyone was closed so they found that place with hay and made a bed for her baby, then Joseph went to Egypt where the Pharaoh was mean and made the people slaves but the momma put the baby in the basket and the princess saved him and he grew up and went and saw the bush on fire and God said “TAKE OFF YOUR SHOES, THIS IS HOLY GROUND” so he did and he heard God say I AM. So he took off his shoes and went and saved the people and they came to the sea and Moses put out his hand and the sea opened and the people went across but the chariots drowned but the people complained. And God was mad. And the  people complained again and its so sad.

And…. then we pulled into the school parking lot and I had to interrupt him. Granted, his chronology was quite out of sync, but his knowledge was right on track.  Before we said our morning drop-off prayer, I made a point of telling him how proud I was of him singing from his heart what he knows about Jesus, and I prayed for him to share his love of Jesus with his friends so they could have Jesus live in their heart someday.

All the while he sang his composition, my heart rejoiced that he is singing about Jesus.

Now remember, all of this took place in the course of 10 minutes. 

As I dropped them at school, in the solitude of the car, the Holy Spirit quietly encouraged me with these thoughts:  my children are listening, my children are learning, my children pick up their theology from me. Their theology is whatever I live for them. Be encouraged as a mom: the years of reading Bible adventures, of repeating Catechism with them, of memorizing Scripture, of praying for them….it is not in vain. 

Do not fret over new diagnosis from doctors, do not grow weary over hours spent in therapist offices. Do not grow tired over the never ending pile of laundry and the dirty floors. Keep on training even when it appears that all they do is fight and whine and need attention. No, they have not kneeled down by their bed and asked Jesus into their heart, but they are soaking up my theology daily. I am laying a foundation for them that all the gates of hell cannot shake.  Do not be discouraged dear mother, take hope and peace in the power of the Holy Spirit to move in their hearts, even at this young age.