Chromosomes, Cancer & Kids

A Mother's Love

We're closing in on the 7^th anniversary of a horrible car accident.  Nancy and the six youngest kids were traveling to Michigan to introduce two week old Sadie to her family.  Half way there, they rolled off I-80.

Anyone who has been in, or had someone close in a serious wreak knows how devastating it can be and how the effects can last for years.  This one was no different.  But for all the negatives, there were miracles and positive lessons as well. 

Jonathan and I arrived at the hospital in Kearney, Nebraska about 9:30 the evening of the accident.  Alyshia, Natalie, Aaron and Ben had been treated in the ER and were ready to be released.  Joshua had suffered a severe concussion and needed to be admitted. 

Nancy was trying to take care of everyone, but it was obvious to me that she needed more medical attention than she had allowed.  She ended up being admitted for a closed-head trauma and several cracked vertebrae in her neck.

I got the kids to a hotel and the older ones stayed to take care of the younger ones.  I stayed with Josh in his hospital room and shuttled back and forth between his room and Nancy's two floors up.  Nancy's sister and her family arrived the next day to help.

Little Sadie was unscathed by the accident. She was secure in her car seat and Alyshia, who was sitting next to her, covered Sadie with her body as the Suburban rolled. 

But Sadie wouldn't stop crying.  No one back at the hotel could console her.

Nancy was concerned and told her nurse that she was worried something was wrong with Sadie.  The nurse said, "She just needs her mother".  Nancy replied, "You don't understand.  We just adopted her two weeks ago."  The nurse again said, "She needs her mother.  Have her brought over."

We did just that and what do you know, Sadie settled right down and slept for the first time in two days.

A mother's love.

In the meantime, Josh wasn't doing well.  He had actually been revived at the scene of the accident.  He wasn't very responsive.  He had very little of his usual spark and he just wasn't getting any better.  Nancy and I were very concerned. 

Nancy wasn't able to leave her bed, so I got permission to bring Josh up to her.  I struggled to get him into a wheelchair and took him up to see Nancy.  He crawled into her bed and they cuddled.  Almost immediately he began to do better.  He was able to be released the next day.

A mother's love.

There's no substitute.

I'll Fly Away

December 23rd 2001, Nancy was sitting on my lap at the family Christmas program.  My cell phone rang, I stood up and unceremoniously dumped Nancy on the floor. 

She didn't mind too much because she knew it was the call we had been waiting for: time to meet Ben coming from Korea.

We made hasty flight plans for Nancy and I to fly to Seattle on Christmas day to meet Ben the following morning.  Ben's first flight was a long one.  He had been enroute for more than 24 hours and was anxious to get the wiggles out.

A representative of the adoption agency met with us and Ben's escort and we signed the necessary paperwork.  Ben wanted to explore.  He waddled around and rode the escalators with me tagging along after him.  He was unable to run.  Nancy and I remarked at how tiny he was.  At six and a half, he was the age Sadie is now, but he weighed just half of what she does.

We shuttled back to the hotel to get our bags and to return to the airport for an afternoon flight.  Once in the hotel, Ben knocked everything off every horizontal surface in the room.  While we were packing, he went into the bathroom, stuck his head in the toilet and flushed.

This was the beginning of Ben's long fascination with American plumbing.  Ben was a flusher.  Toys, clothes, bottles - you name it.  He would sometimes come home from school with no socks.  When we asked his teacher she said he flushed them.

After the first five or six hundred dollars in plumbing bills, Nancy and I learned how to remove toilets, snake them out from the bottom, replace the $3 wax seal and remount the toilet.  That was a money saver. 

The savings didn't quite make up for the morning when he got up at 5, plugged the toilet with a shampoo bottle cap and flushed repeatedly until 6.  That one cost about $5,000 with water going from the second floor into the main floor, garage and basement. 

On the way home from the airport we thought it would be great to introduce Ben to the Happy Meal.  He loved the fries, but had no idea what to do with an American hamburger.  He finally disassembled it and tore it to pieces and then ate.

In our first few meals after Ben arrived, we couldn't figure out why Ben would try to wrap all of his food in lettuce leaves from the salad.  A short time later we went to a Korean restaurant and got a lesson in Korean dining.  All food is served in bite sized pieces and wrapped in lettuce leaves and then eaten.

Ben must have had to scrap for enough food in the orphanage because he was very protective of his food.  He would sneak food off his neighbors' plates when they weren't looking.  And it was great fun to hide is food and hear him squawk.

It would been Ben's 14th birthday on the 26th.  We celebrated it in the fashion Ben would have liked: Eating!  Those who could make it went to "our" Korean restaurant.  We reminisced about Ben and Josh and told funny stories.

Thinking back on Ben's first flight, lead me to think about his last.  His flight home.  For Ben's funeral, we asked our friends from the Genesis Group choir to sing "I'll Fly Away".  The words seem to echo what we felt Ben's thoughts would be on returning home to his Father in Heaven after his painful battle with cancer.  "Just a few more weary days and then, I'll fly away".

Here is the audio file from the funeral.  Our dear brother James sings the lead.

I'll Fly Away

 

I'll Fly Away- Albert Brumley

Some glad morning when this life is over I'll fly away To that home on God's celestial shore I'll fly away    I'll fly away oh glory    I'll fly away       When I die hallelujah by and by    I'll fly away When the shadows of this life have gone I'll fly away Like a bird from these prison walls I'll fly I'll fly away Just a few more weary days and then I'll fly away To a land where joys will never end I'll fly away

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.