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.

A New Path

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

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

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

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

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

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

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

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

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

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


Part 2

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

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

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

Part 3

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

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

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

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

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

Part 4

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

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

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

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

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

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.

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.

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 child...in 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.)

WELCOME TO HOLLAND

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.

Jealousy, Resentment or Reality?

I want to establish this in your mind before I begin sharing: my husband is a generous man. Whether it’s a stranger or a family member, he will offer assistance when needed. Sometimes money; sometimes muscles.  And he's been known to bring home flowers on a Tuesday just because he loves me. I drive a car that keeps me & my kids safe in any weather. I've been showered with my fair share of bling.

Recently, as a gift, a girlfriends husband gave her a week away at a beach-house with her girlfriend.
At the beach.
With a girlfriend.
With no children.
For a week. All pre-arranged as a surprise for her.

I can hardly fathom the concept.
Jealousy rises ferociously in my heart.
Not because this friends husband set the bar so high, it’s simply that this is gift is so far out of my reach, there is no use longing for it.
But I do.   I long for it to the point of silent tears flowing across my cheek.
Its something I’ve wished for, hoped for, for quite some time.  Eons before her husband handed her this gift, my heart had craved time alone at the beach.
Yet, maybe I'm not so jealous as I am a bit angry and resentful.

The fact is, I have a little boy with a list of medical and neurological disabilities, and I’m not sure my family would survive if I were gone more than 36 hours.
I don't know what it's like to go away - - to leave and actually leave my responsibilities behind.
My sons disability is my life.
He is dependent on me in ways that go beyond the Webster defined meaning of codependency and attachment.
Oh, I have tried to remove myself for a couple days: I've gone to a women's retreat for a weekend and left my son. Something always goes terribly wrong. And the reaction it causes in my son continues for days, sometimes weeks, after I return.

My generous, wonderful husband and I have been planning on going to Greece to celebrate our milestone anniversary. We've planned and saved, bought guidebooks & maps, pinned ideas and hoped with anticipation.
The reality is setting in: I left dear son for two nights with hubby a few months past and all hell broke loose with our dearly loved & trusted respite care provider. It was no fault of hers. It was all the little guys doing.
I left for 1 night last month and the backlash was horrendous at home and at school.
If I can’t leave my city, how can we possibly go to Greece???

This is a struggle for me.

 This is a part of motherhood not mentioned in scripture or parenting books.
This goes beyond the normal motherhood lack-of-sleep, tired, always putting-yourself-last-for-the-sake-of-your-children syndrome.
Raising a child with special needs requires far more.
And to be honest, there are days when I just don't have it in my selfish human nature.

Do I want to get away by myself for an entire week of writing, meditating, reading? Oh my! Absolutely! I can't even fathom the idea.

Do I want to be with my husband  on an island in Greece with zero (0) children, no phones and no work?
Yes! A thousand times yes!

The reality is this: it’s not my season in life. And the harsher truth is this: it may NEVER be my season in life, where my son is concerned.

I wrestle with my selfish sinful heart daily. Ok, let's be honest...  if I don't spend time with God on a regular basis, I'm not worth anything to my family who so desperately needs me.

My child needs me in ways that my friends family will never depend on her.  He needs me in ways that I will never, ever be able to communicate to my girlfriends. 

For now, for this day, for this moment… holding my sons small hand and guiding him through life is my calling. And if I look into his eyes and remember that his life is a gift to me, that he is an eternal soul who needs my love and wisdom, who desperately needs me to be his external brain… then the jealousy will melt away like the snow falling out my window.

Still, I'm not giving up all hope that one day the white sand and blue oceans of Greece may be mine.

I Don't Ask For These Days

I read in James in the morning “if any of you lack wisdom let him ask of God who gives generously and without reproach…”

I prayed for wisdom in the morning.
I prayed that I would be generous and without reproach toward my son today.

I didn’t know in the early morning quiet how desperately I would need that prayer by the afternoon.

It’s raining again today. All day.  A wet, cold, slushy miserable rain; my sons body cannot handle a change in barometric pressure.  The more miserable and penetrating the rain, the more miserable my son seems to be.  Today was such a day for him at school.  Such an afternoon at home.

He is in the quiet room, working on writing…and not at all quietly. 
His face is red and blotchy and tear-stained. His nose dripping faster than the tears. 
He is telling himself angrily “I can’t do it” and repeating “what? what? what?.  I can’t write”.

