SLIDE SHOW

I made a slideshow of Johnny's amazing life and my cousin Greg put it on the web for us.  It's probably too long for the average person but it is everything from the moment he was born through his birthday weekend before he went into the hospital May 26.

MOMENTUM

This was sent to me today from one of Johnny's teachers he had last year.

I guess every parent who loses a child has the fear that the child will be forgotten.  I don't think that is what will to Johnny.  It seems like suddenly is more popular than ever -- kind of like Elvis or Curt Cobain.  And I am totally fine with his popularity, it tells me Johnny Romano will always be with us, still making a difference.

Mike and I want to start a foundation in Johnny's name, having all funds go to research.  Tomorrow I am meeting with Rene (she's so awesome) to discuss how to establish the foundation and what it will entail to get it off the ground.  Of course, I will always keep you guys posted...

"So, how you doing?" -- the dreaded question that is asked of us many times a day.  Usually my answer is 'Meh', or pretty good.  Luckily people don't know what to say after that so the conversation usually turns to another, more happier topic. I'm pretty busy tying up loose ends all day and running errands and hopefully start writing thanks you's.  If it weren't for the little stuff that needs to be done, I'm not sure I would get out of the house, much less take a shower.

Most of the time I'm okay with the fact Johnny's not with us anymore, then something will trigger me and I fall to pieces.  I know he was sick, really, really sick and there were times when things were bad I would pray to God that if he really wanted Johnny, to please take him so he wouldn't have to endure such pain.  I don't blame God, or anyone for Johnny's passing -- I totally believe there is an afterlife and we all have our Angels that watch over us.  I think what makes me cry the most is all the shit he had to go through -- that part tears me apart.  I pray to Johnny every night that I hope he forgives me for making him go through such rotten shit for so long.  

Tuesday was a bad day for me.  I couldn't stop crying and I just couldn't understand any of 'it'. Why did he have to go through so much pain the past 4 months -- all I could think about was watching him take his last breath and watching his heart beat for the last time.  How horrible the entire process was -- why does this have to happen in such an ugly way?  I had to go to Texas City for some Ike aftermath paperwork and I cried the entire way -- over an hour.  I was in the parking lot at the location and tried to compose myself before I walked into a crowd of FEMA people.  

As I sat there I listened to the radio -- an oldies station that Mike always listens to.  Usually when i get in the car the first thing I do is switch the radio station, then put on my seat belt.  Except this time.  I heard a Beach Boys song California Girls, which wasn't one of Johnny's favorite bands or songs, but lets face it -- he's a red blooded American boy and like California Girls.  So I kind of chuckled to myself, thinking that it was Johnny's way of telling me he's right here with me.  Then another song came on, something I have never heard before -- not sure of the title but the lyrics talk about a guy named Jim and his Superman cape.  That definitely caught my attention -- the song also had Jack's name (Jim's son) and the state of Alabama (that's where Jamie Thomas is from).  So I verbally asked Johnny if this was him talking to me and was with me.  

The next song that came on was Some Kind Of Wonderful.  I was familiar with the song but never really listened to the lyrics until now.  I'm totally certain whom ever wrote the song, wrote it about the love of his life -- a girlfriend or wife -- but the words could fit the way Johnny felt about me (or so I like to think...).  It seemed like every question I asked Johnny he replied with a song that if you listen to the words, could be Johnny's reply to me.  

Sometimes it was just a line or a verse but it still comforted me enough to get out of the car.  I can't remember the questions I was asking but I remember the songs that followed.  Everlasting Love, Miss You and Free falling.  I do remember the last question I asked -- was he happy with our idea of a Foundation for leukemia research, and the songs that followed were Come Together, You Ain't Seen Nothing Yet, and his last song was Iris (about missing someone who has passed).  

I stopped by the cemetery and it looked beautiful.  Uncle George pays a landscaper to plant seasonal flowers and to cut the grass -- so where Johnny's body is of course looks better than any other plot.  And who names all these places anyway?  Every term used to define that place is ugly, so I decided to call it the Romano Family Garden, because that's what it looks like -- a beautiful garden. I know Johnny isn't really at the cemetery, but it still felt good to stop by and say hi to him.  Of course I lost it and had a hard time composing myself, so I hoped back in the car to leave.  When I got in AC/DC was playing -- one of Johnny's favorite bands, so I quickly changed the station and it was another AC/DC song -- must be a coincidence -- so the third time was a charm and YEP, you guessed it another AC/DC song.  I couldn't help but laugh.   

