Chromosomes, Cancer & Kids

It's Time to Go Home

The first time Josh told me he was going to die was 4 or 5 months before he was diagnosed with cancer. 

Josh and I had just gotten in the car and were pulling away from the house.  He said something that I couldn't quite understand so I asked him to repeat it.

He pointed at the clock in the car and said, "It's time to go home."  I said, "We just left.  We'll go home after we go to the store."  Josh replied, "No," and pointed to the sky, "time to go to my Dad in Heaven."

That rattled me.  I tried to ask a few more questions, but Josh was done talking.  Josh, like many others with Down syndrome, would have these piercing moments of clarity.  He could articulate bedrock truth and deeply spiritual insights.  And then the window would close and things would go back to normal.

As Nancy and I talked about this, we couldn't shake the feeling that Josh knew exactly what he was talking about.  Then a diagnosis of myleod sarcoma a few months later made it all seem so terribly possible. 

Then came months of surgeries, chemo and radiation therapies.  We had moved his bed downstairs in the dining room because he was too weak to get up the stairs.  Aaron had his bed in there as well so that he could watch over Josh at night.  Josh was 14.

One day Aaron came into the dinning room and found Josh doing some decorating.  Josh loved caps and had dozens of caps for his favorite football and baseball teams.  He had lined them all up.  He told Aaron that he could have his hats when he died.  Aaron told him that wouldn't be for a long time, but Josh corrected him and said it would be when he was 15.  Of course, that turned out to be true.

A few months later, when Josh was stronger, he moved back upstairs with Aaron.  I went into his room to check in.  He was upset and I asked him what was wrong.  He told me that "Dad in Heaven is mad.  He wants me to come home and I don't want to go."

We talked a little.  I came to feel that Josh understood his time was short.  I'm certain that he was communicating with his Heavenly Father and they were talking about him coming home.  Josh knew he would go, but asked for some more time.  I didn't sense any fear, just that he wasn't quite ready to leave us.

We do know that he was looking forward to Heaven.  He told Nancy that God had a blue house with a bowling alley - hard to compete with that.

Not many weeks later, the time came.  Josh's final words were "Go Home Now." 

I am so grateful that Joshua had such a clear understanding of where he was going: Home. 

It gives us so much comfort to know that he knew.  That he was being received with tremendous Love.  That he was going to a place of Peace.  I hope that one day I will know all that as well for myself as Josh did.

The Holidays: After the Death of a Child

This time last year, I wrote these thoughts on what Christmas would be like without Josh and Ben.  It'is a huge question for the newly bereaved.  Anticipation is bad - the reality is just as bad.  But there is still joy to be found.  Here it is:

 

Christmas this year is going to be kinda weird.  Again.  Christmas 2004 was normal.  Our seven children were living at home and gathered round the tree.  All holly berries, sugar plums and Ho Ho Ho.    

 

November of ’05 we were told that Josh, who was then 14, had cancer.  A few days before Christmas, an out of state pathologist finally was able to confirm a diagnosis of his rare cancer.  Christmas was spent in the hospital for his first round of chemotherapy.  The presents and such were postponed for a few days until Josh got home.

 

December 18^th ’06, after 5 rounds of chemo, radiation and months in the hospital, we were told that Josh was clinically in remission.  Christmas that year was at home, a lot sweeter.  We were all still shell shocked, but were feeling a lot better. 

 

January 18^th ’07 we took Josh in to the pediatrician for a sinus infection and learned that he had relapsed.  He died February 3^rd. 

 

Eight weeks later, Benjamin, age 11, was diagnosed with leukemia.  Ben came to us as at 6 six years old from a Korean orphanage.  He arrived in frail health (and Down syndrome and autism).  He simply couldn’t tolerate the chemotherapy and we had to suspend treatment after four months because it was killing him. 

 

Christmas ’07 found us missing Josh.  He also had Down syndrome and had been the center of our family’s world since the day he was born.  Simply crushing.  Little Ben had been so ravaged by the chemo that he was on ridiculously high doses of morphine.  Frankly, if it weren’t for the home movies and pictures, I’m not sure I would remember much of that Christmas.

