ForeverMissed
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His Life

Traveling

October 3, 2010

     Josh had his first airplane trip when he was only two years old.  He and I went to visit my Great Aunt Betty in San Diego.  We went to the beach and had some multi-cultural experiences hanging out with my Muslim cousin in between visiting with my aunt and her very well-to-do friends.  Josh drank out of his first crystal glass at one of my aunt's friends fancy dinner party and scared me to death when he bit a one-inch triangle out of the lip of the glass.  I fished the sharp piece out of his mouth and knew then that he would keep Guardian Angels very busy for the next 30 years!!!

     Since that first trip I couldn't begin to name every other trip we took together.  We have hiked the Tetons in Wyoming eating berries off branches that bears had just visited. Jimmy was in a backpack on my back for that trip!! We've been to Florida and to Hilton Head with our extended family.  Josh loved being in a big house with his Grandparents and aunts and uncles, brother and cousins.  He'd be the first one in the pool and the last one out!! Dunking everyone he could- thanks to the dunking lessons he got from Nate and Jimmy in Johnstown!

     Josh's first experience in a kayak was on a trip to Maine.  We had a double kayak and I found out it wasn't all that hard to paddle by myself while Josh and I rode together.  He of course had no interest in paddling!! That was just the beginning of our many many hours spent in double kayaks!

     About 10 years ago Josh began having more and more trouble with his balance and falls became much more frequent. One dreary long February when I realized we were at the Emergency Room for the fifth time that month I began exploring the possibilities of getting out of Ohio for some portion of the winter.  Not being able to get exercise outside in the winter(where falls are much safer in the grass!) was taking it's toll on Josh's health.  And so we began a new chapter of winter travel that proved to be quite the adventure for us.  It most likely extended Josh's life as well.

     We went to Kauai and found out all that there was to do and how affordable it would be to be there for an extended time in the winter.  The weather is perfect there in the winter-and there is plenty to do that doesn't cost a cent!  Josh was quite happy throwing and chasing his football on the huge relatively empty beaches.  There is so much coral on many of the beaches and Josh loved sitting for hours trying to throw every piece of that coral back into the ocean! Josh even hiked up a mountain with us to see an ancient Hawaiian site. The sun and waves and calming sound of the ocean were good for both of us.

     Next we tried Key West which one of the only places that is almost always nice all winter.  It was our first long term stay over the winter.  A month before Christmas, home for Christmas and back to Key West for another month.  We drove down with my trailer packed full of a big double bike, massage table and lots of drums.  I had made arrangements to work at a nursery that sold Christmas trees- which happened to be a workshop for people with disabilities.  So Josh had activities with some new friends while I watered plants and sold trees.  I traded massages for things like the use of a double kayak.  That winter I kept track of our kayaking time and Josh and I spent around 25 hours kayaking on the ocean together.  I bought bags of river rocks that I would mound up by Josh's feet so he could throw rocks while I paddled.  It was beautiful and we both loved it! Once Josh even jumped in the ocean with us 8 miles out on a snorkeling trip- it was very choppy and he was so brave!! 

    My lifelong friend from elementary school lives in Key West and she helped us figure out the place.  We had many friends from Columbus come down and stay with us for a week here or there and it was so much fun. We also made many new friends that year in Key West.  Almost daily we spent time with a circus family from England.  They had 5 kids from 13 to 23 and stories about their world travels that would blow your mind!! They performed every night at Mallory Square to earn their living and we'd hang out and swim and play basketball or music during the day together.  Josh loved the young guys and shot hoops and threw football with them every day.

    We also had weekly drum circles at the nursery with the new friends from the workshop.  I had plenty of drums to share and it was the highlight of the week for Josh and many of the other disabled adults.  Boy did they love drumming!! The only downside was that they were all very sad when we had to go back home.  Some friends cried and others were very mad that we were leaving.

    Josh developed some very strong attachments while we were in Key West.  There was only one big public park there where we went every day to play basketball and football. There are lots of homeless people in Key West and the park was one of the places they hung out.  Josh became great buddies with a couple of homeless guys.  They loved playing sports with Josh and it didn't take long before we'd pull up in the Jeep and hear someone yell, "HEY JOSH!! LET's SHOOT SOME HOOPS!" Josh could go for hours and hours running and sweating and acting like he was a professional athlete at training camp.  The guys would want to sit down and rest and Josh would be tossing the ball saying "KICK?"  Sometimes after being there all day it would be dark and I knew if I was starving so was Josh.  I'd try to get him to head to the Jeep and he would refuse.  I think he'd have preferred sleeping there in the park with his new buddies.  More than once I'd have to get the wheelchair and strap him in to get him to the Jeep!!

