Far Away

Flighty.

That's me at times.

Last night was no exception.

I was invited by my good friend Donna to attend Dr Oz's posh

Garden of Good and Evil Gala

in NYC.

Though very excited at the possibility of meeting Dr Oz and his beautiful wife, Lisa, I did question which side of the room they were going to seat me, good or evil?

Hmmm?

While contemplating the fundamental dilemma, I found my way to an ornate and beautifully decorated table filled with fruits, chocolates, flowers, and feathers.  In less than two seconds, I had rifled through the table centerpiece and absconded with all the chocolates and effortlessly managed to never even touch the fruit...At this point I’m thinking evil side, right?

The event was fabulous.

Dr Oz was as endearing as one would assume and the wine flowed all night. Credit to the endless flow belongs to my new BFF Barry who cajoled our server into granting us two bottomless wine glasses.

Close to midnight I air-kissed a few new gala buddies “adieu” and heaved the huge goodie bag over my shoulder. Donna plucked a white rose and a white feather from our centerpiece and handed them to me.

“Here, take this” she said.

I was wondering how I was going to squeeze the items into my already overflowing stash. I looked back at her, perplexed.

“For Jena…” she said “her presence is so strong here tonight and I want you to take this to her.”

Now Donna knows how much I abhor going to the cemetery.  I just can’t meld the fact that Jena’s spirit still lives larger than life, yet her physical body is buried 6 feet beneath the earth.  That concept doesn’t gel for me. It never will.

Still, I took the rose and feather and promised to give it to my mother-in-law who religiously “visits” Jena.

I gave Donna a tight hug and kissed and thanked her for such a wonderful and memorable evening.

This morning came way too early and my head was hurting. I speculated Barry’s condition to be the same as I caught a glance at the enormous goodie bag overflowing with treats, lotions and assorted samples of really cool products I would never buy.  Then I see the rose and feather.

Sigh.

Listening to my iPod on low, I get ready for work.  My blackberry buzzes and it’s an email from Donna saying she had a blast last night and that she had Jena on her mind this morning.  The email is very touching and my eyes well up.

Crap.
Now I have to re-do my make-up…again.

I put the phone down, grab a tissue and notice the song playing in the background. It’s Nickelback’s “Far Away”
It’s one of my “Jena songs.”
The lyrics I hear are:

“...Keep breathing 'cause I'm not leaving you anymore
 Believe it
Hold on to me and never let me go...”

I wash my face and realize it’s going to be a “natural” make-up free day...like it or not.

I clutch the rose and the feather, swipe my car keys and take a detour to work, via the cemetery.  I’ve been there twice and both times were for reasons that I couldn’t explain.

Within minutes, I pull into Jena’s cemetery, find her section and shut my car off.  My tears haven’t stopped streaming since reading Donna’s email and they roll faster the closer I get to where “Jena” is.  A few more steps and then I can clearly read her name etched in stone and I lose it completely.

This is why I don’t come here, yet for the third time in 3 years, here I stand not knowing why.

I look around and see “gifts” all around her tombstone.  I see pennies, cards, and bubbles.  I see remnants from the Junior Prom.  Mike and the Milton Girls must have stopped by to make sure Jena was a part of their evening.  They certainly are very special friends who'll never forget to include Jena in their lives and I love them for that.

I sit on the grass, in my suit, and I am just about to place the rose and feather among the other gifts when I am startled by my car radio that suddenly starts blaring.

I’ll give you one guess as to what song is playing….
...and one guess what the lyrics are.

“Keep breathing 'cause I'm not leaving you anymore
 Believe it
Hold on to me and never let me go”

I look up at the bright blue sky as see a bird fly above me.
I’m laughing and I’m crying.
I’m still holding the rose and feather and I start talking, out loud, to Jena

“Hey there Baby Girl, I’ll keep breathing as long as you never let me go, okay?”

I'm Back

I’m back...ya miss me?

Last we left I was under a bit of stress more than I can or should explain.

Suffice it to say I burnt my candle on both ends until I basically was left with nothing but a sad excuse of a stubby wick.  Go ahead and giggle...it’s good for the soul.

Candle extinguished, emotionally drained, I was physically left susceptible to any germ-du-jour that came floating by.  I became the host of a week-long cold that was something out of a really bad NyQuil commercial.  I was so busy sniffling, sneezing, coughing, aching, sleeping for 6 days straight, I totally missed that fact that spring arrived.

The sun is out.
The buds are blooming.
It’s absolutely gorgeous outside.

I have been forced to learn along life's journey to trust Mother Nature and all her glory.  She continually proves to me that life moves on.  Winter will leave and the beauty of spring is guaranteed to arrive.  I get that now.  Change comes whether you’re ready or not.

So while I was trying so hard to conquer my world, my way; the world ever so shrewdly reminded me to s-l-o-w down and accept what is.

Someone once asked me, “Are you a good friend to yourself?”

