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. 

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 today...today 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!

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.

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.

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.

Alone

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.

T-minus 2 days

My lofty goal of writing a post a day hit the wall of reality: kids, meals, school, laundry, spouse, groceries.   I may have been slowed down, but I’m not done writing yet…there are 2 more days until Sept 9th.


Here’s FACT # 4

FASD causes underlying changes in brain structure and function resulting in primary and secondary behavioral changes. 

Following are a few of the behaviors FASD causes:

• A person with FASD often acts first and is then able to see the problem after the fact. 

Effect on child:  Doing the action - - throwing, hitting, peeing pants, lying, touch/grab things -- triggers their memory that it was an inappropriate action/behavior.

• A person with FASD often has memory impairment.

Effect on child: They are forgetful & needs frequent reminders.

• A person with FASD often has difficulty learning from past experiences - repeats the same mistake over and over again in spite of increased punishment.

Effect on child: They often do not even understand the punishment and rarely makes the connection between the violation and the consequence.

• A person with FASD often has difficulty with abstract concepts.

Effect on child: They do not visualize anything.

• A person with FASD often has difficulty understanding safety vs. danger, friend vs. stranger, or distinguishing fantasy from reality.

Effect on child:  They will believe anything & walk away with anyone who is kind to them.

•  A person with FASD often has difficulty forming links and associations, often unable to apply a learned rule in a new setting.

Effect on child: Understands no throwing on the playground; doesn’t apply it to the classroom.

• A person with FASD often repeats rules verbatim, then fails to apply the rules.

Effect on child: They can tell you what’s expected, they just can’t apply what’s expected, especially when over-stimulated and excited.

•  A person with FASD is often prone to confabulation and lying. Lying is to deliver a false statement to another person which the speaking person knows is not the whole truth, intentionally. In psychology, confabulation is the spontaneous narrative report of events that never happened.

Effect on child:  They will blend actual events with imagination and/or stories heard without understanding the ramifications of their confabulation. Other times, they will boldface lie just as a 4-year old child would.

• A person with FASD may talk excessively, yet is unable to engage in a meaningful exchange.

Effect on child:  They may be unable to express emotions and will most often laugh while being disciplined - - they are not being disrespectful, they are frustrated and unable to express it.

•  A person with FASD often has the inability to do more than one task at a time.

Effect on child:   Choose reading, playing, coloring, going to the bathroom, or eating.


Did you just read that entire list?  If so, thanks for tracking with me.

Now read it again. Slowly.

Imagine that all of those primary behaviors were going on in your brain. All at once.

Imagine how frustrated and confused and overwhelmed you would feel. All the time.

Imagine there being no medication to slow down any of these affects. None.

Imagine these behaviors lasting your entire life.

Welcome to the devastation caused by FASD. Welcome to the world of my child and thousands like him.  Now do you begin to understand why I am so passionate about educating everyone about the dangers of drinking any alcohol while pregnant?

Help spread the word and prevent another child from ever living with this disability! Please take the time to pass this blog post on to at least 1 of your friends, link it back to your blog, share it on Facebook, or tweet it on Twitter.