 

In January ‘08, Ben started having seizures.  The MRI showed that the chemo they had injected into his spinal cord had killed a bunch of white matter in his brain.  His body started shutting down.  He died January 25^th.

 

Christmas this year?  Well, the good news is that we’re finally able to have a few laughs now and then.  Joy has returned – at least sporadically.  But Christmas Present and Christmas Future will always find Tiny Tim’s crutch against our fireplace. 

 

This year as I wander the stores and malls, I look at the other Christmas shoppers.  What’s their story?  What’s going on in their lives?  What needs do they have?  What needs in others are they filling?

 

We’ve certainly been blessed with caring family and friends.  One of those Christmases a whole load of presents showed up from our neighbors.  Another Christmas, the owners and employees of the convenience store where my wife gets her daily Diet Coke showered us gifts.  I was embarrassed at one level because we didn’t have a material need and it all seemed to be too much.  But I am so grateful because it helped fill our need for love and support.  And I know these expressions were a blessing to the givers.

 

We moved a couple weeks after Ben was diagnosed.  Our new neighborhood organized and brought us meals three days a week for six months.  I didn’t even know their names.  My wife’s sisters spent all their vacation time (and money) coming out to help.  Josh’s junior high choir held a fund raiser for him and sang at his funeral.  The list of kindnesses goes on and on.

 

I suppose I was most taken back by the response of the Aftermarket.  I was new in the industry.  Folks learned of our circumstance because I was taking calls and working from the hospital (I lived there 9 months out of 24).  I received thoughtful notes, calls and e-mails.  People I had never met asked for the names of my family members so they could pray for them individually.  I can’t tell you how buoyed up I felt on arriving at the funeral home for the viewings when I saw the flowers from individuals and companies with whom I associate professionally. 

 

Christmas this year?  Well, I guess we have to start making a new “normal”.  Be happy in spite of the painful hole in our hearts.  Be grateful for all we receive.  Be mindful that much of God’s work is done with our hands and look for His children that are in need.

 

Merry Christmas, and a Happy New Year.

What would Josh do?

There they were, 5 very tough looking guys, pants almost falling off, long hair, knit caps - the kind of guys dads keep their eye on.  They were playing video games in the entry at Wal-Mart. 

Nancy and I bumped into some old friends on the way out and stopped to chat. 

Steve and I were keeping watch when Josh just walked up to the guys and said, "Hi, I'm Josh.  What's your name?"  We took a step towards the group, but could sense that there wouldn't be any trouble.

As we visited, we saw the young men start to warm up to Josh.  Pretty soon they were feeding him quarters and cheering him on as he played videos games with them.  Then they moved on to the Crane where you try to grab a stuffed animal.

When it was time to go, they told Josh goodbye.  We were in the parking lot, almost to the car when we heard someone shout "Josh!"  I saw the guys running full tilt towards us.  I thought, "OK, here it goes."  But I was wrong.  One of them had won a stuffed animal on the Crane and they wanted to give it to Josh.

Now, I'm trying to be like Jesus.  I admit to falling far short almost all of the time.  When I saw those guys, I wanted to give them a wide berth and hoped to have no interaction.  I was looking at them through my eyes. 

Josh saw them quite differently.  I couldn't help but think of when Jesus was criticized for mingling with "publicans and sinners". 

What difference did those few minutes with Josh make in the lives of those young men?  What did it feel like for them to selflessly give?  How did they feel as their evening went on?  How long did the feeling last?  Do they still think of it now, as I do, five years later?

Josh was always very attuned to people's feelings.  He could sense hurt, sadness, fear - and he would unhesitantly approach and ask how you were.  And then you would get one of those patented hugs that made everything all better.

Looking back, I feel like I had a "cheat" for 15 years.  Anytime I felt down or troubled in any way, I would get a cuddle from Josh.  Woes just melted away, replaced by warmth and peace. 

It was so easy and so good.  Where can I find that peace?

Of course, we know where we can turn for peace and solace.  It comes from the same source as Josh and is given just as freely. 

Why is that so hard for me to remember?