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.

Thursday, May 9, 2013

A Mothers Prayer

Raising a child with disabilities can be so draining.  Can I just say those words to you who are on this journey with me...because I know you get it! You know I'm not complaining. You know that tired feeling when its only 9 am and you've already changed soiled sheets AND soiled clothes, had 3 melt-downs and spilt breakfast on the floor.

It was on one of "those" days that I flung myself into my worn red-leather rocker and open my Bible to Psalm 119 with a sigh and heavy heart.  I love when God pours water into my parched soul, flooding me with the relief I so deperately long for.  As I read these verses, they resonated so deeply in me as hope for my son filled my heart...

Psalm 119: 73-80 became my prayer:

Your hands have made me and fashioned me; give me understanding that I may learn your commandments.

Oh God, I pray that my son will know that God made him.... made him exactly like he is - disabilities and all!

Those who fear You shall see me and rejoice, because I have hoped in your word.
I pray that others would see God reflected in my son's life. That this boy would hope in God. Not in a cure. Not in therapy. Not in medication alone.  

I know O Lord that your rules are righteous and that in faithfulness you have afflicted me.
I pray that even when life is hard and consequences seem to overwhelm him.... when he feels like life is unfair and that he always has restrictions...even then that my son would know that God is fair.
That he would know that God has allowed this affliction - this horrible disability...and although I don't understand why, that this boy will trust that God is righteous and faithful!

Let your steadfast love comfort me according to your promise to your servant.
God, comfort my son! On all the long days when he is lonely, be his friend. On stressful days when he is confused, be his wisdom. On ordinary days when he is tempted in his innocence and ignorance, be his compass, be his conscious.  In moments of discouragement and frustration, be his steadfast love.

Let your mercy come to me that I may live; for your law is my delight.
Give my son mercy. Give him grace and strength for each new day! Let him look to You, God. Help me to help him hide Your word in his heart, that You would be his delight. In a confusing materialistic world, be his desire.

Let the insolent be put to shame because they have wronged me with falsehood; as for me, I will meditate on your precepts.
This is my prayer: that those who shun my child, those who prey on his ignorance and his innocence be put to shame.  Let those who tease him be punished.  Allow Your words to penetrate his mind so that he will meditate on Your truth.  May Your precepts give him courage.

Let those who fear you turn to me, that they may know your testimonies.
Most of all God, I pray that You will be glorified in his life. Let others see Grace & Hope when they see what this little boy has overcome.

May my heart be blameless in your statues, that I may not be put to shame
Keep this boy pure in heart and ever child like in his faith. Give my boy confidence in You that he may never feel ashamed.

Most of all, I pray that I,  as his parent --in my confusion, in my misunderstanding of his disability - would ever cause his heart to harden.   May I be faithful to follow your statues as I raise him. 

Thursday, March 14, 2013

Climbing Mt. Everest

 Sometimes life presents situations which seem insurmountable.  To a person with disabilities, even small molehills can become as daunting as climbing Mt. Everest.
Do you have a Mt. Everest in your life?
Is there a challenge surrounding the disabilities of someone you love that make it seem almost impossible to overcome?

Today I write to brag a little about an energetic teen boy I am honored to know. A boy who loves football. A boy who loves to laugh. A boy who loves his siblings. A boy, almost 16. A boy who was born with Down Syndrome.  

This teenager is amazing in so many unique ways, but he accomplished what many healthy, average people will never do (myself included!).  Today this boy reached Mt. Everest Base Camp! 

Yes, THE Mt. Everest. In Nepal. Covered in snow.
Yes! Eli, a boy with Down Syndrome. 

Why this incredible, heartwarming story isn't on the front page of every newspaper and every morning talk show, I don't know.  They are all missing the greatest gem of a story!

In this world of shootings & looting's and gloom & doom, it sure seems like a little dose of positive, upbeat, encouraging news would be an AMAZING headline for any talk show.  Trekking all the way to Mt. Everest Base Camp is a phenomenal feat for a boy with Down Syndrome!

