Chromosomes, Cancer & Kids

I Want to Be a Dad

When Josh's cancer was in remission, he had gone up to his room to rest one evening.  I popped in to check on him.  He was laying on his side, looking at a small picture of his sweetheart on his nightstand. 

He looked very melancholy and I asked what was the matter.  He said, "I want to be a Dad."

Josh felt strongly that he would die soon, so he knew he wouldn't have the opportunity to be a dad.  And he was mourning that. 

Josh loved babies and little children.  Kids would just swarm him and they would tickle and giggle. 

He always wanted to hold babies.  Most moms were at first reluctant to had over their precious newborn to a kid with Down syndrome, but it it only took a moment to see how gentle and tender Josh was with their child and a moment more to see how their baby responded to Josh.  There was a special connection that brought tears to the eye.

Josh didn't know that men with Down syndrome are rarely able to father a child or that he would not be able to physically provide for a family.  Josh did have all of the love, patience, care and hope required to be a good father.  Qualities that many of us who are fertile and have jobs may not have in such abundance.

Josh was very keyed in on fatherhood.  I remember when he first understood the concept.  He would often say, "You're the Dad.  I'm the son."  I wish I could here him say that again - it came out very softly as "shhhun".  When he wasn't getting what he wanted from me, he would reverse things and say, "I'm the Dad you're the Son" as if that would settle the matter in his favor.

As with most teens, there were all the variations of "Dad" from the enthusiastic "Daddy!" when I came home to the exasperated "Dad" when I did something embarrassing at the store. 

So I look back at what kind of dad I am.  I'm so proud of all my kids.  I know in many ways I fall short of being the kind of dad I should be.  So in this life, I got to be a dad when Josh couldn't.  But I'll take to heart what a privilege it is to be a Dad and try to, once again, be more like Josh.

Charles Dickens or Monty Python?

I'm tempted to characterize going through the Holidays after the death of a child with Dickens' opening lines in a Tale of Two Cities, "It was the best of times.  It was the worst of times."

I love feeling the Christmas spirit.  I love how everyone seems to smile easier.  I really love hearing Nancy laugh.  It's fun to watch Jon, Alyshia and Natalie get their little families ready for Christmas.  Aaron and Sadie are very much into the season.  The Best of times.

Then come the memories when you hang the stockings of two who will never again sit around the Christmas tree.  All  those tree ornaments that they made in school. 

The joys of Christmas create strong memories that last the years.  Who among us can't be teleported back to a particular Christmas, triggered by a smell, song or sight?

This weekend, Nancy, Sadie and I caught a matinee at the theater in the mall.  We laughed so hard and were having such a good time.  We stopped at Red Robin for lunch.  After we ordered I was looking around. 

All of a sudden, I was transported to a week before Josh died when he, Aaron and I went to a movie and then lunch at Red Robin.  We knew Josh was going to die and we were getting in as much time together as possible and make some memories.

On the wall was a poster for Blues Brothers 2000.  That was one of Josh's favorite movies (I would always skip past the dancing girls, thank you for being concerned).  He loved the music and we would listen to the soundtrack CD over and over.

I was suddenly overcome.  I just put my face in my hands and sobbed.  I'm not sure that's ever happened in public before.  Sadie climbed under the table and loved me.  The Worst of times.

About a year ago, I received an e-mail from a fellow who had lost a child several years before.  He said, "Don't let the loss define you."  As I've thought about what that meant for me, I've broken it down:

There's no questioning that having a child die is a defining moment. It's every bit as monumental as having the child in the first place.  I can't recall ever talking to a parent that didn't consider bringing a child into their family as defining.  Plumbing the depths of your love and commitment, defining what kind of man or woman you want to be, defining the kind sacrifice you're willing to make.  Every mature parent is fundamentally changed.

Burying a child forever changes you - deeply and profoundly.  Those questions a new parent struggles to answer about his or herself need to be asked again:  What kind of man do I want to be?  Am I willing to love freely again?  Will I engage life again?

What must not define you is your grief.  And believe me, that's easier said than done.  I read that when a parent loses a child, they lose so much of themselves (and their future) that they need to reinvent their lives.  It's a kind of a "do over".  If you're stuck in your grief, this will never happen.

For me at least, you can't really being the rebuilding until you've been down the road far enough to glimpse the possibility of a life (new or otherwise).  The literature says that for many, that point comes after about two years.  I can see that for me and my family.  I can see getting better.

