Be Brave for John-John.

John-John in North Wildwood, 1983

He was the antithesis of me.   He was outgoing, while I was introverted.  He was funny, while I was timid.  He was a daredevil, while I was a scaredy-cat.  He was short, while I was tall.  He was everything I ever wanted to be.  He was my big brother, John-John.

I still remember it like it was yesterday.  I was sitting in the front seat of my parents station wagon, and we were driving to Our Lady of Lourdes Hospital in Binghamton, NY.  I was going to say goodbye to my brother.  I didn’t fully understand what that meant, since I had just seen him a few days ago.  The day before, my parents had pulled us into their bedroom at our cottage at Heart Lake, to tell us something no parent should ever have to tell their children.  I sat in my Dad’s lap as he told us the unthinkable.

“God needed another point guard in heaven.  And he chose John-John, since he’s the best.”

I nodded, but didn’t truly understand what that meant until John-John didn’t come home with us when we packed up and left the Lake.  Now what?

John-John and Suzy. North Wildwood, 1978.

Understanding my relationship with John-John is possible with this simple story.  We had just moved to Pennsylvania from New Jersey.  I was starting Second Grade, and he was Third.  We were 20 months apart in age, but only a year apart in school.  Mom would say that I wanted to start school early because I wanted to be with him.  So, at age 2, I started nursery school at Greentree Elementary School in Marlton, NJ.  Not sure exactly what I could learn at that age, but all that mattered was that I was with John-John.

So when it came time to start Second Grade at age 6 at St. Rose of Lima Elementary School in North Wales, I was petrified. John-John, on the other hand, was psyched.  I told my parents that morning that I didn’t feel good, and could I just skip the first day.  They, of course, told me that I would do just fine.  Don’t worry. John-John would be there with you.  So, off to school I went.

I rationalized my anxiety- I would just go to this new school, blend in quietly and I’d be home soon enough.  Much to my chagrin, St. Rose of Lima did the morning prayers outside as an entire school. As a part of the prayers they asked every new student to come up in front of the entire congregation and introduce themselves.  Dear Lord, I was petrified.  John-John trotted up there, proud and smiling.  I walked up, and stood behind him, out of sight from the students that were staring at us.

The principal went through all of the new kids—What’s your name? Where are you from? What grade are you in, etc?  When it got to John-John, who at this point is still hiding me from the other kids, grabbed the microphone and emphatically introduced himself as John-John Carney from Marlton, New Jersey.  I play basketball and I’m in Third Grade.  Clearly, this was one cool kid.  The principal found me behind him, nudged me out from the back, and handed me the microphone.  Tentatively, I whispered “I’m Suzy. I’m in 2nd grade. I’m John-John’s little sister.”  And that’s how it was.  I was John-John’s little sister. It was a role I was proud of, and a role that I treasured.

It was a role I was not ready to relinquish at age 9.

John-John. Marlton, NJ.

I was convinced, from that first day at St. Rose, that whatever he did, I would do too.  I would be friends with his friends.  I would follow him to Lansdale Catholic High School, and subsequently, whereever he would go to college.  I would marry one of his friends.  I would even cheer for the Dallas Cowboys, his favorite team, much to my NY Giants-loving Father’s displeasure.  I was perfectly content t0 be in his shadow.

I started school a few weeks after he died, and I knew that my life would never be the same.  I remember thinking to myself, I have to be okay because I’m the oldest now.  People were counting on me.  However, the transition back to school was tough for me.  I became the kid whose brother died.  I was the kid whose teachers would always pay special attention to, because her brother died.  I was the kid who started getting bad headaches.  No one questioned me when I went to the nurse’s office because I was the kid whose brother died.  In grade school, it  defined me.  It was who I was.  I found it hard to fit in after that summer, because I was forever changed. Where I did find solace, was with the boys in John-John’s class.  They took me under their wings- from Anthony, to Michael, to Peter.  They all would go out of their way to me.  They taught me how to throw a football during recess on the school yard.  They would keep an eye on me.  They always made sure I was okay.  They became my adopted Big Brothers.

Suzy and Peter, Bryn Mawr Rehab, 2011

In fact, when I was at Bryn Mawr Rehab, I was having a particularly hard day, and was really missing John-John.  That evening, when my family and I were having dinner in the hospital’s Family Room, in walked John-John’s best childhood friend, Peter.  It was like John-John knew that I needed some extra strength from him.  He sent someone to show me that he was thinking of me and pulling for my recovery.  And to remind me that I needed to just toughen up, and be done with GBS.  I was so inspired when I saw Peter.  The next day, I got on the treadmill for the first time and walked, with the assistance of the machine.  He still finds a way to send me strength.