I was certain Johnny was with me all day long, helping get to the next hour of the day. for the rest of the day it was just random songs playing until I picked up the kids.  As soon as Joey stepped in the car one of Johnny's favorite songs came on and Joey commented that he wished Johnny were here to listen to it with us.  I said, "Oh don't worry, he's here alright!".  Then some random comment about putting 'lipstick on a pig' came on, this is one of Johnny's favorite sayings -- along with 'you can't polish a turd'. Thanks Kristin! 

We laughed and remarked about how it always made Johnny laugh, then AC/DC came on.  After that came the Ramones.  I knew it was Johnny saying 'Hi' to the kids and welcoming them after school to talk about the day.  I told Mike about my day and he was less than impressed.  All he said was, "Huh.  Maybe it was Johnny", his sentence reeked of skepticism. I think it's the 'psychologist' speaking and that science tends to think there is no such thing as divine interventions.  Or maybe he was jealous Johnny spent the day with me -- who knows.  

Okay, here comes the paranormal mumbo jumbo.  We went to bed and I said my usual prayers to Johnny and thanked him for staying with me, then fell fast asleep.  About 4am I woke up in what I thought was a dream, I was looking down at myself and I was snuggled up with Johnny.  I was so happy all I could say was "I love you, I love you, I love you". As I held him, I could actually feel his weight, like I was really holding him in my arms. I ran my fingers over his and saw how beautiful his skin looked.  The connection seemed to have lasted a very long time, but never long enough.  We talked a little, but not using verbal words, just thoughts -- most of which I can't remember and then he told me it was time for him to leave.  I begged him to stay, but as I looked down to snuggle him he was gone.  I was so happy.  I looked up and saw him leaving with a few other people and then I woke up.  

It seemed so real.  I could still feel his weight pressing against me snuggled up next to my stomach like we did so many times before.  I haven't told anyone yet -- so why not tell everyone at once!  To me it was a real experience and perfect ending to a perfect day.  I'm sure a lot of people will try and discount what happened, but I don't care. I guess you could say I was grieving and tried to find something when there really wasn't.  You could say that when Johnny left, it looked like he was in line boarding a flight -- of course a few days earlier we flew SWA -- so that must be the connection.  Whether it was real or not, it comforted me and helps me have more "I'm okay with it" moments than "what the hell just happened the past 4 months?".

We're Back

We got back Saturday night from a week in California.  Julie and I really needed to take the kids and go do something fun for a little while.  We really did have a great time.  We got to see some old friends, and made a few new ones.  We also hit a couple of amusement parks during the week, while school is in session.  That was really cool, but I was still really surprised at how many kids were there.  I'm sure Julie will post a few pictures.

The trip was good medicine for us, but it was tough being there without Johnny.  

The Johnny Romano Skate Jam For Make-A-Wish

How cool is this?!?

Johnny Lives On - Roll Forever!

TEXAS SKATE JAM FOR MAKE-A-WISH RENAMED IN HONOR OF JOHNNY ROMANO

(HOUSTON, TX) – October 6, 2008 - Southshore Distribution and Fallen Footwear are proud to announce that the annual “Texas Skate Jam For Make-A-Wish” has been renamed “THE JOHNNY ROMANO SKATE JAM FOR MAKE-A-WISH” in honor of 10 yr. old skateboarder who passed away Sept. 23, 2008.

As skateboarding’s largest and most well-known charity event, The Texas Skate Jam has raised over $400,000.00 for The Make-A-Wish Foundation since it’s inception and will continue to raise money for the charity under its new name.

“Damian and I met Johnny in 2005 and felt an instant connection with him. He was an everyday skateboarder that was facing a life-threatening illness with the greatest display of courage we’d ever seen. He truly embodied what the Texas Skate Jam was all about and we’re stoked to have the event continue in his namesake.” - Jeff Taylor, Event Co-Chairman


“It has been a privilege to get to know the Romano family and I’m thankful for the opportunity to get more involved with this special event. Johnny has been an inspiration to us all and renaming the event in his honor will hopefully help keep that inspiration going.” - Jamie Thomas

“We’re honored and stoked to have Johnny’s name associated with such a great event.” - Mike Romano, Father

Over 50 top professional skateboarders will travel to Southside Skatepark in Houston, TX on November 8, 2008 to compete in a series of “best trick” contests to support the cause.