   I'll never forget one of the homeless guys Josh was particularly fond of- He had the same birthday as Josh and we were there that year on Josh's birthday.  So we had a big party in the park for both of them.  We had Key Lime pie and some snacks.  I wrapped up a new football for the guys to give to Josh and he cherished that ball like no other.  I'm sure it always reminded him of those friends that wanted to see him every day just as much as Josh wanted to be with them. 

   After spending a couple of months in Key West I discovered that Kauai was probably right around the same "cost-of-living" for a long term stay and I decided our next extended stay should be Kauai.  There has been no place on earth I've been that is more beautiful!!  The lush green of the huge trees and jungles with the majesty of the mountains and the breath-taking color of the ocean- there isn't a view in Kauai that isn't spectacular.  And I never knew there was a place you could be on beaches so huge with so few people around you!  We went in the beginning of December and stayed for almost two months.

    Many friends came to visit and stay with us during that time.  We stayed at a beautiful place just a couple miles from the best beaches on the island.  It was just a short drive every day to be at "Josh's Beach" as I began calling Hanalei Bay.  We went there first almost every morning so that Josh could play football while I did Yoga and some writing.  There was a large grassy area before you hit the sand and the view there is breath-taking!! Josh loved to engage local surfers or the lifeguards as they passed by calling out "HEY!"  They would turn around and look towards Josh and he'd toss the football to them in a perfect spiral! When we were getting ready to leave to go home one of the lifeguards gave me an official Kauai Lifeguard T-Shirt for Josh to take home- He told me they never give them to anybody but that Josh had become quite special to all the lifeguards and that they really wanted him to have a shirt.  Josh made friends wherever we went because REALLY:  He loved EVERYBODY!!!

    The second half of our days on Kauai were spent at "Mom's beach".  A short drive from Hanalei Bay were the beaches filled with coral on the sand where I could snorkel while Josh tossed coral and played more football.  The reefs on the north shore were just steps into the water in places and within minutes I was swimming with all kinds of colorful tropical fish.  Josh hardly went in the water but he liked watching me swim.  I tried to get him to come in often but my friend Chuck was the only one who was successful with inspiring Josh to swim.  One day when I swam a couple of hundred yards off the shore with a friend out to another reef Josh was on the beach with a bunch of friends.  As we headed back to shore I looked up and saw Chuck and Josh waving at us and Josh was in up to his chest!!

    I always found traveling and meeting new people to be very exciting and expanding.  It helped me see my regular life at home from a new perspective and more than that I have an incredible treasure chest in my head of memories of times I spent with Josh.  We had so many adventures in far away places that I could probably write a whole book about our experiences. Maybe some day.  But for now I'm happy to share some of our adventures here with all of you who loved Josh so you can know what fun experiences Josh got to enjoy in his life.  And how lucky I am to have shared these times with him. 

    

    

Family and Friends

October 6, 2010

    Although Josh has traveled all over the country and had so many wonderful experiences doing all sorts of things I still believe that if he could tell you what he loved most it would be all the time he spent hanging with family and friends.  It didn't matter as much where we were but that Josh lived his life SURROUNDED by people who loved and included him in regular life.

   From playing basketball anywhere there was a hoop, to singing "Happy Birthday"  around the dining room table- from watching American Idol in the living room, to having a fire in the back yard- from opening Christmas presents to jamming in the woods on drums- Josh was always right there with us loving every minute of regular life with people who loved him.  Mowers, balls and dogs.  Good food and good friends and parties too many to count.  Josh loved to eat but when we were at parties (no matter where they were) often Josh refused to eat just because it was so much more exciting for him just to be with everyone than it was to stop and eat!!

    Josh may not have been able to say your name but he could probably pick out what shoes were yours.  When he'd greet someone he'd smile real big and then look down at either his shoes or yours, initiating a "conversation" about somebody's shoes.  I'll never forget the Thanksgiving when Josh met Susan's niece's husband for the first time and he did the shoe thing.  Next thing you know he and Josh traded shoes and Josh spent the rest of the Holiday looking down at those borrowed loafers he was wearing, just admiring.  I put a photo of Josh looking down at those borrowed shoes in the gallery!

    It's hard to imagine Holidays or parties without him.  It comforts me to know I won't be the only one who misses him- that in fact, WE WILL ALL FEEL THE EMPTY SPACE THAT ONLY JOSH COULD FILL.  And that he came and left feeling so surrounded and so loved and that our connection will remain for eternity.