Still the story gets even better: Eli made this trek to raise money for The Elisha Foundation (TEF) to reach out to more families with disabilities.  You can read more about Trek4Tef and The Elisha Foundation by clicking these links and going to their websites. (BTW, it's not too late for anyone to make a donation.)

TEF has personally blessed my family by hosting a Respite Care weekend which included 1:1 care for my son, fun activities for siblings, time alone for me and my hubby, and times of encouragement with other families who are raising children with disabilities, lodging and meals.  If you are reading this blog because you are a caretaker of a dear person with disabilities, then I need not even explain how utterly priceless a weekend like this can be!

TEF has a desire to hold retreats such as this across the country. TEF desires to show that those with disabilities have been created in the image of God, just as those without. If you want to learn more about TEF and the family behind it, please read their blogs, follow them on facebook, twitter or instagram.

Eli trekking to Mt. Everest Base Camp challenges me to never give up on dreaming for my child in spite of his disabilities. I hope his story encourages you too!

Wednesday, March 13, 2013

The Fingerprints of God

We had another one of those days: days when frustration and anger fill my child with rage at a disability he doesn’t understand.
Another day when he screams at me, “why do I have to have this disability?”.

The words quickly swell in my head… because a woman chose to drink while she was pregnant…because sin is rampant in this world…because we are living in a world that is not heaven.
But he’s too young for any of those logical, truthful answers.
My heart grieves for him. I don’t always understand the Fetal Alcohol either.

I know at this moment what he’s longing for is comfort for solace, for acceptance, for love.
So I hold him. I rock him close.
I cry with him and tell him I am so, so sorry.
I tell him I am on his team and we will fight through this unknown together.
And I whisper to him words from a song I love….

“Never has there been and never again
Will there be another you
Fashioned by God's hand
And perfectly planned
To be just who you are
And what He's been creating
Since the first beat of your heart
Is a living breathing priceless work of art and...

Just look at you
You're a wonder in the making
Oh, and God's not through, no
In fact, He's just getting started and…

I can see the fingerprints of God
When I look at you
I can see the fingerprints of God
And I know it's true
You're a masterpiece
That all creation quietly applauds
And you're covered with the fingerprints of God”

Thank you Steven Curtis Chapman for penning the words to Fingerprints of God from your heart so many years ago. My son finds solace through this music and for that, I am ever grateful.

Thursday, February 21, 2013

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.

Wednesday, January 30, 2013

When Life Isn't as Planned

As a young girl I had grandiose dreams of being a mom, raising a house full of children, and making a home into a castle for the man of my dreams. Somewhere along the way those plans morphed to include having a big house set at the foot of the mountains with lots of open sky for boys, ponies for girls, free range chickens and home grown veggies. I saw trees and fields streching for miles with space for orphaned children seeking hope to grow wild and free within the love of a family. God planted the seeds of adoption in my heart and nurtured them gently long before I realized I would need them. 

Of course my dreams were a little fuzzy. I eventually married my prince who turned out to be a farm boy and I learned that ponies don't just roam...they need care and grooming, that chickens are stinky and messy, and that veggies only grow with hours of sweat from the tired farmer.

And most disillusioning of all, our castle remained empty. Inspite of intense prayers and deepest longings, in the quest for expensive doctors and treatments those yearnings were left unanswered. Reality seemed a far cry from dreams of younger days. 

"For I know the plans I have for you”—this is the Lord’s declaration—“plans for your welfare, not for disaster, to give you a future and a hope."

I have never had children born of my womb, but I have two precious boys born in my heart, born in the seeds God planted years and years ago. As I told some friends recently, they may not be mine biologically, but they are mine eternally.