First Day on the Treadmill, Bryn Mawr Rehab, 2011

As I got older, the anxiety of being attached to a tragedy subsided a bit. First, at the Mount. Instead of being the kid whose brother died, I was surrounded by other girls who had lost family members as well.  I remember sighing in relief after a religion class when several of us broke down crying because we had all lost someone close to us.  A mother taken too soon, a grandfather’s sudden passing, a brother dying of a brain aneurysm at age 11.  Suddenly, I wasn’t alone anymore in my grief.  I had found others, just like me.

However, even with more time, I still struggled to share my experience with others, especially new friends. Instead of saying “I’m the second eldest of 7 kids, I say I’m the oldest of 6.”  I didn’t want to answer the question- What’s your older brother do?  Are you two close?  I hadn’t really healed yet, the wound while 15 years deep, still felt very fresh.

Only a few close friends knew about John-John.  I didn’t want to be “that girl” that you either handled carefully or avoided altogether because she had been through tragedy at such a young age. I didn’t trust that people would be accepting of me.  So, I kept it to myself, and therefore, kept all of my memories of John-John locked inside.  Selfish I know, since some of my best memories in life, to this day, are with him.

Mom and the Carney Kids. 1983.

I think about this so much now that I’ve been diagnosed with GBS.  I have the definition of being a girl who has “something” that’s different about her. Something unexpected happened.  Something almost tragic happened.  Something that was unplanned happened.  And now, I am singled out, again, as being different from everyone else.  However, the way I deal with this now is that I embrace it.  Yes, I can’t walk well, but boy do I have a cool cane to support me.  Yes, I can’t stay up late, but the circles under my eyes are gone.  Yes, I can’t party like I used to, but I do not miss the extra calories from Bud Light Lime.  So, I have learned so much from the tragedy in my young life and applied it here, to my recovery.

John-John was always telling me to toughen up.  He would torture me, as only big brothers can, just to make me tougher.  He always thought I was a wimp, and that I needed to be braver, like him.

Be Brave.  

Pop Sciolla and John-John, with Duchess. North Wildwood.

He wouldn’t let me in.  I’m afraid of thunderstorms.  Petrified actually.  So when I was 8, there was a terrible thunderstorm at home, and I was looking for shelter from being afraid in my room.  I stood outside his bedroom door, begging him to let me in his room. He told me to knock it off, and go back to bed. I needed to be tougher because storms weren’t scary. See.  He wasn’t afraid.  I stood there, for what seemed like ages. He finally succumbed and let me in his room.  I fell right asleep because I felt safe with him.  To this day, I’m still afraid of thunderstorms, but like he said— Be Brave.

Dad, John-John, Bobby and Michael. Heart Lake, 1982.

He loved candy.  And, being a Juvenile Diabetic, it wasn’t the best for him.  He didn’t care.  One afternoon, he wanted to sneak up to the candy store at Heart Lake, and he made me promise that I would cover for him.  So, he started the run up the dirt road, and Mom can out wondering where he was.  I fibbed and said he went swimming in the Lake.  A few minutes later, he arrived, out of breath, a bag of candy stuffed in his shorts, and we ran upstairs.  We climbed into the loft of the bedrooms at the house, and started eating the candy.  He would save it up there for us to enjoy later.  He ran all the way to the store (about 1/4 mile) by himself!  Whenever I walk the Lake now, and see the store, I always smile at the confidence of this 10 year old boy.  Be Brave.

John-John, Suzy and Katie, North Wildwood. Could my shades BE any cooler?

He left me high and dry.  We spent Augusts in Wildwood, NJ.  Every day, we went to the beach.  I would always follow him into the water.  There was a sandbar, that was over our heads that lead to the actual ocean.  I wanted to go, but was only allowed if John-John stayed with me.  On the way out, since I couldn’t swim well, he had me piggy back and he swum us over the deep part and got us to the ocean.  After a few minutes, he was bored, so he swam back to shore—without me!  I stood there, unable to follow him, and I started to cry.  ( I know, it’s still embarrassing telling this story).  He ran back to the towels where my mom was sitting with my younger sister and brother.  My mother alerted the lifeguard, and he “rescued” me from the 3 feet of water.  He carried me to the sand, and back to my mother.  A crowd had gathered, because it’s always a big deal when there is a rescue. Who knew that it would be a 6-year-old girl whose brother left her stranded on the wrong side of the sandbar?  I hid behind my mother’s beach chair until the hoopla died down.  Boy, did he get in trouble after that.  I couldn’t help but wonder, why did he leave me out there?  He was trying to toughen me up.  Be Brave.