 

MUSIC (Especially Garth!)

October 3, 2010

     When I was pregnant with Josh he got used to hearing the guitar play.  I learned to play the guitar as a teen-ager and when Josh was born he loved my playing from the start!!  I wrote him a song when he was a baby that I sang to him all the time.  We sang lots of church songs and Josh would sing and clap and began playing the guitar himself at 4 or 5 years old.  One of my all-time favorite photos of Josh is of him playing his guitar at about 5 and you can see his passion for singing as he strummed the guitar hanging on a strap around his neck.  He thought he was on stage himself with almost every song he played!!  I found my two original photos and I just saw on the back that they are from Josh's 5th birthday.  He opened his present, which was the guitar in the photos and began playing immediately!  This was 6 weeks before Jimmy was born!!!

     Driving in the Jeep we sang together for endless hours.  Josh was always so in-tune to music that he could hear the ending of songs as they approached.  He'd lift his arm in the air just waiting for the song to end so he could drop his fist and shake his head like a performer on the stage ending the finale.  If it was a song he really loved on a CD he'd say "More!" as soon as it ended -so I'd hit the repeat and we'd hear it again.

    Everyone who knew Josh very well knew that Josh was THE NUMBER ONE Garth Brooks Fan that ever lived. (country music singer ) Not Tricia Yearwood or Garth's own kids listened to as many Garth songs as Josh!!  And probably no one has said, "GARTH!" more than Josh.  There were days I'm sure I heard "GARTH!"  200 times!!

    The Garth obsession all began when we lived in Johnstown with Susan and her son Nathan.  Nathan went to a Garth Brooks concert and brought home a VHS tape of a Garth concert "Live from Central Park".  We watched it together and that was it!  Josh was hooked!  At times it really was like an addiction to him and he had to be coaxed away from the TV and his Garth videos.  What's really funny is that for over 16 years Josh's favorite Garth video remained the Live from Central Park video.  Over those years he had at least 5 VHS tapes that he wore out and that was in addition to the 4 or 5 DVD's of the same concert he had.  Once on Amazon I ordered 3 of the same VHS tape so I could have some back-ups.  I knew for sure that they would wear out and they weren't always easy to find!

    Sometimes when I'd watch Josh playing his guitar and singing with Garth I would be amazed that after thousands and thousands of viewings of the same tape Josh would act like he was seeing that song for the very first time!  He'd look at me and say "MA! MA!? " and then gasp- (like someone took his breath away) and say "GARTH!" True love.  Only true love remains so strong after so long of the same old thing!  Josh's love and joy for Garth never waned.  I will always feel happy knowing that the last night he lied down in his bed to sleep he had just finished playing his guitar and singing with Garth for one last time.

 

The Early Years

September 29, 2010



    Joshua came into this world with those big round eyes and a beautiful smile that never quit.  He was full of life and energy and I was completely captivated by the little guy who would become most of my world for the next 31 years.  Josh's birth was long and hard and back in the seventies there wasn't the monitoring they do now during labor.  Altho Josh was alert and scored pretty well on his first newborn test scores, he was born very blue-looking and went right into a little "heater" until he warmed up.  We went home in a few days and my world was changed forever. I loved being a mom more than anything and Josh was the joy of my life.

   A friend of mine had a baby a month after Josh was born and when Josh was around 8 months old I began to suspect that maybe Josh's development was a little slower than it should have been.  I would watch the changes in my friend's baby and noticed that Josh was lagging behind in the normal milestones.  It wasn't until Josh was about two years old that I finally knew for sure that he was going to have some special needs.  Josh's first steps weren't until he was 22 months old and his speech was delayed. Despite the questions about what was happening Josh's childhood was fun and adventurous and he did what I did.  We played and cleaned and "built things"!   Josh had his first tool set when he was only 2 or 3 years old- "Toad's Tools" I think was the name of the little kid tool set with real tools that he would use right beside me. My Dad taught me to hammer and saw and drill and I began teaching Josh quite early.  He'd rather have an old board with half-pounded in nails and his little hammer than any Fisher-Price toy on the market!!  Action and noise and seeing nails disappear was so much more exciting than playing with plastic things!