I do live at the foot of majestic mountains under the bluest sky God ever created.   The path He set me on was not the plan of my choosing, it's required many a detour from the dreams of my youth. Raising a child with disabilities has been one of the most challenging tasks God ever assigned to me.

If I could take away my sons disability, I would. Absolutely, with no hesitation, I would.

Yet, the blessings, the lessons, the joy that has come to me because of his disabilities are ones I would otherwise be without.  It's not the life I planned. It's not what I expected or longed for all those years... but I rejoice in the gift of this the future and the hope that is in Christ.

I recently came across this poem which so beautifully describes my life. (I take the liberty of sharing it and would gladly link to the authors blog if anyone has information.)


c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Wednesday, January 2, 2013


I’ve been absent from posting for a while.  Not because I don’t have anything to share, but because the truth is life has been too much at times.

Raising a child with disabilities is not easy, in fact it is often very overwhelming to be the caretaker. Even moreso with a diagnosis as complicated as FASD: there is always the ADHD lurking about, and impulsivity often overtakes any shred of rationality, there is lack of judgement and no understanding of cause and effect, and there are Asperger characteristics mixed with Autistic tendencies. Nothing is black and white where FASD is involved. 

After 7 years of taking my much loved son to doctors and psychiatrists and therapists of every sort…. well, frankly, it was just too much during the month of September. I hit the end of my rope physically, emotionally and spiritually, and its taken me this long to pull myself together.  If it weren’t for my dear husband and 3 girlfriends who have kept a tight rein on me, praying and calling and jumping in with my kids, I’d be checked into a mental hospital myself. Instead I began meeting with my own set of professionals and became more transparent with these intimate friends.

So when December 14, 2012 blasted into the forefront of our daily lives, I observed the entire horrific event from a bit different perspective than most.

My mind has been pondering it all: reeling with sorrow for the families; feeling outrage that society/media/advertising has desensitized a generation of young people; hurting for the innocent school children now living in fear; but most of all pondering the nagging “what if’s” in the realm of mental health, especially for those with neurobehavioral disabilities.

I’ve read the viral blog posts, articles written from the Washington Post to the National Inquirer (who knew they still existed??) and the flurry of responses created. I question and ponder. I cry and pray.

You see most of all, my heart grieves not just for Nancy Lanza, but truly for the thousands of mothers like her around the world.  A mother who obviously loved her child. Just like me. A mother who at times fears for her child, and at moments is afraid of her child. To look in the eyes of the one you love with such intensity and not be able to reach them or protect them is the most discouraging, hopeless feeling of all.

My heart grieves because I wonder if she felt like I desperately did during the month of September: alone.

Raising a child with disabilities is frightening for so many reasons, but the feeling of being alone is the most despairing of all.

Did she have any friends? The news reports said 25 people came to her funeral. How sad. A mother is gunned down in her sleep by her son who she utterly loves and only 25 people grieve for her?

Where were her friends as she raised her son?
Did she have respite care to give her a break?
Did she have a counselor in which she could confide?
Did she have a relationship with God where she could pour out her heart like water in His presence?
Divorced from her husband, the boy without a much needed healthy male influence, who was there for her to lean on? 

As you read this, are you a caretaker who is struggling, who is exhausted and feels alone? Are there moments you cry for your child, feeling no hope? If so, be encouraged. Take hope for 2013.

I am not a professional, I am a mother of a child with neurobehavioral disabilities. I am a caretaker just like you. May I offer hope in the following ways:
  • call a local church
  • open up the Bible and seek wisdom
  • call a local disability network
  • tell a friend, dare to be vulnerable & ask for help
  • find a support group on Yahoo or Facebook related to your specific disability
  • contact ministries on the internet or Facebook such as:  Snappin Ministries or  Joni and Friends
  • write daily in a journal
  • contact a local counselor
As you begin a new year, my prayer is that no other mother ever go alone to face what Nancy Lanza did.  Let’s change that for the world beginning today. I would love to hear from you too.