Saturday, August 30, 2014

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?

Thursday, March 20, 2014

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

Monday, February 24, 2014

Through his Eyes

I watch from my window as the snow falls. Last winter, this snow was a normal, weekly occurrence in our lives; this year we are living thousands of miles away, in a land that rarely sees snow, and has now declared a state of emergency (no, literally, they have!) because there is almost 4 inches of snow.  Now the neighborhood kids have gathered in our cul-de-sac, right across from our house, the location of the steepest driveway, now turned sledding hill.

Some of the boys walked by and my son, Snow Boy, like most tween boys, thought it would be fun to throw a snowball --  after all, eating snow & throwing snow are his most favorite winter sports! The other boys threw back. Snow Boy threw again, but managed to splatter ice into one of the younger boys eye. Unintentionally. The neighbor boy cried. Hysterically cried.

Snow Boy threw more at the other kids, even though they said stop. They told him to go away. He laughed and ran right into the midst of them. The little boy went across the street to tell his mom - which, of course, triggered the reaction in Snow Boy that it was now time to flee.

I hear my son yelling "cry baby" and "you liar, you said you'd play".  I go out to calm him, and try to explain to the other boys that when you ask him to play, he is going to play. Continually play. He will not stop just because you say stop; you may be tired, but he is just getting into it.

In the meantime, my Snow Boy continues screaming to the other kids, "you lied! you lied! you said you'd play! you're a cry baby." I firmly tell him while giving him the mommy-evil-eye, "shut your mouth now and walk away”.  I make sure the other boy is ok; the neighbor mom comes out and say's ..."its fine, it happens in the snow, just be careful when you throw snow." She is not upset. The neighbor has no visible evidence of injury on his face.

I take my Snow Boy inside. He has melted into tears. I sit across the table from my son, trying to be patient, trying to help him calm his body, attempting to have a rational discussion, trying to grasp for the words that will make a connection with him. He sits there with eyes red, a blotchy, puffy face swollen from tears mingled with a runny nose, hiccuping as he tries to tell me about it.

What do you do when you realize your kid has been labeled by the other kids as the neighborhood bully?

I talk. He cries.

He talks. I listen.

My words are empty to him. He doesn't get it.  In his mind, this is black & white: “There is snow, I like to throw snow, everyone must like to throw snow. Getting hit in the face with snow doesn't bother me, it must not bother anyone. I have a high pain tolerance; everyone must have a high pain tolerance”.

I try to help him understand that when he sees someone crying, he should stop and ask if they are hurt. I explain that when someone is crying, he should stop and say "I'm sorry it was an accident, are you ok?".  Instead he laughs and throws again, oblivious to their pain.

My heart aches for him.

I see the intense pain in his eyes, as he truly does not understand why the kids are angry at him. He truly doesn't know why they won't play with him. I gently try to be honest and point out to him the difference in his actions and theirs. It’s not making a connection with him.  He just wants to play; he longs for a friend.

This boy. This FASD. This enigma. My soul pleads for answers, for breakthroughs in communication. I want to scream to the world: My son is not mean! My son is not an angry boy! My son is most definitely not a bully!

But all the world can see is the boy who has thrown rocks, the boy who has whacked others with a stick, the boy who has yelled names, the boy who shoves, the boys who throws snowballs, the boy who is different. The neighborhood bully.

They don't see through his eyes.

Through his eyes: he whacked because you all had light-sabers (sticks) and he wanted one too...only his pain tolerance is incredibly high, so getting whacked with a stick is all part of the game if you want to be a his eyes.

Through his eyes: he called you a name because you said something off handed in sarcasm or a joke. He only thinks in black and white, in the present, in his eyes.

Through his eyes: you had the football and it was his job as the defense to do whatever it takes to get the ball to his team....even if that is taking you down. It doesn't matter that this is Nerf football and you are 4 years younger than him.

What I see in his eyes as I sit across the table is a tender-hearted little boy in the body of a tween, who feels alone and ostracized from everyone else. I see a child who doesn't understand why all the kids, of all ages, want to play with his younger sibling, but not with him. I see rejection and confusion.  And I want to shelter and protect.

I sigh again. I plead silently for words to comfort and ease his pain.

I open my arms and hold him on my lap, rocking with him in a warm embrace.  It is enough to help him through this moment. It is enough grace for now. Still, I pray without ceasing that someday others will see through his eyes.

Friday, October 11, 2013



Such a simple word.

I really had no grasp of the depth of the meaning until my son arrived in my life: disabilities and all.

Ordinary is a gift.
Ordinary should never be overlooked or taken for granted.