At school he refused to go to reading group and refused to write.
I have him writing sentences while I clean the floors and now sit to journal my prayers.

I have held him quietly.
I have prayed with him.
I have rocked him.
Now he must face his consequence: refusing to work at school means missing out on play time at home and finishing the school work, plus writing more sentences.  Correctly. Not angry and sloppy.

I know he can do it. I know is able.
His first sentences are perfect and prove his ability. He thinks his consequence is done with two sentences.
I tell him he has two more to write. His next sentences show his anger.

It has been over 45 minutes of him sobbing and crying.
I hold him again to calm him. I leave him to write.
I sit in my office. My own heart is sobbing, my face is tear stained as well.
I sit. Praying. Crying. Journaling.
At times like these it is all I can do to cling to scripture.

A Bear of Very Little Brain

We've been reading The House at Pooh Corner.  I can't help but ponder this quote from chapter 6:
...when you are a Bear of Very Little Brain, and you Think of Things, you find sometimes that a Thing which seemed very Thingish inside you is quite different when it gets out into the open and has other people looking at it...."

I just see that as expressing what I am assuming my son must feel quite often. I am making that assumption based on his apparent lack of social skills and how often he is awkward or says or does awkward things.

I often wonder if in his mind these Things are not awkward; they make perfect sense to him inside his brain. But when he acts or speaks upon those very Things all of the sudden he appears quite foolish. Like at school where it is most obvious that he is different from the other children when placed in social settings.

My heart catches in my throat each time I watch it play itself out. This boy of mine truly is like Pooh bear in many ways and I, his Christopher Robin, loving him always and helping him make sense of his nonsense. My child often acts like a Bear of Very Little Brain: my son, like Pooh, is always friendly and never thinks anyone is a stranger; he wanders happily & innocently in a world of his own making; he never thinks ill of anyone; he loves hugs; he loves sweet honey; he is rumbly tumbly; he hums little tunes and makes up songs of Very Little Sense.

I write this in the most kind manner when I say he is of Very Little Brain, because, truly, that is what Fetal Alcohol does to a persons brain. It destroys it forever. Permanently.

And I say it with compassion and sorrow that it has to be so because FASD is 100% preventable. Yet I know, even with his FASD,  he is an amazing, loveable Pooh Bear boy. And I know God has a hope and a future for him.

I sure do love this child!

The Rose Colored Glasses of FASD

As we quieted down for our bedtime routine, my son lay peacefully calm and still with his head on his pillow, cheeks flushed from a full day of sunshine and play, three fingers in his mouth sucking away self-soothingly. He listened quietly as his brother prayed, then it was his turn. He wrapped up his prayers with a... “Thank you God for a WONDERFUL day. (His emphasis on the “wonderful”, not mine.) And thank you for playing the Star Wars matching game and for our food...Amen”.

My heart softened with love pouring over for this precious angel holding my hand, wrapping his arms around my neck, wanting kisses on his cheeks.  Oh! If you had only been a fly on the wall in my house from noon until 6:30 pm.  There was no “wonderful day” taking place. There was frustration flowing.

He couldn’t do anything ‘right’ today. Constantly teasing his brother, having a rough fast-engine with the neighbor kids, moving, moving, moving his body ALL day long. I gave him 1 minute time-ins to sit and catch his breath; 1 minute hugs to calm his body. I increased the down time breaks to 5 minutes. As soon as the time was up and we had discussed “is it ok to ever throw rocks?” “no mom, I get it, ok”  Yeah. Okay for all of the 5 seconds it took him to fly out the door. And throw rocks again. 

Constantly redirecting and working our way up to 10 minute in the house breaks to calm him from the chase game going on out in the front yard with the neighbor kids. Only to have the break end with us talking about reminders of not grabbing someones toy and not hitting other kids with hot wheel tracks....to him walking out the door after four...count them...1..2..3..4..separate reminders not to do something....to him immediately doing it and having to be redirected into the house. Again.

Yeah. That was the “wonderful day” we had.

What frustrates the dickens out of me is also what draws me into loving him so deeply. His childlike rose colored glasses that remember only the great things of the day...rolling with the dog on the lawn, catching a cricket with his brother, playing a board game with mom, reading stories before lights out.

I learn from him again today: Breathe deeply. Self soothe. Relish meals. Praise God for the joys of the day. Keep the good things foremost in my mind. And sleep hard.