A Tale of Three: part 3

August 4th, 2011

“Love, it is said, is blind, but love is not blind. It is an extra eye, which shows us what is most worthy of regard. To see the best is to see most clearly, and it is the lover’s privilege.”  ~James M. Barrie, and jotted on a piece of scrap paper that traveled with me everywhere I went for years as a young woman

Dear Verity,

A few weeks ago, I told part of your story to a friend, a part that only a handful of people know.

It’s a story about shock, pain, fear, and love.  But mostly about love.

I want to tell it to you now, even though you won’t understand it for a long time, because this week marks one whole year since it happened.  It has taken me that long to get the courage to write about it here.  And believe me, this will take some courage.

Do you know, back before you were born, I sometimes heard people say that having a special baby changed them for the better.

I did not know what they meant.  They spoke a language I didn’t understand.

Many years ago in our country, when a baby with Down syndrome was born, the doctor would tell the Daddy and Mommy that their baby would never learn anything.  He said their baby wasn’t as good as other babies, and that they should not take their baby home.  If the Daddy and Mommy listened to the doctor, they would leave their tiny, sweet baby in the hospital, and the baby would go to a big building to live with lots of other children.

Back then, people didn’t know very much about Down syndrome.  They didn’t know how to help children with Down syndrome grow strong and learn.

And anyway, God designed children to grow and learn best at home with their families.

So the babies who went to live in those big buildings didn’t grow healthy or learn very well.  Then the grownups said, “Look, we were right!  Those babies aren’t learning!  They aren’t as good as other babies!”

For a long, long time, most everyone thought that children with Down syndrome couldn’t learn.  There are still parents in our country who believe this.  They don’t study the ways to help their child with Down syndrome, or make sure they get the therapy they need.  It is very sad, but some of them even keep their children hidden away, because they are ashamed of them.

A year ago, we were so starry-eyed and full of hope about your future, and about how much difference it would make that you would be getting therapy and lots of other help.  We saw so much potential in your tiny body and mind!  We hadn’t met many others with Down syndrome yet, but I had seen enough and read enough that I was convinced that with all the intervention you would get, you would beat all the odds and be a T21 superstar.  Dreaming about the future can be really neat, because before you actually get there, it’s fun to imagine all the best possibilities.

A year ago, you were beginning to heal from your heart surgery.  You lay in a big hospital bed, and had your own nurse who stayed close by to care for you.  Daddy and I had been visiting with you, and now it was time for us to go and eat our lunch.  We had received some wonderful news about how you were healing, so as I ate my lunch in the family waiting area, I began writing to let everyone else know, so they could praise God with us!

I had only gotten a few words typed when around the corner toward us came a sight that made my heart plummet from its former height and freeze in utter shock.  I sat frozen as an Amish mother came past us pulling her teenaged daughter in a hospital wagon.

This child appeared to have a generous measure of every stereotypical Down syndrome characteristic.  She sat slouched over with her head hanging down off her shoulders, her mouth gaping open and her tongue thrust far out and constantly working.  Her eyes were dull.  She wore a shapeless Amish dress over her unshapely body.  Her head was nearly bald, with just a few sparse hairs.  When her mom spoke to her, she did respond, but only with grunts and moans.  An overpowering smell of various offensive bodily odors hung in the air about mother and daughter.

Panic, absolute paralyzing terror, was clutching at my heart.  I sat, horror-stricken, until they had both disappeared into the laundry room behind us.  Then I slapped the laptop closed, jumped up and began walking.  My thoughts were a confused swirl; I had to get out of there and think and breathe.

For the rest of that day, little Verity, and after we had gone back to the Ronald McDonald House for the night, your daddy and I talked and talked.  All I had was questions with no answers, but I asked them, anyway.

I’m sure that mother loved her child, so how did she come to be in that state?

Why didn’t she make some effort to give her some human decency?  Cover her head with a kerchief or something?

Was she there for cancer treatments?

Is it possible that she had received therapy when she was younger?

And her tongue?  Had they tried to teach her to keep it in, and she couldn’t learn?

Is it possible that therapy would not work?

For how many years has it been tested?

Aren’t we still in the experimental stage?  Are all the facts in yet?

Would some children do well regardless, and some do poorly regardless?

Are we fooling ourselves?

What if we put in years and years of hard work, and later find out that it was all for naught?

But when all the questions had slowed to a trickle, I realized that I was still faced with the only one I needed to answer right then.

Could I handle that?

Could I handle it?