Sponsors of the 1st Annual Johnny Romano Skate Jam for Make-A-Wish include Fallen Footwear, Southshore Distribution, Zumiez, KR3W clothing, Spitfire Wheels, Zero Skateboards, XingTea, Southside Skatepark, Independent Trucks, Transworld Skateboarding Magazine, Thrasher Magazine and Spotlight Productions.

For tickets and general event information, go to http://johnnyromanoskatejam.com

# # # #

ABOUT MAKE-A-WISH FOUNDATION: The Make-A-Wish Foundation grants the wishes of children with life-threatening medical conditions in order to enrich the human experience with hope, strength and joy. For more info, go to http://wish.org

ABOUT SOUTHSHORE DISTRIBUTION: Southshore Distribution is one of the largest distributors of skateboard hardgoods in the United States. Southshore’s President, Damian Hebert, is the founder and chairman of the Texas Skate Jam For Make-A-Wish. For more info, go to http;//skatenet.com

ABOUT FALLEN: Fallen is a footwear and apparel brand dedicated to skateboarding.
For more info, go to http://fallenfootwear.com

 

CHAOS GOOD -- ROUTINE BAD

To say the past 2+ weeks have been chaos for us is such an understatement it's pathetic. It has been the darkest days for our family, but we are surrounded by incredibly loving family and friends who have helped ease our pain.

During the chaos of Ike's aftermath, we had the difficult task of planning Johnny's funeral.  Last Tuesday we enrolled the kids in school and they seem to be adjusting very well.  Sophie has Johnny's Homebound teacher from a few years ago, and Joey is back with all of his friends he's had since he was in kindergarten.  Finally, a little comfort and stability. I guess the chaos has kept our minds busy with mundane tasks and details, but as we slowly get into a routine it starts to sink in Johnny isn't part of our routine anymore. 

It's so hard to understand,  I can't even wrap my mind around it.  He wasn't even a kid, he is still a little boy, practically a baby -- barely ten years old -- he just got into the double digits. Simple things like a child's birthday party nearly brought me to my knees.  I watched an adorable little boy smile and say 'hi daddy!' to his dad and I was so jealous I had to look away. Our long time friends have 3 kids all about the same age as ours and to watch them play together tore me apart. What do I say when people ask me how many kids we have?  Do I tell them three or two? Either way it sucks. I think the more things settle down, the harder it will be -- at least for me. Hopefully our time in CA will delay facing a routine one more week.  

It's seems insane to try and think of the 'good things' about Johnny passing.  As I sat next to Johnny day after day, it was hard to remember what it was like when he was well, but now when I think of him, that is all I can think of, not the 'sick Johnny' that was bed ridden for 121 days. A very good friend of ours had a dream the other night, and she told us she saw Johnny in heaven playing croquet with all of the other children in heaven laughing and having a ball.  I can't wait to see him one day doing  just that and we are all together again.

So, What's Next?

When I think back to everything that has happened I can't believe its only been eleven days since Johnny passed.  It seems so long ago that everyone was here for the funeral, but it was only last weekend.  

What's next for Johnny?  That may seem like a strange question, but Julie and I have been thinking about it a lot.  There are people all over the world who have followed Johnny's fight against leukemia, and many have been moved to action by his story.  We want to keep that momentum going if at all possible, and have decided that we will start a foundation in his name to support the search for better treatments, and possibly a cure for childhood leukemia.  We also have some ideas on how to help kids get through the "experience" of being sick for extended periods that we want to explore.  Many have already donated to help with Johnny's medical costs, and once those expenses have been met any additional funds will be used to seed the foundation.  I will post more information on as we flesh out the details.

So what's next for us?  I've been down to Galveston a few times to meet with insurance adjusters, and start cleaning up a little.  It's pretty depressing down there right now.  It's somewhat strange to have a Red Cross van stop by the house and ask if I need a hot meal or cold water.  Galveston is really only a short distance from Houston, but it is a world away regarding the damage and devistation done  by Ike.  My house is by no means ok, but there are many on the island who have lost everything.  I consider myself lucky to still have a home.  The downstairs is a total loss.  Everything will have to be torn out since there was salt water up to the top of the doors.  The main living area upstairs did much better, but there is more damage than we initially thought.  The roof held up well, but water came in under the eaves in several places, and through most of the windows.  Much of the ceiling in the boy's bedroom and kitchen will have to be torn out, along with all of the flooring in both of those rooms.  There is also quite a bit of paneling under the windows that is showing water damage and will need to come out.  That work will start next week.