It's been nearly three years since Josh died and almost two since Ben died.  That is a long time.  Yet it feels like it was a few months ago. 

I recently talked with a woman who lost two sons over 20 years ago.  I watched as she traveled back across those years in an instant.  She said that the pain is always as acute - it just comes less frequently and lingers for less time as the years go by.  I can see that too.

So maybe I want to describe my feelings this Christmas in the terms of Monty Python and the Holy Grail - "I'm getting better!"

Jiffy Pop and BB Guns

About 5 months before Josh died we went camping at Bear Lake.  We packed up the trailer and headed up to the Huntsman Cancer Institute for a radiation treatment and then on to the Lake.

When I was shopping for the trip, I picked up some traditional treats: stuff for smores and chili and Spaghettios.  When I was a kid we always had chili and Spaghettios mixed on campouts (I think it was probably born of not enough of either one day, so Mom combined them). 

Then I saw some Jiffy Pop popcorn.  I didn't even know they still made it, so I bought a couple packages to make at camp, just like when I was a kid.  I thought that Josh and Sadie especially would get a kick out of watching it pop.

We had a blast on that trip.  We rented a speed boat, swam in the lake, rented recumbent trikes for the kids and made smores around the campfire.  I think we also had pizza three times - at Josh's insistence - and the famous Bear Lake milkshakes.  What we didn't do, was make the Jiffy Pop.  I frankly just forgot.

Nancy, Sadie and I were going to watch a DVD Friday night and wanted some popcorn.  I rummaged through the pantry, couldn't find any microwave popcorn, but did find the Jiffy Pop buried in the back.  The hopes I had for those packages of Jiffy Pop flooded back.  More than a twinge of regret that I didn't get to share Jiffy Pop with Josh.

I have another regret.  During the next few months before Josh died, he liked to come to work with me sometimes.  He would bring his "work clothes" on a hanger (khakis and a dress shirt) and change in the bathroom.  He would read or draw.  Sometimes he would go into the conference room and watch TV.  He made a channel list - called Josh - of his favorite channels.  Sometimes I go in there just to see his name up on the TV screen.

One of the things we would do together is go into the studio and shoot my BB gun.  (Hey, the other guys throw a football or play darts - I have a BB gun).  It was fun for me, but Josh really liked it.  He would ask to shoot almost every time he came to work.

Sadly, there were too many times when I would say, "Not today.  How about next time."  Josh was a good sport about it.  The problem is that we ran out of "next times".

Aaron got a part in Thornton Wilder's play Our Town.  We rented the video and watched it last night.  In the cemetery seen, those who had died commented several times how those who were living just couldn't see.  How they didn't look at each other and see because of the distractions of everyday life.

One said, "They walk around in a fog and trample the feelings of those around them."  I admit that I struggle to break away from busyness to engage what's real and important.  Sometimes, it just easier to be numbed from grief and the pressures of life and just skim along.

That's no way to live.  I keep our target from mine and Josh's last BB shoot on the wall of my office to remind me.

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.

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

Mustard Days

We spent several days last week as house guests of some dear friends and their 11 children.  Actually they have 13 children - but the oldest 2 don't live at home. 

Theirs is a fascinating story, and it's theirs to tell, but I will say that we particularly enjoyed our time with their son and daughter with Down syndrome.

We smiled till our faces hurt and cried our eyes out.  It was so sweet to be so close once again to "Downsies": their native joy and enthusiasm, that intractable stubbornness and the endless love. 

And a poignant reminder of what is missing from our lives now.

As you can imagine, a family of that size which includes children with special needs, requires everyone to pitch in.  I was reminded of the tender care our children offered Josh and Ben. 

My thoughts turn especially to Josh and Aaron's relationship.  Of course, each of the children had a remarkable relationship with their brothers, but I see Aaron every day and think of how the boys' deaths affect him.

Aaron was born just 18 months after Josh.  I feel strongly that Aaron promised to join Josh as soon as he could to be his companion and protector. 

It wasn't too long before Aaron caught up with Josh's developmental age and it was like having twins in the house.  Most parents of twins can attest that when they're toddlers, you might as well divide their IQ in half when they're together, such is the trouble they can create. 

One morning we woke up to two boys covered in eggs.  They had been throwing them down the basement stairs and around the kitchen.  This was when we were buying eggs in 60 count cartons from Costco.