Could I??

And I knew the answer.

That girl lacked nothing in the sight of God.

But my heart did.

My heart had automatically recoiled from this innocent human being, who had no beauty that I should desire her.  I automatically viewed her based on her outward appearance and her level of functioning–the very measuring stick I despised.  Instead of reaching out toward her and her mother in love and caring, I thought only of my fears that sweet little you might someday be like her.

“There is no fear in love; but perfect love casts out fear: because fear involves torment.  He that fears has not been made perfect in love.”

Verity, without saying one word, that young girl was used by God to show your mama something ugly she did not know was in her own heart.

There was no big miracle that day; God did not zap me and fill my heart to overflowing with His love.  He just showed me where my love was conditional.  I repented in shame, and asked Him to make it unconditional.

That day, sweet Verity, I determined to learn to love unconditionally.  Deciding to love is not the same thing as love, but it is the first step toward love.  It was just the next step on the path God had for me.

I no longer fear the pitying or concerned or awkward glances you receive from others.  I no longer fear the loss of approval as they realize that our youngest of ten children has special needs.  I no longer fear that you may not turn out to be a T21 superstar after all.  I no longer fear that others may someday see you, my own Verity, as I saw that young woman in the wagon one year ago.  

And on that day I never would have guessed that this path would lead to an orphanage on the other side of the world.*

In this orphanage are many, many children…

…whose heads are shaved…

…who wear such shapeless and unspecific garments on their tiny, unshapely bodies that it is often impossible to tell from the outside if they are male or female…

…who sit, if they know how to sit, slouched over with their heads hanging down from their shoulders…

…whose mouths gape open and whose poor little tongues are thrust out…

…who have dull eyes during the many hours that they must lie alone, without stimulation of any kind…

…who do not utter any sounds other than occasional grunts and moans, as they learned quickly that it is useless to call for help…

…and who are surrounded by the aura caused by many, many rooms full of children whose diapers are only changed once or twice a day.

These children who are of inestimable value in the eyes of God.

These children my heart yearns over and hurts with.

These children we pray we will be allowed to help.

These children whom I love more than any pearl of great price.

“But whoever has this world’s goods, and sees his brother in need, and shuts up his heart from him, how does the love of God abide in him?  My little children, let us not love in word or in tongue, but in deed and in truth.”

Now I understand, Verity, how God can use one special child to change lives.

 

 

 

*Over the past twenty-four hours, we have received a large amount of new information about Katie’s orphanage.  I hope to write more about this soon.


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10 Responses to “A Tale of Three: part 3”

  1. Suvilla says:

    Oh Lord, do that same work in my own heart!

    Blessings to all of you…. 

  2. Tammi says:

    Oh, Susanna, how I love your heart!
    Every single day I am so thankful you are going to be Katerina’s mamma!
    Thank you for sharing your heart lessons.  They are a precious gift. 
     

  3. I could listen to your stories for hours and hours…. 

  4. Becky K. says:

    What an excellent series of posts.  Isn’t it amazing how God has molded and shaped your heart through this process.  And now He is teaching us, your readers, through you.
    Praise Him!

  5. Deanna Rabe says:

    You have opened up a whole new world for us, Susanna.
    May God continue to teach us all these difficult lessons….

  6. Angiedawn says:

    What Stephanie said and *tears*.

  7. Kimberly Zimmerman says:

    Speechless!!  Can I just say “THANK YOU” for about the 15th time for sharing your heart stories and God lessons in such a personal and well written way.  Always such a blessing and inspiration to me.  Causing us, your readers to examine our own hearts and listen closely to the life lessons that God is showing us in our own lives!!  THANK YOU, THANK YOU!!  God is using you in a powerful way Susanna Musser!!!

  8. Beautifully written! :o)
    (((HUGS)))

  9. Kendra says:

    Thank you, just wow…so much truth here.

  10. Katherine Lauer says:

    I just found your blog and am catching up. It’s so wonderful. I have had it on my heart to adopt a child with DS for the last four years (and am waiting for God to put it on DH’s heart). I had a very similar experience as this when we met our new neighbors and one of their children with DS. The daughter was about 18 at the time and was extremely low functioning. I was faced with all that ugliness in my own heart, just as you were, and I was horrified. I realized that I had wanted to adopt a “superstar” child with DS, and that I could never proceed forward if that was the standard I set. God continues to work on my heart and I hope someday he gives me the opportunity to adopt–if *I* become worthy, not the child!

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