Look Up.

Do I really have 194 friends? Can someone even be called "friend" if the only interaction I have with them is through my computer? Can life be lived without social networking?

Truth?  

I don't have 194 friends. I don't even truly know that many people. But I have 194 people who, for whatever reason, want to know what I have to say on Facebook.

Can someone I've never met in person, and who I only interact with online, be called a friend? Absolutely yes. I know people in just this way who have been more supportive than people I was born and raised with.

Can life be lived without social networking? Well, I am about to try. Starting Saturday, May 10th, I'm shutting down my social networking accounts. Instead of looking at my iPad every evening, I'm going to look at my family. Or maybe the television. But I'll do it with my family.

This should be interesting.

A Day in the Life . . . as it should have been

For a few months now I have been thinking about what Keeghan's 18th birthday would have been like had cancer never entered our lives.  I'm sure some would think it is unhealthy to spend so much time imagining something that will never happen, but in many ways it gave me comfort.  After a while I decided to write it down because, well, that's just what I do.

A day in the life of a boy turning 18, as it should have been.

March 7, 2014

6:00am

The alarm went off, but he ignored it.

As usual.

6:15am

His mom sticks her head in his door.  “Keeghan! It’s time to wake up Bubby!”

“Five more minutes?” he asked.

It was a game they’d been playing since he was little.  Keeghan never was much of a morning person.  He grew up hearing stories about how he would sleep through Mom dressing him for daycare, how grumpy he was until he’d had his first cup of coffee and cereal (his breakfast of choice since middle school).  Not much had changed.  He still didn’t like mornings, but today was different.  Today was his birthday!

18-years-old.  

Yes!

So many things rushed through his mind as he enjoyed his five-minute-snooze.  18-years-old...an adult!  He’d be graduating high school soon, headed off to U.C. San Diego to study marine biology, a dream he’d had since he was five and watched a show about sharks.  He’d told his mom then that he would study sharks and their resistance to cancer so that someday he could find a cure.  Part of that dream would be coming true soon.

Eighteen also meant he could vote now.  Look out GOP because another Liberal has hit the age of majority!  

“Time’s up Bub - you’re going to be late if you don’t get up!”

“Ok mama.”

It was going to be a good day.  It was a Friday, which meant he and Marissa - his girlfriend of the past two years - would be going out somewhere tonight, but it would have to wait until after his birthday dinner with his parents.

As he came from the shower, he heard his cell phone ringing.  Digging in his backpack for the phone that was buried under 20 lbs of books, he got it just before it went to voicemail.

“Hello?”

“Hippo Bird Day Two Ewes!  Hippo Bird Day Two Ewes . . .”

The singing continued on as he rolled his eyes and held the phone away from his ear.  “Do you have to yell?” he asked, but with a smile in his voice.  It was his older sister, Mackenzie, calling from San Francisco where she was an art student at San Francisco State.

“It’s a BEAUTIFUL morning, isn’t it Keeghan?”

“Do you know how annoying it is that you’re always so happy in the morning?”

“You miss me.  Admit it.”

“No Mackenzie.  I don’t.”

“You do.  You know you do.  Love you.”

“Love you too.  Dork.”  He laughed in spite of his annoyance with his crazy sister.  “Are you going to make it for dinner tonight?”

“Of course.  I’m flying in this afternoon.  Dad is picking me up at the airport.  Are we kicking off Birthday Week at the Melting Pot?”

“Duh.  Where else.”

Keeghan was born four days before Mackenzie’s 2nd birthday.  She couldn’t understand when his first birthday came around why he was getting presents before her when she was older.  Instead of trying to explain how the calendar works to a 3-year-old, Birthday Week was born.  It kicked off on March 7th, Keeghan’s birthday, and ended on Mackenzie’s birthday, March 11th.  Part of the Birthday Week tradition was that they each got to choose where dinner would be on their special day.  Keeghan’s had been the Melting Pot since he was 10.  

“You’re so predictable!  Well, have a good day at school and I will see you tonight!  Love you Bubby!”

“Love you more.”

“No, you don’t.  It’s the same.”