John-John, Me, Katie and Bobby, North Wildwood, 1980

He got broke all of the rules.  Probably my favorite memory of him was at Heart Lake.  He took me and my friend Lauren Kelly out on the canoe.  Neither of us knew how to paddle–we were 8 years old, so this wasn’t uncommon.  He was in the back, steering the boat.  We got to the middle of the lake, and he decided he didn’t feel like being in the canoe anymore.  He stood up, dropped the oar in the boat, and dove off the side of the canoe into the lake.  He swum back to shore.  He left two 8 year olds in the middle of Heart Lake with absolutely no idea how to paddle!  My parents, once they disciplined him, yelled at us from the dock about how to paddle the boat and steer it back to the dock.  John-John jumped ship in the middle of the Lake forcing me to face my fears and get myself to safety.  Be Brave.

So, one day, I decided to take all of his tough love to heart, and finally Be Brave.  I remember the day that I ripped off that bandaid, and really let myself feel the loss of my brother.  I let myself hurt the way I should have hurt as a young 9-year-old.  Since that day, I’ve worked hard to incorporate this healing into my life.  I let it hurt when it’s supposed to, so that it doesn’t surprise me on a day when it shouldn’t.

His death has defined me for so long.  For years it defined how I managed my relationships and my openness to new people.  Now, I embrace it.  It has enabled me to live my life more fully.  There are definitely days when getting out of bed is challenging.  When my body doesn’t want to work.  When I feel sorry for myself since being diagnosed with GBS.

Entire Carney Family at Michael & Lindsay's Wedding. 2009

But then I remember John-John.  He didn’t get a chance to wake up every day.  To grow.  To go to Lansdale Catholic. To fall in love (even though he did have a major crush on my neighbor, Cecilia).  To go to college.  To have a family.  To stand up for his brothers at their weddings.

I live my life in large part to honor the boy who would never become a man.  To channel the energy and zest he had for life that was never realized.  To laugh and be devilish for a boy who lived for practical jokes and getting in trouble.  I will never truly be “over” losing my brother.  It hurts Every Single Day.  Some days it hurts more than others.

Dad, Pop Carney, Aunt Anna, John-John. Heart Lake, Montrose.

Losing John-John has forever changed my life.  It has made me a much tougher person. It has made me a strong person.  It has made me a braver person.  All of which I need now to fight this battle with Guillain Barre.  The life lessons I learned as a scared 9 year old have made me the resilient person that I am today.  I know he is still with me, fighting right along side of me, reminding me to Be Brave.


So Today, on 39th Anniversary of his birthday, I remember the boy who was my best friend.  The boy would always stood up for me.  The boy who taught me to live a big life.  The boy who made me face my fears.  You never know how much time you have, so live.  I know that John-John did.

If you have a favorite memory of John-John, please do me the honor of posting it on my blog.  It would mean so much.

Happy Birthday John-John.  You are desperately missed.

I promise you this though, I will Be Brave, Every Day.

Thank you for joining me on my journey.


12 responses to this post.

  1. Posted by Judy Kelly on February 7, 2012 at 8:18 AM

    Of the many memories I cherish about John John the most outstanding is one from a day during the Carney clean out assault on Aunt Anna’s house after she passed on. Carney and Kelly kids resembled prairie dogs as you popped out every window of that Church St home discarding household goods high and low. John John, always at the top of the heap, was perfectly framed by the open attic window beaming as he tossed Christmas wrapping paper rolls from the highest attic peek into the dumpster 2 stories below. Based on his smile you’d think he made the winning basket of the final four with each toss! Who knew heaven would be his next stop!


  2. Posted by Emily Maier on February 5, 2012 at 6:34 PM

    Dear Suzy,
    Thanks so much for this post!
    I will forever remember that devilish 11 year old, John-John. He did have a zest for life and sometimes were not enough hours in the day to do all he dreamed up His was a life full of adventure.

    There was an air of a urban legend surrounding him amongst the local babysitting crowd, a circle I was just on the cusp of joining. The whispers of “Did you hear? John-John rigged his bedroom door. If he calls for you to come in his room after he is suppose to be in bed for the night, DON’T DO IT! The last babysitter got a bucket of water dumped on her head!” Truth or rumor…you tell me. You were there!