Big mess.  Aaron said it was Josh's fault and Josh said it was Aaron's.  Another morning the entire refrigerator was emptied out - including the shelves.  Sauerkraut and pickles all over the place, a gallon of milk - everything.

Another day all the condiments went missing.  No one knew where they were.  Finally we noticed a trail of mustard leading to a strong odor coming from a hutch in the dinning room.  There was a bowl containing all of the ketchup, mayo, Worcestershire and mustard in the house. 

We dubbed these the Mustard Days.

Josh was very speech delayed.  Aaron developed a grunt language that they used to communicate.  Josh would grunt and Aaron would interpret for us.  Once I came upon them in the hallway.  Aaron was reading Josh a book in grunt-speak.  They also used their language to get their stories straight from time to time.

Aaron had outside interests and friends, but whenever Josh wanted to join him he was welcome.  If someone suggested that Josh not be allowed to play with them, Aaron always chose Josh and left. 

Aaron was always proud of Josh's achievements.  I know it's hard for any kid with a sibling with special needs.  There is much sacrifice of attention and resources.  But any private resentments that Aaron or the other kids had were never expressed.

I can't describe the level of medical care Aaron provided to both Josh and Ben.  He learned how to program IV infusion pumps, keep a med schedule and provided much needed relief for parents.  All the time, doing everything he could to cheer and support his brothers through their cancer treatments.

As much as I hope I am a good Dad, I know that Josh's life would have been greatly diminished without his brother Aaron. 

At Josh's viewing, Aaron never left the head of the casket.  He remained the Lion at the Gate through the last hour. 

Now, I know that Josh is taking his turn watching over Aaron in ways he wasn't able to do when he was alive.

Here's to brothers and Mustard Days.

Can You Lose the Battle and Still Win the War

"The worst is behind you." "It's been long enough - you should be better now." "Your burden has been lifted." 

What a load of crap! 

Do I want to sound bitter and cantankerous? No.  Do I want your attention? Yes.

Two of my sons lost their battle with cancer and died.  It's been a while.  It's not all better.  And why should it be?  We rightly describe the cancer experience as a "heroic battle".  Win or lose, it's a battle. 

When our Soldiers come home from war, when the treaty's signed and the Salior kisses the girl in Times Square, is it over?  Is it all better?

Win or lose, those in military service come home with wounds.  Some have a long road to physical recovery - some never will.  Some have seen and done things that forever challenges how they interact with society.  Relationships with spouses have been put on hold and require intense mending.

Children have had to grow up too much without a father or mother present.  Too much time has passed when attention was more urgently required elsewhere.  Yes, the Soldier, Sailor, Airman and Marine come home to a lot of work, rebuilding shattered lives.  When the Battle is over, the War is far from won.

So many people we know assume that putting our children in the ground was the worst thing that happened.   A period of grieving and all will be well. 

Actually, when the shock wears off and you look at what has become of your life while you were in the thick of battle, you realize that the worst may not be over.

There are things in our family life that will take much longer to fix than it took to break them.  Looking at other families that are in the same club, we're not alone in the struggle. 

When you meet someone who has lost a loved one, please realize that the death was not the end of the war.  The battles that continue to be waged will likely be less public, but are no less vigorous. 

Maybe we are not fighting for our lives - but we are definitely in the fight of our life.

Death Panels & Toxic Pee

Since I've been through end-of-life counseling twice I feel like I can speak up. 

Allow me to avoid the politics and controversy and cut right to what it's like where end-of-life discussions are "between a patient and his doctor". 

Where life and death and quality of life decisions are made.  Where fortunes and sanity are on the line.  Where heartstrings are wrenched.

During Josh's first chemo treatment, he was still recovering from bone surgery in his right thigh.  He couldn't put any weight on his leg so he had to sit on the edge of the bed and use a urinal.  I helped with that. 

He wasn't a very good shot. 

After two days I started getting sores on the back of my hands.  I mentioned this to a nurse.  She asked if I were wearing gloves when I helped Josh pee.  I said no.  Said said that the chemo drugs are like a powerful solvent and that I needed to protect my skin from his urine.

That's the stuff they put into our kids' bodies.