   Josh enjoyed seeing things disappear his whole life- mowing and vacuuming were always favorite activities for him- He mowed up until the day he died!!  Josh began vacuuming the living room soon after he learned to walk.  Seeing lint sucked away thrilled him and the noise of the vacuum made him flail his arms with excitement!!  Vacuuming remained his main household chore most of his life, but mowing was even more exciting!!  For his last few years we had an electric mower that he could easily start and run all by himself. And boy did he love to mow!!! The biggest thrill was riding on the John Deere riding mower which he did for years!!!  I'll never mow a lawn that I won't remember how fun Josh could make even the most mundane household chore!! Josh never had a separation between work and play and I hope to expand my own capacity for that wonderful trait!! Work is play and play was work too!!  Josh did everything with all his strength and would play many sports for endless hours until he was soaked with sweat!!

  Josh was officially diagnosed with mental retardation and developmental delay when he was two years old, but it would take another 25 years before we would learn the whole story about Josh's genetic condition. In 2005 Doctors discovered a rare genetic condition called MeCP2 Duplication Syndrome.  And although Josh started receiving therapies and attending special classes and schools when he was so tiny (just two and a half) it would take a very long time before our understanding of his condition would expand.  Josh's diagnosis of MeCP2 Duplication didn't come until 2008 after much testing following a really hard year for Josh. Here is the link for a website with more information on MeCP2 Duplication: www.mecp2duplication.com

   At present there are less than 200 people in the world diagnosed w/ Josh's genetic condition.  It almost always affects boys and it can be inherited altho Josh's mutation was spontaneous and not inherited.  Unfortunately 50 to 75 % of children born with this problem don't make it to 19 years of age.  Josh was a fighter and lived an exceptionally long life filled with so many adventures.  He brought so much joy to so many people- and boy did he HAVE FUN!!!  Read on!!

Brotherhood

September 29, 2010



   When Josh was five his world was rocked with Sweet Baby James!!! From the time Jimmy was born Josh always called him "DEE" and Jimmy would be his life-long hero.  Josh loved to hold Jimmy and was so gentle when he would kiss his forehead and bring him toys to entertain him.  They began wrestling together before Jimmy could stand up!!!  Josh was always a little guy and Jimmy could hold his own!!  Running and playing together Jimmy soon became the little "BIG" brother.  I have vivid memories of Jimmy at 2 years old coming to tell me what "Josh was getting in to- and mommy, you better HURRY!!"  Josh would be attempting to empty the kitchen cupboards or disassemble something but his little big brother was always watching out for him. 

   As the boys grew up Jimmy excelled in sports and nothing could make Josh happier!!!  There was hardly a day we didn't play some sport together as long as it was decent weather.  Football, basketball, baseball, golf, biking and swimming.  Josh learned to throw a perfect spiral on the football before most kids could figure out how to hold it!!  I think Josh loved football the most- and maybe it was all the memories he held in his mind of seeing Jimmy run down the Newark Catholic football field scoring touchdowns!!  Jimmy was quite the star (MVP) of his team and nothing could please Josh more!!!

   Basketball was the first place I really got a glimpse of the determination Josh had in him.  Jimmy was always a good shot, but when Josh was about 12 years old he was determined to get that ball into the hoop like his brother did.  For six months Josh shot and shot and shot again and never made one basket- it was just a little bit too high!  But then came the day!!  Jimmy and I celebrated with Josh as FINALLY one went in!!  It didn't take long before Josh could shoot foul shots and only "kind-of" glance toward the hoop.  He could make six out ten foul shots without even looking!!  He made us laugh all the time while looking so cool making those shots!!

   When we lived in the country in Johnstown we had enough space for Josh to take a crack at golf- and that he did!!  If he got a hold of a ball on occasion- LOOK OUT!! We spent lots of time chasing and finding those wild golf balls!!  Once Jimmy had a putt-putt party in Westerville with some of his friends and Josh tried to participate.  After getting hold of those balls in Johnstown Josh never could get the hang of toning down enough for putt-putt.  On the course in Westerville he knocked one over the building and into the parking lot.  That was the end of Josh's short putt-putt career!

   Swimming was another one of Josh's favorite sports.  We have always loved the beach and pools and had a pool in our yard for many years.  Josh was quite young when he learned to swim and play with everybody in the pool.  He loved dunking and splashing people- teasing and being as annoying as any other boy in the pool! (Yes, as annoying as Jimmy or Nate!)  If I had a dollar for every time he tipped me off a raft I'd be rich!! Josh has been swimming in the Atlantic and Pacific oceans too!!

  Jimmy grew up and now lives out of state.  When he moved he gave Josh a big photo collage with lots of photos of himself. Every night for years before Josh went to bed the very last thing we would do is kiss every picture of Jimmy on that collage. How Josh loved his brother!!!