“And it’s a whole lot.“

Mackenzie had always been his best friend.  Through all of their moves growing up, going where the Air Force sent Dad, they’d always had each other.  But as much as he loved her, she was a bit much before coffee in the morning!

Speaking of coffee . . . he stumbled toward the kitchen, eyes still only half open, following the smells.  Bacon, eggs, and yes!  COFFEE!  As he walked into the kitchen, there was Dad at the stove, making breakfast.  “Here you go mister, drink up.”  Mom handed him a big mug of good-morning-sunshine, made just the way he liked it - one Irish creamer, one regular creamer.

Before he could even take a sip, Dad pulled him into a big hug.  “Happy birthday Pal.  I love you.”

“I love you too Dad.”

One thing The Fantastic Four - the family’s nickname - had always been good for is letting you know that you were loved.  

School went pretty much the way most days did, cruising through class and break times.  Keeghan wasn’t necessarily popular per se.  He didn’t play sports, yet he was friends with all the jocks.  He was friends with everyone really.  It would have been a day like any other if it weren’t for the fact that Marissa had sent him balloons in his first period class.  So as he walked through the halls carrying them (because he didn’t want to hurt her feelings by shoving them in his locker), people high-fived him and wished him a happy birthday.  

When he finally saw Marissa at lunch, he hugged her close and then said, “Seriously?  Balloons?  Did you have to?”

“Of course I did silly.  Happy birthday.” He was embarrassed over the balloons, but loved the attention.  

By the time he made it home from school, Mackenzie was already there working on making his birthday cake - carrot cake with cream cheese icing.  Again, the usual.

“Someday I’m going to make you a chocolate cake with strawberry icing.”

“I won’t like it,” he replied.

“You know Keeghan, sometimes straying from the norm is a good thing.  You should try it sometime.”

“Whatever.”

It had been a running joke between them for years.  Mackenzie liked trying something new every year for Birthday Week - new restaurant, new type of cake.  Keeghan loved keeping everything the same.  It was his own little “tradition.”

In keeping with another of Keeghan’s favorite traditions, dinner went as expected - snarky banter in the car on the way there, constant chatter throughout dinner, loads of laughter - just the way he liked it.  As he looked around the table at the people he loved, he realized exactly how lucky he was.  Adulthood was going to bring so many changes - college, career, hopefully a family someday - all the things he had planned for his entire childhood.  But the foundation of it all was the family who loved him, and who he loved in return.  

It was good to be 18.

*************************************************************************************

Except . . . it wasn’t.

It would have been great.  It would have been amazing if Keeghan had experienced this 18th birthday.  But he didn’t.  He never had a girlfriend named Marissa.  She was the girl in his 4th grade class that he had a crush on when he was diagnosed with cancer.  He never went to high school.  His last birthday dinner at The Melting Pot was when he turned 12. Instead of making a big birthday breakfast for him today, we will write letters to him on helium balloons and release them into the universe, hoping our messages reach him.  

We still celebrate the day, because his life is still such a blessing to us, but the laughter and tears will be less . . . everything.  Laughter over good memories, tears over what will never be.  This is how we kick off Birthday Week now.

But oh how I wish this story were the reality.

I miss you Bubby.

The Biggest Loser in the Social War

Always look at the bright side, eh?

Ok . . . so this is me, looking at the bright side of getting up at 5:00am to color my hair.  Since I gave up using chemical dyes and switched to all-natural henna to color my hair, I’ve decided that I would rather sacrifice sleep and get up early so I can leave the henna on my hair for three hours without losing half my day off because I have a head full of mud.

But oh how nice sleep would be right now.

Oh well.  Since I’m up, I might as well do a little writing - something I haven’t been doing enough of lately.

Today is my dad’s 79th birthday.  The importance of this is that his own father died at 78.  I think that is a major feat, don’t you?  My mother and father are still alive, as are my husband’s mother and father, so I don’t know yet what it is like to lose a parent.  But having watched others I know experience this loss, I think a common theme - or maybe a better word is a common goal - is to live past the age our parents lived to be.  As if somehow the age a parent died is this wall that we all must reach and then climb over.  The beauty of my dad turning 79 today is that my “wall” is still in motion, still moving further away from me.  I can still live my life without thinking that every day puts me “one day closer to [insert age here].”