Until we can move back in full time we will be staying with Julie's parents.  They have a very nice home, and luckily have a "room mate" type floorplan where the guest bedrooms are on the opposite side of the house from the master.  We have enrolled the kids in school up here, and they seem happy to be able to spend some time with their old friends.  Joey has become especially popular all of a sudden, which is fun to watch.

Julie and I will probably spend next week working on the house, or at least cleaning it up, and then we are taking the kids to California for a week.  We will spend a few days with my dad, and then the middle part of the week down in San Diego.  We may get to see some old friends, but it will be nice to spend some time alone as a family.  Maybe hit an amusement part or two, you never know.  After that I will be back at work and things will slow down a bit.

At this time we're not really sure how long it will take to get back home full-time.  Most of our friends are already back, and a few of the schools are starting back up on the island next week.  I'm definitely home sick already, but it will take a while before the west end of the island is back up and running.  Julie's parent's vacation house in JB sustained very little damage, and should be livable as soon as Jamaica Beach has water and electricity back up and running.  That will give us a place to stay while working on our house, and the Battens have offered the house to us if we want to move back down before ours is ready.  That's a nice option, and it will really just depend on how the kids are doing in school up here, and when Julie is ready.

Right now it's just one day at a time.

Onward still.

Mike 

SO SPECIAL

A lot of people think Johnny is special, especially us -- but it's hard for Mike and I to wrap our heads around why he was so special to complete strangers.  He has that sparkle in his eye that always came through and touched everyone he met.  Chicks love him.  

I distinctly remember his kindergarten open house with Mrs. Tucker (she had Joey a few years earlier, so she probably thought Johnny would be a snap...) -- she pulled Mike and I aside and with a very serious tone told us "He's probably the smartest child I've ever had in my class, but you will never know it by looking at his report card (mostly B's and a few C's).  In all my years teaching, I've never seen anything like this before, the girls fight over who will sit next to him during circle time and who gets to do his school work.  And he lets them do it too!!  I just had to put a stop to that right away, because he can't rely on women to do his work, he needs to learn to be a man..."  Mike and I got the biggest kick out of what Mrs. Tucker said that night.  

Obviously he was special way before he was diagnosed.  

I felt the amazing moment Johnny was conceived.  He was born on his due date.  When I was giving birth to Johnny my epidural wore off so I also felt the incredible moment he was brought into this world and it was the most amazing feeling ever -- it literally didn't hurt and I instantly told Mike I wanted to do it again.  After the nurses scooped Mike up off the floor, he told me to wait a few years before we made that sort of decision.  Johnny was our only baby we didn't find out the sex before he was born -- and we were convinced he was a girl.  We were so sure we had a ton of girl names but only a few boy names. Just a few hours before we left the hospital we decided to name him Jonathan Michael Romano.

His favorite all-time movie is Peter Pan.  Mike's mom used to ask him when he was about 3 and 4 years old, when he was going to be a big boy, he always told her "I don't want to be a big boy. I don't want to grow up!"  He loved being a baby (and loves babies) and still drank out of sippy cups -- not the kind with the plastic thing inside to prevent drips and they didn't have handles, but they still had lids and resembled the sippy cup style.

He wore bathing suits 24/7 until about the 3rd grade.  When we met families who had pools I told them Johnny wasn't trying to throw hints -- he just likes to wear trunks -- even during the winter.  The only way we potty trained him was to take away his trunks.  It took all of about 30 seconds and viola!  No more diapers!  He loved to go commando.  

Johnny was diagnosed on Thursday, May 26, 2005.  When he relapsed and started treatment, and was readmitted because of sepsis it was May 26, 2008.  He started and ended his 121 day stay at TCH in ICU. He passed away in our arms on September 23, 2008 which was supposed to be the last day of treatment had he not relapsed.    He was buried September 27, the day Galveston declared it "Johnny Romano Day!".  

It sounds to me like he had this whole thing planned.  Just wish he would have consulted us beforehand... I miss him so much.  I feel blessed I was chosen to be his mommy, even if his visit was only to be a short one.