Nothing was going right with Ben's leukemia treatments.  He should have been in remission after 5 days.  It took 3 weeks.  The side effects and complications of the chemotherapy started almost immediately.  The doctors quickly decided to reduced his chemo doses to 75%.  A couple months later, they were reduced to 50%.  Meds to counter the pain, infections, nausea and other symptoms continued to mount.

Three months into treatment we were exhausted from being in the hospital and asked to be trained to treat Ben at home.  Managing this was a daunting task.  I organized Ben's weekly regimen on a spreadsheet.  When I gave it to an oncologist to verify it, he was physically startled at all of the meds.  The chart below is for one week in August 2007.

This was actually an easy week.  When Ben had intense infections, he would sometimes be on two different IV antibiotics and IV nutrition that had to be administered on screwy schedules around the clock.  The whole family moved around like zombies.

This is a picture of what the chemo did to Ben's mouth.  Chemotherapy drugs are designed to kill fast growing cells like cancer. 

They also kill other fast growing cells like the lining of the mouth, esophagus, stomach, intestines and, of course, hair follicles.  This is at a 50% dose.

That's when the six oncologists had a meeting.  They were divided 3 and 3.  One group wanted to intensify Ben's chemo.  The other wanted to stop chemo and focus on pain management. 

It was interesting that the 3 who wanted to go full steam ahead were the younger group.  Their hearts were in the right place.  For 2 of them, I think they couldn't bear to fail our family.  They helped us through Josh's situation just a year before and intensely didn't want us to loose another son.

The sentiment of the three older physicians was expressed best by one who said, "We've done enough to this boy.  We need to leave him be." 

Nancy and I thought and felt that they were right and we ended chemo therapy.  We knew that Ben would relapse and that he couldn't tolerate treatment any better at relapse than he was at that time. 

We knew that Ben would die.

Mercifully, Ben died a peaceful death from complications of the chemo rather than relapse.  (see The Most Tender Mercy)

These were awful decisions to make.  They were made with God, family and our friends - the oncology team that loved and cared for Josh and Ben and the rest of our family.  I can't imagine having the government involved in that sacred trust.
 

Make Mine Hot Rod Red

I think that sometimes people don't realize how much kids with special needs are just like everyone else. 

Josh had Down syndrome.  And Josh had dreams and aspirations.  He had friends.  He loved being a big brother.  He liked cool shoes and was a real clothes horse.

I was reminded of one of his favorite things this weekend.  Nancy and I went to get a new cell phone for Aaron.  Every time we passed a cell phone display, Josh was there checking them out. 

Once we had just ordered lunch at Red Robin at the mall when Josh took off on one of his walkabouts.  I won't go into the utter panic of the next hour and a half, but the first places we looked for him were the shoe stores, the tux shop and the cell phone stores.  They all remembered seeing him.  We finally found him in Sears shooting baskets.

Because of his frequent unauthorized adventures, we decided to get Josh a cell phone.  We figured we could call him and find out where he was.  Nancy, Aaron and Natalie got him a hot rod red cell phone.  On the way home from school, Aaron slipped it into his pocket.  They called him and watched his delight as he looked for the source of the ringing and discovered is very own cell phone.

As you can imagine, the phone rarely left his side.  We programmed family members' numbers into the phone and he called us frequently.  I loved getting his calls at work.  I almost always got one just before it was time to come home.  It would go something like, "Hey, Daddy.  Come home.  Bring food. Ba-bye". 

It was fun to listen to him calling around to his older siblings trying to get them to bring him something to eat.  A couple months before he died, we were all at Otavios celebrating Jon and Alyshia's  birthdays when Josh got a call.  He wandered around the restaurant for about 20 minutes talking on the phone.  He never would tell us who called.

After he relapsed, he went into a deep sleep.  The hospice nurse said that he was in a coma and wouldn't wake up.  After about 7 hours, Aaron rested Josh's phone on his chest, went into the other room and dialed his number.  The phone rung and Josh sat up and answered it.

That was Wednesday morning.  Josh would sleep for most of the time, occasionally waking for hugs and kisses.  He passed at 1:50 Saturday morning.

Natalie still uses Josh's cell phone and probably will until it will ring no more.

I've attached this file with one of Josh's voice messages to his mom. 

Download 01 Joshua's Phone Call

Now that red cell phone matched Josh's electric guitar.  Here's a file with a song Josh recorded for Aaron. 

It's hard to make out the words, but he sings about no more pain and no more crying.

Download Josh's Song