Kind of a selfish way to look at it I guess.  But an honest one.  Because aren’t we all a little selfish?  The world does revolve around me, doesn’t it?

Since I started working a few months ago, I have taken a break from my online world.  Social media, blogging, and emailing have become something I do on the weekends, and then only if there is absolutely nothing else to do.  Before I started working I found the “look at me, look at me” attitude of many people online to be slightly annoying.  Now?  It’s unbearable.  And yet, there are an equal number who aren’t constantly trying to be The Most Popular, The Funniest, or The Most Needy person on [insert social media site here], but are just saying, “Hi, how are ya?”  They are the gems of the world!  The ones who can write a post that isn’t cryptic, isn’t begging for praise, isn’t inflicting guilt . . . those are the people I now appreciate so much more than I used to.  Those are the people I aspire to be!

Of course, I understand that some people don’t have anyone to talk to outside of their online social world.  Some people need the constant reassurance that only 57 “likes” and 23 comments can give.  Some people are only happy if they are letting you know that they have it so much worse than you do.  There are wars going on all around the world that people should be following, should be caring about, and yet I can get online at any moment and witness the collective hours put in every day on a different kind of war.

My child had cancer!

Yeah?  Well, my child HAS cancer still.

My child died from cancer at age 17.

My child died at 12.

MINE died at 1!!!

I use cancer as the example here because that is the world that I am a part of.  But the same war goes on in other circles as well.  Who had the worst marriage, the worst commute to work, the worst hair day.  Whose weather is the worst today.  It’s all a game of who has it worse than someone else.

So who wins?  Because that is how it seems, that there is a winner somewhere in all of this.  Who wins at having the most tragic life?  

I want to be the loser.  I want to be the person whose life is so pleasant, so easy, so ordinary, that I become the biggest loser in The Social War.  I want to look at the challenges I have faced, the losses I have experienced, the bad days that we all occasionally have and see the bright side.  I wasn’t able to do that a few months ago.  I was caught up in the war as well, competing for the prize.  It’s amazing how much perspective can be gained just by taking time off and enjoying the good things in life though.

Who knew?

9/11 - Looking Back on the Day That Changed Everything

Since everyone else is doing it . . . here I go with what I remember about 9/11/01.

I was on my computer, ordering beads. The woman I ordered from sent me an email right after I submitted my order. All it said was, "Are you watching TV?"

I found that to be an odd question. I never watch television during the day, but because she asked, I thought I should turn it on. As I headed toward the living room, the phone rang. I answered to find that it was a friend of ours from Germany. JD immediately asked the same question my bead lady had.

"Are you watching TV?"

So I walked into the living room, sad down on the coffee table facing the television, and turned it on. The first thing I saw as I flipped to CNN was the second plane hitting the tower. Live. As it happened. I don't remember saying anything more to JD. I don't remember if I hung up or if he did. After a while, my bead lady (whose name I cannot remember for some reason) called me. We had never spoke on the phone before, only communicating via email. But that day we talked on the phone and watched CNN together for over two hours.

At some point I called my husband, Mike, at work. We had just moved from North Dakota to North Carolina about six weeks earlier, so he had only been a part of this squadron for a short time. Prior to moving there, Mike had been in Korea for a year. So we were enjoying something of a "honeymoon period" after spending a year apart. But I knew by the tone of his voice as he got on the phone that day that the honeymoon was over. He had his Captain Hat on as he spoke, telling me that yes, he knew what had happened, and no, he didn't know how that would affect him or his new job.

I went to the school down the street to pick my children up at the end of the school day. None of the parents waiting outside the school spoke much as we waited for the final bell to ring. As my children - Mackenzie, age 7 and Keeghan, age 5 - came out, all I wanted to do was hold them tight. They both knew something had happened because they saw their teachers crying. I think I tried to explain as best I could what had happened, trying not to scare them too much. 