My first reaction was, “Duh? That’s a stupid question.”
Then I realized it was a good question and I was a bad friend. I demand way more from myself than I would ever even ask from a friend.  I actually take pride in the fact I do that.   I am more like that Marine Sergeant from Officer and a Gentleman

 who pushes you to the limits of what you are able to do.
(Those of you under 35 may need to Google my reference)

Some friend I am.  I pushed myself emotionally, mentally, and now physically to the breaking point.

My body gave up and left me to battle my emotions, my inner turmoil and now the aches and pains of a nasty head cold with just tissues to ease the blow. (pun intended)

Once again I found myself looking out my bedroom window, not able to lift my head off the pillow, watching spring come to life.

By the time my head cleared, in more ways than one, I found my reset button.

 
I am looking forward to life’s adventure knowing nature’s got my back.  It’s okay to let some stuff slide, to not always know the game plan and to trust my instincts.  I look outside and see the sun shining brightly on Jena’s rose garden.

I smile and blow a kiss up to Heaven.

I grab my sneakers and decide to take a long run outside in the fresh air.  Don't get me wrong, I still need to conquer the world but I think I’ll stop and take the sights in along the way.

I can still do it all.

I am woman, hear me roar.

Headed for a breakdown

Headed for a breakdown.

That’s really never good.

You see, I have one week left to make Jena’s wish come true and I just don’t know how I’m going to do that.  Since she was a little girl, Jena was confident that there would be a cure for CF by the time she was 16.

On March 13, 2010 at 11:02pm, she would have turned 17.

17.

That’s after 16.

Time ran out.

Again.

Breakdown time.

I just don’t know if I can live with letting her down again.  I couldn’t save her from the disease that took her life.  I couldn’t leave this earth with her either. And now I can’t make CF stand for Cure Found no matter how hard I try.

Her brother still fights daily to breathe and still there is no cure. Sometimes I think all the CF fund raising I do, and all the public speaking I do at CF events, and all the damn CF awareness I do is just in vain.

The researchers discovered the gene back in 1989.  In 1991 when Eric was diagnosed, the doctors told me, “Just give us 10 years and CF will be a thing of the past.”  Ha!  I gave them way more and CF still smoldered the flame of one of God’s most magnificent lights.

I’m a failure as her mother.

These are the really bad days associated with living after losing a child, a part of you, a reason for being.  I can’t get my head off the pillow.  I can’t stop crying.  I can’t think of anything positive and I have no anecdote for the pain I'm feeling right now.

Her birthday is next week and I don’t want to be anywhere near home.  Her girlfriends will most likely drive themselves to her cemetery and sing her happy birthday and probably bring her balloons.  They’ll laugh and cry and think about their special friend that changed them forever.

Our local church will have a beautiful mass said for her that day.  Our family and friends will gather together and pray for her soul. Their hearts will be filled with love and sorrow.

Me?

I want to do something Jena-special.  I want to do something she would think was cool. I want to do something that has purpose, meaning, and is full of love because that is where she is.

God gave me a moment’s grace and sent me an email:

Save the Date ShamRockin, March 13th

  http://www.shamrockinforacure.com/

Dear Friends, Clients, and those of you around town I know like a good party and a good cause,

I am a member of the Planning Committee for Shamrockin’ For A Cure 2010 – a huge party at Verizon Wireless Amphitheater coming up this March in Atlanta.  For the cost of a night out you get dinner, drinks, live entertainment and the knowledge that you are contributing to the Cystic Fibrosis Foundation...  

Save the date? Yeah, I think I can do that.

Drink? Hell yeah!

The emotional cost though is too high.

Still, Marc and I will be flying to Atlanta to be with wonderful friends that care so much, to do whatever they can, to make a difference in the lives of those battling cystic fibrosis.  They have no other reason to be involved other than that their hearts were touched by our family and they wanted us to know that Jena’s life, Eric’s life, and my constant fight against CF is not in vain.  

Call it coincidence, but I have long given up on that…I call it God’s grace intervening yet again.

I’m a mess, that’s nothing new.  I cry, I breakdown, I curse that I’m still alive.  Then I think of how hard Jena fought for each breath and how she smiled in extraordinary circumstances.

So where will I be at 11:02pm on Saturday, March 13, 2010?

In Atlanta, laughing with amazing friends, sharing a few tears, raising funds and awareness for CF but most of all, I’ll be toasting one of God’s greatest angels, my beautiful daughter…

Jena Marie Cassalina

“Happy Birthday, baby girl. 

I love you more than words can say…
I love you more and more each day.”

Xoxoxo
Mommy

Move

It seems the older I get, the harder it is to move. When did that happen?

Even at 41, I know that if I don’t m-o-v-e, my body gets stiff, my energy lessens, and my mind eventually follows suit. It’s not long before I find myself plopped on the couch still in my PJs, watching some reality show, inhaling a half gallon of Ben & Jerry’s Cherry Garcia ice cream.

The problem is the longer I sit, the harder it is to move. It gets to the point that moving will hurt. My back aches, my head is in a sugar fog and the energy I used to thrive on has become depleted from yelling at pathetic women on TV who are in desperation to receive a rose…

Yet there I sit.

Inertia at it's best.

Sometimes I don’t want to move forward because that means I have to face where it is that I am. I have to face that what I had is gone. I have to find a new way to be.

