My Toughest Day

Me and John John down the Shore

Me and John John down the Shore

I was sitting on my porch last night after a long month. I do that now.  I sit outside, weather permitting, and I think about my day, my week, my month.  I typically open up a bottle of red, open all the windows, and put on music that helps me unwind.

A little Kenny Chesney, mixed in with some Daughtry and a little Kip Moore.  This time alone gives me time to reflect on where I am in my life. It’s my quiet time that I relish that helps me recalibrate my expectations and dreams.

It’s been a rocky several weeks.  Not for anything that I can pinpoint, but because life throws you so many curve balls.  Just when you think you have gotten past the storm, another one rumbles through.  And just when you think you’ve handled only as many thunderstorms that you can brave, something else knocks you over.

Suzy, Katie & John John

Suzy, Katie & John John

Things haven’t been easy.  My legs are working. My arms feel good.  My strength is up.  My fatigue is fading.  But yet, somehow, something is missing.  I can’t quite put my finger on it.  I feel good, yet incomplete.  What’s missing?  Isn’t that the mystery in life?  What is missing from my life that would make me feel more full.  Satisfied.  What would make my heart ache a little less every day.

Then I looked at the calendar.  And I knew.  This always happens this time of year.  No matter how full my life is… No matter how many friends I have… No matter how many tequila shots I do… something is missing.  Something is gone. Something makes me sad.

July 30th is the worst day of my life.

A Typical John John & Suzy  picture!

A Typical John John & Suzy picture!

Today is the day that I lost the singularly most important person in my life.

The person that made me feel like I had a place in the world.

The person that made me laugh when he did something bad.

The person that made me feel safest when someone was picking on me in school .

The person that let it be okay that I was shy.

The person that I trusted with all that I am.  The person who made me feel proudest to be a Carney.

Today is the day I lost my older brother John-John.

John John & Bobby down the shore

John John & Bobby down the shore

I’ve told you all the story of him.  I’ve opened up my heart to all of you in a way that I never had before.  I let you all in to an intimate part of my life I had never shared.  The reason I did this?  Because I felt that at long last, after 29 years, it was okay to share this important part of my life.

So I sat at my office today feeling a little blue.  I’ve been blue for a few days for reasons that I couldn’t quite place.  I cried a few times last week about things that wouldn’t have bothered me in June, or in August.  I have felt more vulnerable than I have felt in a while.

When I flipped to my outlook calendar to study what meetings I had this week it dawned on me.  I wasn’t crying over a guy.  I wasn’t crying over too much tequila. I wasn’t crying about my picture being hung crooked.  Or about the guy in Home Depot who made fun of me for not knowing what a drywall hanger was.

John John, Katie & Suzy

John John, Katie & Suzy

I was crying because no matter how many years pass, I miss my brother.

When I got sick, I had so much love by my side, it was hard not to get better.  I had old friends and new friends express unimaginable amounts of support.   I had my parents sitting by my side, biting back tears when they saw me in a wheelchair.  I saw my youngest brother JP afraid to see me because he thought I wasn’t coming home.  I had a dear friend visit who took over my bathroom remodel so it would be beautiful when I finally got home.  I had my best friend bring me a cup of Dunkin donuts coffee and just sit with me as I tried to figure out how the hell I was going to walk again.

The range of emotions was so emphatic, that I thought that I would burst.  But the most important thing that got me through being sick was knowing that I was living and fighting for John John.

The Rowes and the Carneys

The Rowes and the Carneys

Anyone who knows me well knows that I keep my relationship to him closely guarded.  And I often think.. Why?  He was so important to me, why do I need to keep him to myself.  Why?  He would have hated that.  Why? He was loud, boisterous and full of life.  I was shy, guarded and afraid to show my true heart.

Have you ever noticed that things happen for reason?  But, the reason tends to not make sense until it’s behind you?  Why do people come into your life for such a short time?  Karen (my best friend) and I talked about this at length recently.  And we realized something.  Every person, every decision, every moment has a purpose.  And, you have to embrace those moments as they come.

Could I BE any more stylish?

Could I BE any more stylish?

Just when I felt lost, someone new came into my life.  And he showed me that it’s okay to be open and vulnerable.  Then, a small gift was given to me today that reminded me that I do matter.  Then an amazing honor was asked of me tonight that made me realize that I am loved.

So while all of these moments are short lived, they are moments that mold you.  There are people in your life that may only be stopping by for a short time, but they all carry a message.  Can you hear it?  If you listen close enough you’ll realize that things happen for a reason and if you have an open heart, every thing matters.

Carneys & Sciollas at Heart Lake

Carneys & Sciollas at Heart Lake

John John’s life only lasted a little over 11 years.  But of those 9 years that I had with him, he has impacted me and continues to make me the woman I am today.

I am still shy with my heart, but I am learning to give it more freely.

I am still insecure about my decisions, but he’s made me braver and bolder.

I am still hopelessly mushy with those that are close, but he’s made me realize that life is too short to not put your heart out there.

I’ve been so focused on the Why.  Why did he die?  Why didn’t he make it?  Why did I get sick?  Why don’t I feel good every single day?

So instead of focusing on the imaginable loss of this amazing, strong, incredible boy, I need to focus on the WHY NOT?  Why Not put my heart out there? Why Not speak up?  Why Not find a way to honor him?

So, today, on the day that he left the world to a more beautiful, more serene, more wonderful place, I honor him by BEING BRAVE.

I know that he would be so proud of my parents and all they have endured to keep our family together. I know he would be proud of the woman my sister has become, dedicating her life to educating and mentoring children. I know that he would be proud of the men my brothers have become– husbands, fathers, lawyers and cough drop box builders 🙂  I know he would be proud of his friends, and the honorable men they have all grown to be.  I wish he could be here to see it, but I know, with every inch of my being, that’s he’s with all of us, every day.

I promise to keep fighting GBS.  I promise to keep loving with an open heart.  I promise to always get out of bed no matter how hard it may be, physically and emotionally.  And most of all, I promise that I will live my life to the fullest.  Because that’s what he would want. And that’s what John John would do.

IMG_1543I miss you every day, John John, even though you are firmly planted in the depths of my heart and soul.

Thank you for joining me on my journey,

Suz

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One response to this post.

  1. Posted by Fran sutherland on July 31, 2013 at 8:16 AM

    Hey Suzie, how are you???? So good to hear from you. You always inspire me when I read your blogs; yes keep an open heart and let people in. What a beautiful relationship you and John John, love it. Hope you are feeling stronger and had a good summer. Wish we could meet for lunch/dinner sometime, all the Best to you.
    Lots of love, Fran Sutherland

    Reply

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