Mike didn't get home until late that evening, and then he was home only to eat and change into a clean uniform as he had night shift in the command post that night due to the new, heightened alert status the whole country was at. I know we talked a little that night, but I don't remember what about. As earlier, his Captain Hat was on and he was thinking of nothing but the job at hand.

Life changed drastically in the days and weeks that followed. Fear was a constant. Mike deployed a month after the attack. The kids and I were, once again, on our own. That was the first of what has now been 5 deployments for Mike. All because of the events of that one day, 12 years ago.

Grumpy

I find myself very angry and annoyed lately.  I didn’t really think it was all that noticeable though, at least not until a good friend asked me yesterday why I was so grumpy.  I should be feeling better, right?  August is over.  I made it through the 5-year anniversary of Keeghan’s death and it is finally, gloriously, September.

Enter Childhood Cancer Awareness Month, stage left.

At first I thought it was very ironic that Keeghan died on the eve of Childhood Cancer Awareness Month, almost as if he was saying, “Keep on fighting Mama.”  It was fitting.  But now?  It’s like back-to-back hell months.  I just about get through my own personal hell and now I am inundated with everyone else’s hell story, and honestly, I’m just not in the mood for it this year.

That sounds pretty shallow, doesn’t it?  I’m not in the mood.  As if any of those other people sharing their story were in the mood for what happened to them.  But there really is no other way to put it.  My head isn’t in the right place.  For the ones telling their story about how their child was diagnosed with cancer, went through treatment, and is now alive but with side effects from chemo . . . well, good for you.  Your child is ALIVE.  Yes, with definite sucktastic deficits to deal with because of the harshness of chemo, radiation, or both.  But alive.

My anger over this is a little off the chart this year.  I recognize that it is wrong.  I recognize that it isn’t fair to my friends whose children have survived to feel this way.  I recognize that I am being selfish.  It doesn’t change my resentment though.  Of my closest friends in the childhood cancer world, I am the only one whose child is dead.  I don’t wish for any of them to join me in that fact, but sometimes it is tough being the only one.

So yeah . . . I guess I am grumpy.  Right or wrong, I’ll own up to it.  I won’t apologize though.

Can't Turn the White House Gold? Then Do Something Else.

Turn the White House Gold for the month of September.

I signed the petition.  I thought it sounded like a cool idea.

In theory.

I, like so many of my fellow parents of children with cancer, received an email yesterday saying that the White House would not be turned gold for the month of September, but that the President would be proclaiming the month officially as Childhood Cancer Awareness Month.  I wasn’t really surprised by this.  Disappointed maybe, but not surprised.

The absolute outrage that I have seen on Facebook over it baffles me though.  I am obviously in the minority in terms of not being all that surprised or upset.  I was talking to my husband about it this morning.

By the way, for the record, today - as I sit writing about turning the White House gold - we are marking the 5th anniversary of our son’s death from cancer.  Needless to say, spreading awareness is very important to me.

So as my husband and I were talking, I really started thinking about what it would take to turn the White House gold.  

Numerous light bulbs to start, and if you know of a place that sells gold ones - and I mean truly gold, not yellow - I’d love to know where it is, because yellow light bulbs would just look like the White House had a bug problem that they were trying to fix.

Once they had the light bulbs, then there is the staff requirement to change them all (how many White House staff members does it take to change every light bulb . . .).

Most importantly, how much money would it take to do all of that?

A ha!  There’s the real problem!

Our government is broke.  We all know that they’ve cut funding for cancer research, yet you think they have the money to buy light bulbs?  And if they did have that kind of money, wouldn’t you rather it was given for research rather than . . . light bulbs???

Let’s face it, the real beef here isn’t even that they said no.  Admit it - it’s the fact that they (apparently) turn the White House PINK in October for Breast Cancer Awareness Month that bites everyone in the arse.  

But I bet they already have all the pink light bulbs they need, so no additional money is required.

Seriously people, I hate to say “get over it” but really . . . get over it.  A door has been closed in your face, so change paths.  You want the White House gold?  Instead of signing a petition, send them light bulbs.  If every cancer parent in the country sends a couple of light bulbs, I’d be willing to bet they’d have enough.