This morning, as we had a few extra rare moments of empty time before heading out to school, my son was tossing his lighted-eye-ball-glow-in-the-dark-glitter-bouncy ball in the air.  I stopped my hurry and puttering of being a mom and said “toss it to me”.

A huge smile came over his face and he tossed me the ball. He squealed with delight as I caught it and tossed it back to him. Joy flooded his face as we continued to toss the ball for 5 minutes. He laughed loudly, freely. He was thrilled I stopped to play toss with him.

Ordinary. There is no such thing when you have a child with disabilities.
One never knows what will happen from one moment to the next.
An ordinary ball. An extra ordinary child. A few moments. It all adds up to a gift.

I’m thankful God gave me this boy to teach me that there is nothing “ordinary” about life.

Wednesday, September 25, 2013

What I Know

I write not because I have the cure or the answers.
I write because it is all I know.

I know my son does not understand his FASD. And what he does understand he does not like.
He is frustrated with himself and with the crazy stimuli of this world constantly bombarding him.

Why him?
And why me for his mother? Who am I?
I am not wealthy: I cannot pour money into a cause like Donald Trump, Bono or Jenny McCarthy.
I do not have the clout of Oprah.
Nor the knowledge of Diane Malbin.

I am me.
Middle class, average mom.
Easily distracted.

I know that God did not want his birthmother to drink and I know God did not want my son to have FASD…yet, I know that God chose to place this specific child, with his specific disabilities, into my family, as my son, so that I could learn patience.

So I would come to rely on God.

So I would take up the mantle of an Alcohol Related Neurological Disorder... that I would become passionate for a cause that I would otherwise view as an inconvenience and interruption… that I could educate those in my world of the life-long, incurable - -yet 100% preventable - - disability of FASD.

This I know. 

Tuesday, June 11, 2013

A Matter of Perspective

Three days ago I logged on to my MacJournal and wrote an entry about celebrating the 10 years of my Boy Wonders life. Reminiscing and laughing over all the precious moments we’ve shared with him.

Little did I know just a few short hours after writing that entry, I would be in a clinic listening to a doctor attempting to diagnosis my sons allergic reaction, telling myself to breathe calmly without panic, all the while mentally praying, begging God to spare Boy Wonders life. Nor did I realize that I would spend half of the next day, and the following, back at the clinic while my boy was being given an IV and heavy doses of antibiotics to aggressively combat the infection raging through his lymph nodes. All because of this little plant.

Oh how life changes so quickly.

Here I am 2 days later, biting my tongue, ready to send him to the woodshed and give him a smack on his rump, while he is screaming at the top of his lungs, melting down. He’s angry because something didn’t go his way; he’s frustrated he can’t get his air rocket out of a 75 foot tall pine tree. When I approach him while calling his name, he looks at me and blatantly ignores me as he angrily throws rocks at the street and treehouse. When I ask him to come in and calm down on the step, he stomps and screams and rips the ace-bandages and sling from his arm. When I ask him to move outside to the back porch step until he is calm, he rages and kicks all the patio furniture and rips his clothing. When I attempt to talk to him he screams at me in frustration.

Oh how life changes so quickly.

He’s on the back patio screaming; I’m in the kitchen fuming and talking to God… “Seriously God, I was begging and pleading with You just days ago to save this childs life. I went 3 nights with no sleep, constantly monitoring his breathing and temperature. For this?!? Really!?!“  A few other conversations raced through my mind while I was attempting to make a decent dinner for our family, get my husband ready to leave town, pay attention to lil brother…and now drop everything to deal with the hysteria of Boy Wonder who lost his toy rocket. Big sigh. Big complaints going through my head. Big sacrifices I make for this child. I don’t deserve this.

Then a still small voice from God whispered to me, “Wait a minute, dear girl, you're looking at this all wrong. Instead of rationalizing that three days ago you were begging for his life and now you're angry at him for throwing your plans out of sync again, you need to change your thoughts and have a new perspective.  You should be thinking, “I blessed you. I saved your sons life. Why are you pulling your hair out over this? I saved his life because I need you to guide him in the days ahead.  I need you to think eternally. This two hour long meltdown is just a small scene on the landscape canvas I’m painting of your son’s life. This too shall pass. Put your boots on: you're going in. This is a moment of grace and sacrificial love you are able to give to Boy Wonder. Don’t miss it.”

Oh how life changes so quickly.

I went to bed praying for a bigger perspective, for more grace, for deeper love, for a thankful heart to count my blessings while I have them.

Thursday, May 23, 2013

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.


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.