CS Lewis once said that "grief is like the sky, it covers everything." In recent weeks, our family has found that this is so very true. It seems that there is no right or wrong way to travel this path of grief. I have created this blog in hopes that some day we will be able to look back on our journey and see written proof that our great God never leaves us. God is good all the time.

Celebrating Laynee

You might want to scroll to the bottom of this page and pause the music before playing this video.

Thursday, October 14, 2010

Less? Says Who?

October is Down Syndrome awareness month.  There have been many, many blogs circulating throughout the blog world, particularly among the Down Syndrome community.  Having been graced by the presence of Down Syndrome in our home, it is a subject of great passion for me.  Many people are aware of Down Syndrome only by the physical characteristics of those who are born with it.  People often look at one with DS and think that something is missing.  They may be called "slow" or just "not quite right."

The reality is that those born wih DS are not missing anything, in fact they are born with something extra.  They are not a "mistake", their extra "something," and the inner beauty that they possess can come only from the God who creates all things perfect.  The scientific term for Down Sydrome is "Trisomy 21."   Normally, at the time of conception a baby inherits genetic information from its parents in the form of 46 chromosomes: 23 from the mother and 23 from the father. Those with Down Syndrome get an extra chromosome 21 — for a total of 47 chromosomes instead of 46.  That, my friends is not a mistake....it is a masterpiece.  It is this extra chromosome that creates the physical characteristics that many know as Down Syndrome.  Here are some of the characteristics commonly seen in one who has Down Syndrome.  They present themselves in varying degrees and can be much more apparent in some than in others. 

Flattened back of head.

Attractive Almond-shaped eyes
Slightly flattened bridge across nose.
Smallish ears, positioned slightly lower on the head, with a small fold at the top of the ear.
Smallish mouth.
Slightly protruding tongue.
Horizontal crease in palm of hand .
Slightly shortened fingers.
The little finger curves inward .
Slightly enlarged gap between the big and second toes.
Slightly shortened toes.
Finally, as congenital heart defects are commone among babies with Down Syndrome, a chest scar is also commonly seen.

As I type these characteristics I am struck by the awesome awareness that my sweet Jalayne possessed every single one of these characteristics.  It was these things that helped to make her so incredibly perfect in our eyes but, more importantly, it was the joy and peace that exuded from her that made her so special.  There are characteristics in personality and developement that are commonly associated with Down Syndrome.  However, I refuse to stereotype them by creating a list of these traits.  People with Down Syndrome are unique and individual.  They have strengths and weaknesses just like any other human being. Jalayne was born with Down Syndrome, it's true!! But first and foremost she was born a child with great potential, a child with immense capacity to learn. She was created to be taught as well as to teach.  Her spirit  was one of an uncommon ability to love unconditionally.  I think of Jalayne as being part of  a "Limited Edition."  She came fully loaded with love, joy, laughter, peace and happiness.  She did not have less, she had more, much more!!!!!!!

I am drawn to many blogs of those who are blessed to have Down Syndrome in their homes.   I see pictures of these children and my heart constricts with longing for what we once had.  Many bloggers post videos and I am in awe of how very much these children have in common,.  The similarities are present in their voices, their eyes, their smiles, the way they walk, the way they sit, they way they sleep.  One blooger recently posted a video in which the child pointed to something.  Even the unique way that she pointed was so painfully like my sweet little Laynee.  These likenesses are not happenstance, they are a part of a God given beauty. 

I do not intend to paint a picture of a care free life with Down Syndrome.  This extra chromosome comes with many extra challenges.  These challenges come often in the form of heart conditions, feeding issues,  fine and gross motor delays,  speech, vision and hearing issues.  Children with Down Syndrome often come with thyroid and/or kidney disorders.  A silent beast called Leukemia complicates the lives of many of these beautiful children.  A life with Down Sydrome is not a walk in the park, in fact at times it is just plain hard. Yet as parents and family members, we meet these challenges as they come at us.  We grow, we learn, we stretch, we cry, we laugh......and ultimately---we become bigger and better than we ever could have without having a child with a little something extra, a child with Down Syndrome. 

It is estimated that in the United States, fetuses diagnosed with Down Syndrome are aborted at a rate upwards of 90%.   This number is staggering.  In Jalayne's case, her birth mother was unaware that she was pregnant until she went into labor.  I do not know what her choice would have been if she had known she carried a child with Down Syndrome.  However, my knees grow weak to think of all that we would have missed out on if Jalayne had been in that large percentage.  People have said many times that she was fortunate to have a family willing to adopt her.  That is wrong.  It is we who were blessed beyond measure.  There are those who refuse to believe that a mature woman could carry a child to term without knowing of her pregnancy.  To say such a thing is to doubt the divine, sovereign power of our creator.  He created Jalayne and he chose to pluck her from the 90 percent of those aborted.  He had a work for her to do on this earth.  Is it so impossible to believe that our mighty, powerful God could have kept the signs of pregnancy from a woman so that abortion could not become an option?  Jalayne was created perfect, she was born with a purpose.  God knew that I and my family and many others needed this little girl with an extra chromosome.  I am brought to my knees in complete humility when I think of the great lengths He went to in order that I might be her mommy, that Jim might be her daddy and that Jamee, Grant, Jade, Brock and Moise might be her sisters and brothers.  We were not given less, we were given so much more.  

I miss Jalayne with every beat of my heart and each breath I take is filled with the void she has left.  Every member in our houshold misses Down Syndrome with a nearly palpable ache.  Jalayne touched us and taught us not in spite of, but because of her extra 21st chromosome.  She was so radiantly beautiful in the purest, most simplistic form known to all man.  She was something extra special.  She was and always will be our extra special, forever love.

My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace

In October 2009, with aching heart
we walked in the Down Syndrome buddy walk
without our precious Jalayne Grace.

You've never seen so many guys in pink.
A mission that only Miss Jalayne
could accomplish

Missy, one of Laynee's buddies with something extra

111 friends and family members walked in Jalayne's memory
All were touched in some way by her "extra"

Down Syndrome
One of the single most beautiful
pieces of our life.

The Beatitudes of theExceptional Child
 by Andre Masse C.S. Masse
Blessed are you who take time to listen to
difficult speech for you help us to know that
 if we persevere we can be understood.
Blessed are you who walk with us in public places

 and ignore the stares of strangers for in your companionship
we find havens of relaxation.

Blessed are you who never bid us to "hurry up" and more blessed you
who do not snatch our tasks from our hands to do them for us,
for often we need time more than help.

Blessed are you who stand beside us as we enter new
and untried ventures for our failures will be outweighed
by the times when we surpise ourselves and you.

Blessed are you who ask for our help
for our greatest need is to be needed.

Blessed are you who help us with the graciousness of Christ
Who did not bruise the reed and quench the flax
for often we need help we cannot ask for.

Blessed are you when by all these things you assure us
that the thing that make us individuals is not in our peculiar muscles,
not in our wounded nervous system, not in our difficulties in learning
 but in the God-given self which no infirmity can confine.

1 comment:

  1. Of course, I thought of your Laynee when I read this.

    Touched my soul from top to bottom:


    I'm so glad you welcomed Jalayne, and that you love her so much - you always, always saw her as precious.

    God bless you and your family. Thank you for opening your hearts and your home.

    Cathy in Missouri