    Our family was out of town when John-John passed away. I remember coming home to West Prospect and feeling the void. How strange to not see him shooting hoops or zooming up the street on his bike. How difficult it must have been for your family to endure his loss. I remember Michael, such a little kid (what was he… 3 or 4 years old?), telling how he was going to get a really big ladder so he could reach John-John in heaven.

    John-John’s spirit resides in every Carney family member. Continue to tap his 11 year old energy whenever you need it. It is his gift to you.
    Love, Emily


  3. Suzy, I read this out loud, sometimes through tears to your cousin, Frank this morning. I remember the yearly Christmas photo cards that your mom sent out. The first year I received the picture without John-John’s smiling face made me think, how different that Christmas must be for you all. Of course, I am Catholic, and I believe in Heaven and Hell. But, I have had personal experiences that make me believe they are not remote in terms of distance, just dimension. I believe John-John is closer than you realize, as are all of our beloved dead. There are moments when they are able to be on our plane a little while, now and then, and if we are perceptive, we will feel them with us. God bless you as you continue your “journey” with GBS, and thank you for sharing your brother with us.


  4. Posted by Mike Collins on February 4, 2012 at 2:46 PM

    What a great tribute to your brother! I still remember him like it was yesterday and loved playing with him because he was so much fun. I still have your home phone # memorized 699-3871 because I called your home for two straight hours one day trying to invite John to play. I was touched that Peter, Anthony and I were able to provide you with some comfort. Please tell your whole family hello for me and continue to stay strong.


  5. Posted by Jill Whitten Rice on February 3, 2012 at 9:10 PM

    What a wonderful tribute. I am certain he would be proud of the woman you have become. You have an angel watching over you.


  6. Posted by Jen Goodwin on February 3, 2012 at 7:43 PM

    Suzy, You continue to inspire me. I didn’t know John-John but I wish I had, He sounds like the perfect guy – even at age 11. Love you!!!!!! stay strong,


  7. Posted by Laura Scappaticci on February 3, 2012 at 6:28 PM

    Thank you for this beautiful post. As the person in my life who dealt with grief and talked about it (in a shy, but lovely way), you helped me deal with my one losses later in my life. Lots of angels watching us all.


  8. Posted by healthylivingresources on February 3, 2012 at 5:44 PM

    Suzy……….What a beautiful tribute to a little guy who is still 11 in our minds and hearts. We know John John will watch over you and all your family as you travel around the world to Africa to celebrate Claire and Bob’s wedding. You are a special person and I am honored to be your Godmother. Love, Aunt Grace


  9. Posted by Jeanie Tini on February 3, 2012 at 5:23 PM


    All I can say is WOW!! even though I didn’t know your big brother, after reading this in tears, I feel like I do!! What a special piece of him you carry – you are such a strong, beautiful person and I know he is so proud of you!!! God Bless You Suz, you are doing a fantastic job!!! Keep it going……



  10. Posted by Cheryl Jarvis-Johnson on February 3, 2012 at 4:36 PM

    Suz, if there was ever a question in my mind about your healing and development, it is gone. I remember the day you told me about John-John in my kitchen. Looking in your face I remember feeling as though you were going to tell me something so devastating that I did not know if I would recover (you know how I can be narcissistic). After you shared your information, I remembered 2 things: 1) relief that I didn’t faint and 2) a responsibility to cherish your confession as it was obvious this information was precious.

    To hear you talk openly about this little love of your life really reinforces in my mind amazing healing that impacts every part of who we are natural, physical, spiritual….and what God can do to the spirit even when we are not noticing.

    Reading this I want to cry, but I can’t I am just smiling about you! You go ahead girl! you go ahead!


  11. Posted by Kara Givnish on February 3, 2012 at 10:41 AM

    Thanks for sharing all this Suz! You are so strong!!!

    I was too young to remember John-John but I often asked my mom to tell me about him. I would ask endless questions about what he was like and what he did and everything under the sun. Through the years I would ask the same questions just to be reminded about him, about the oldest Carney boy.

    We are so blessed to have lived and grown up across the street from the Carney family. To share the fun and excitement of a big family along with the hardships. There was always a feeling of comfort looking from our house to yours.

    Hugs to you today and always!!


  12. Posted by RaVonne on February 3, 2012 at 9:10 AM

    Suzy – your story brought tears and smiles!!! I never knew about John-John, simpmy knew you as the oldest of 6. He IS so proud of you, I’m sure!! You are carrying on his zest and passion for life and joy!! Continue on your journey! 🙂


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