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.