For me, the hardest most painful time to move forward was after losing Jena. I didn’t want to do anything and moving forward was not an option.  Moving forward was just too painful because I knew my future did not contain Jena. She resides in the past, in memories...or so I thought. I chose to just numbingly stay lost.

Moving forward after losing a child is almost next to impossible. Time moved on whether I wanted it to or not. Winter passed, spring had arrived and I was still unable to move. Moving hurt.

What I had forgotten was that I had always loved life. I loved showing the world and all its wonder to my kids, I loved to laugh, I loved to be active, and I had raised my kids to know that life is certainly worth living. I just forgot.

It was months before I noticed that spring had arrived. From my bedroom window I could see life come back in to nature and that time mercifully moves forward.

It’s never easy to take that first step. I don’t care if it’s getting off the couch and going for a run or putting the bottle down and choosing to get back into life. That first step is always a choice and is rarely easy to do.

Right now it’d be easier to sit here, take an Advil for my backache, and stay in bed eating comfort food that makes me feel momentarily good. But that’s just not me.

Life is just too spectacular to waste on the sidelines; you have to be in the game to feel the victory.

Sometimes moving hurts but in the long run it’s the NOT moving that’s the most painful. I know Jena is with me always in laughter and in tears and I also know she would so kick my ass for wasting a single breath.

Time to choose.

Time to move.

Time to put down the remote, chuck the ice cream and grab your sneakers....and come meet me at the amazing race called: life.

,

L-O-V-E

Of course I’m going to talk about LOVE…it’s Valentine’s Day for crying out loud.

Until it is replaced by Ground Hog Day bears and Arbor Day cards, Hallmark’s annual revenue will continue to be subsidized by Valentine’s Day paraphernalia followed closely by Mother’s Day plaques, flowers and trinkets.

February 14th is the day that is jammed down everyone’s throat to express their love.

Gag.

Don’t you know that every kiss begins with a jewelry store and the only way your love is measured is by how high the price tag is?

In my opinion, the only way love is measured, or is tangible, is by your children.  They are the embodiment of your heart, with little arms and legs attached, asking for money and the keys to your car. Yup, those little buggers can drive you nuts and melt your heart in an instant.

I can remember the exact date and time when I fully understood what true love meant.

It was 1:13pm.

 …on Wednesday, Nov 29, 2006

 …at Westchester Medical Center

…in the ER

That was when I was told that my daughter’s lungs had collapsed and they could not fix them.

(Excerpt from Beyond Breathing)

Dr. Smarty-Pants told me that if they didn’t intubate Jena—meaning, put her on a ventilator to help her breathe, to help her exchange the oxygen—she would crash, and there would be nothing they could do to save her.

 Once she was intubated, she would be unconscious. The only way we’d talk to her again would be after her double lung transplant, which would take place 500 miles away in Pittsburgh, Pennsylvania. As yet, there was no donor and we were still in New York.

Dr. Smarty-Pants gave me ten minutes.

Ten minutes.

That’s all I get to tell Jena everything in my heart. To tell her how much joy she’s brought me. To tell her how much I love her.

I had ten minutes.

I told her all those things. I told her that if I could be just a fraction of the person she was, I would be the most incredible person ever. I told her that if I could bring half of the smiles and laughter she did I would be honored to stand in her shadow the rest of my life. I cried. I couldn’t stop crying.

As the tears relentlessly streamed down my face, I apologized for any and every fight we ever had. I apologized for any time she was mad at me or I was mad at her. I told her again and again how much I loved her, how proud I was of her, and how much she’d taught me that I would never be able to repay. I cried. I was shaking. I was terrified. I couldn’t believe I was doing this, I couldn’t believe that I had to.

Try to breathe.

She was wearing a bipap machine that covered her nose and mouth to help her breathe, but she was alert and awake and could talk to me. Jena, like a mother compassionately caring for her child, looked at me and gently shook her head left and right and slowly gave me the most remarkably tender smile. Her eyes looked so deeply into my eyes, like never before. It felt as though she was reaching into my soul with her eyes, and I could feel it. I looked back at her with my bloodshot eyes, sniffling, and my hands shaking in hers.

Jena just said, “Mommy, I love you.”

There were no tears in her eyes, and there was no fear, either; no screaming, no asking why her. Jena in her infinite wisdom knew that love is the greatest of all. All this chaos was inconsequential. Love is what is immortal. Her love for me and mine for her were untouchable. Jena knew love is the only answer. Now I know that, too.

(end)

That is what love is.  It is untouchable, unbreakable, and it transcends into the hereafter.

Love never ends.

And that is priceless.

I can hear you saying, “I get what you mean, but I like the chocolates, the diamond heart-shaped necklaces, and the candlelight dinner out.”  Listen, by all means take advantage of a perfectly executed marketing campaign, I certainly do.  I’ll be the first to say, “Just hand over the chocolate and no one gets hurt."


But do me a favor this Valentine's Day.  Go find that special someone, stop them dead in their tracks, and look deeply into their eyes and say, “I Love You” and mean it.  Then tell me that’s not worth your weight in gold.

Now go share the love.