Chromosomes, Cancer & Kids

Mommy! Help Me!

Ben was pretty much non-verbal.  Ben's first sentences, turned out to be his last, spoken a few hours before he died. 

When Ben had been with us about two weeks (a six-year-old with Down syndrome from a Korean orphanage),  I took him for his special needs evaluation with a school district psychologist. 

It was a pretty grueling hour or so.  The very fresh, young doc was frustrated with the difficulty he was having getting Ben through the paper work.

He tried to get Ben to point to pictures when he named them.  I explained - again - that Ben was Korean and did not speak English.

He gave Ben a pencil to write his name.  I explained - again - that Ben was Korean and did not speak, or write, English.  I asked the doc if he could read Korean, because if Ben were to write something down, one of us would need to translate it to know if it were correct.

So the doc asked him to point to the letters in his name.  I pretty much thought that had been asked and answered. 

At last, after all of the forms and tests had been attempted, we could go.  But the doc stopped us on the way out to give Ben a bookmark and explained it had 10 things that Ben could do to help his self-esteem.  Oh, brother.

Ben eventually learned our names.  He had a few words he picked up over the years, but not too many.  He did learn enough sign language to communicate his basic needs and wants.

Big sister Alyshia taught him how to say, "Spank your butt!" and he would say that whenever he was mad at someone. 

After he got leukemia, he learned "morphine" and his new battle cry, "Go away cancer!" which came out "Gagawhy canka" - shouted with his fist in the air.  But he had never strung together a sentence of his own.

So I tell you this, because Ben was never able to say he loved us.  He would sign it.  And when the love would overpower the autism, we would get some hugs.

The night before Ben died, we went out to dinner.  He started to get uncomfortable during dinner.  When we got home he was in a lot of pain.  We gave him all the morphine we could.  It wasn't enough.

Finally, he cried out, "Mommy.  Help me!  Daddy.  Help me!  Natalie!"  We were shocked, proud and panicked.  We called the hospice nurse and she came out to up the morphine.  A few hours later Ben fell asleep and later slipped into a coma, never to awake.

Recently, Nancy and I were watching an episode of ABC's Extreme Makeover Home Edition.  Featured was a family that had adopted 6 special needs children from China.  They showed several of the children expressing their love for their parents.  Their gratitude for a real life, away from the orphanage.  The chance to be loved and to be part of a family.  One said that her parents were her heroes.

Tears ran down our faces as we both realized that if Ben had the power, he would have said the same things.  Someday, he will be able to express himself and we'll hear what he has to say.  Until then, we'll treasure those few simple, last words:  "Mommy.  Help me!  Daddy.  Help me!  Natalie!" 

A Throw Away Kid

Just like in the movies, baby Ben was found on the doorstep of a church.  They guess he was about a month old.  We celebrate his birthday on October 26th - but who knows the actual date.

Ben was lucky: First, his birth mother loved him enough to leave him somewhere that would take care of him.  Hard as it is to believe, it's fairly common in Korea to simply drop your handicapped baby in the river and be done with him.  Second, he ended up in a Christian orphanage for handicapped children.  If you had to be a Korean orphan with Down syndrome - this was the best place for you.

I don't know the circumstances in which Ben came into the world - I can't judge his birth parents.  I can judge whoever left the cigarette burns and other scars of abuse on his little body during the years in the orphanage. 

Jesus said, "Whosoever has done it unto the least of these has done it unto me."  Non-verbal, profoundly retarded, physically deformed - I suppose there are those who would classify Ben as one of the "least of these".  He would never earn a living, make a contribution to science, art or literature. 

Ben's autistic behaviors made him very uncomfortable to be around at times.  As a result, there were very few people outside the family that ever got close to Ben.  Close enough to appreciate and love him.  Ben's mission on earth was very close to home.

In the 1920's, Dr. Solomon Huebner developed a formula for determining one's "Human Life Value".  Life insurers use the methodology to calculate the financial impact someone has on their family.  So the CEO's "Human Life Value" is greater than the teacher or soldier.  But life has taught most of us that that which has the most value in human life rarely has a dollar sign in front of it.

There are those that will enrich the lives of others - maybe many, maybe a few. 

There are those who will cause pain, destruction and despair. 

For some like Ben, the miracles they perform take place in the lives of those who care for them.

Our hearts grow when we love those who can be hard to love.  Our capacity is expanded when we tend to the unceasing needs of the afflicted.  Our perspective sharpens when we sacrifice for those who cannot do for themselves.

There aren't any throw away kids. 

The 2nd Time Around

I remember being afraid when Nancy was pregnant with Alyshia, our second.  I was afraid that I wouldn't love her as much as I did Jonathan.  That I couldn't love her as much.  How could I possibly divide the tremendous love I felt for Jon with another child?

Of course, I learned the moment that she was born, that love is multiplied - not divided.  In an instant I was filled again.  How can it be that love can be so complete and perfect in the blink of an eye?

And yet it is, and was again three more times.  Devotion, commitment, hopes, fears . . . all there in a heartbeat. 

Now you may think me foolish, but I had the same fear when we approached adoption.  When I first held Ben, he slapped me in the eye - repeatedly.  That was his standard greeting for a year or so.  Bringing a six-year old orphan with autism and Down syndrome - who can't speak English - into your life is a little more complex than a newborn infant.  But the love was there from the beginning. 

In the courthouse, at the adoption, I remember having one very strong impression.  It sounds a bit old fashioned, but the phrase "Ben is under my protection" kept going through my mind.  I felt that in a distinct way that I hadn't with the other children.

When Sadie came to us, we were able to bring her home the day after she was born.  When I first held her in my arms, that familiar multiplying of love filled me again.  It was in no way different than what I experienced with the birth of the first five children.  There is no way she could be anymore mine.

When it became obvious that Ben was going to die, I was again afraid.  It had been less than a year since Josh's cancer relapsed and he passed.  This time I was afraid that my grief would be multiplied.  I foolishly hoped that the pain would be divided because I didn't know how I, or any of us, could bear more. 

It didn't work out that way.  Crushing as it can be at times, I realize that the pain matches the love so I'll gladly bear it. 

Fair is fair.