And then some.

Or, better yet, don’t copy the “turn the White House pink” bit and create a new one.  Instead of sending light bulbs, send gold ribbons that say something about childhood cancer awareness to tie around every tree on the White House grounds.  Inundate them with gold to decorate the White House.

Figure out something new.  But for the love of everything holy in the universe, stop whining about it and try to look outside your own little box.

K?

August Rambling

Ramble time.

August is a horrible month for me.  We started off August 2008 with high hopes.  Keeghan, our 12-year-old son, was starting a new drug trial for the treatment of his relapsed brain tumor.  We knew we were grasping at straws, but still . . . the hope was there.

By mid-August he was on hospice care.  On August 31st he died.

I hate August.  August is a month of extreme anger for me.

After Keeghan’s death, I got involved in a few different fundraisers for childhood cancer research.  In the first three years after he died, I was very involved.  Through all of this involvement, I met many other parents of children with cancer, and through Facebook have stayed in touch with some of them.  They keep me “in the know” on what is going on in the childhood cancer world, whether I care to know or not.  

It’s been five years now though and my fire for fundraising, for getting out there and waving my flag is just . . . extinguished.  I need a break from everyone.  I don’t feel social this month.  I need a break for so many reasons, some of which are not things I think most people would understand or want to hear.  

So to save my 217 friends on Facebook from my anger, I decided to deactivate my account for the month of August.  I even made an announcement at the end of July to let them all know what I was doing.  Apparently that wasn’t enough though, because people just had to know what I was doing.

After finding out from a friend that people were worried, I reactivated my account to let everyone know what the deal was.  And immediately I was inundated with everything I was trying to avoid this month.  People who, frankly, just piss me off.

The people whose greatest challenge in life is dealing with traffic to get to work every day.

The mother with healthy children who can do nothing but whine about her lot in life.

The mother whose child died and who now uses Facebook as her own big pity party, posting pictures of her child constantly so that people will continue to tell her how sorry they are for her.

The people who think posting pictures of children looking sick, or worse, dead children, is a great way to spread awareness.

The parents whose children are cancer survivors - so far - and now spend all of their time on the Advocacy Soapbox because they still have hope.

F*#& that.  I will not use Keeghan to get people to feel sorry for me.  Don’t feel sorry for me; feel sorry for my son who only got to live to be 12.  

I will not use pictures of him as he was dying to scare people into awareness.  

I will not lie and pretend to have hope anymore.  Sure, I have high hopes for the children who are survivors because I don’t want any more children to die, but I cannot pretend that I have hope for me anymore.  No new treatment or cure can give me what I want most.

Which brings me to my recent epiphany.  I’ve been dreading this five-year anniversary of Keeghan’s death for a long time now.  Five years.  In the cancer world, you pray to make it to five years cancer free.  That magic “cure” time.  Not all cancers are considered cured at five years, but it’s still a major goal to reach.  No one prays to reach the five-year anniversary of a death though.  

But in a way, I feel like I have been looking forward to this one.  Laying in bed one morning this month, after waking (once again) from a dream of Keeghan, it hit me.  Why this anniversary is so big.  Subconsciously, the thought is there that I’ve finally made it to five years and, against all odds, my marriage is still intact, my daughter is still alive and well, and I am still reasonably sane (depending on your perspective).

I’ve passed the test.  I’ve done it.

So now give him back.

I’ve proven I could do it, even though I never though I could.  I never wanted to.  But I did it.  I gave him up, watched him die, and survived.

So can the test end now?  Can I please just have him back?

That is what I’ve spent this month thinking.  No matter how much logic I throw at myself, no matter how much reality I face, the bottom line is that I want him back.

No one on Facebook can help me with this.  I don’t need a bunch of people saying, “I’m so sorry hon!” or “big hugs” or just posting hearts in response.  I’m not looking for support.  The fact that so many people care is nice, but it doesn’t help.  Not this month.  Because there is no one who knows how I feel.  

I have friends who have also lost a child, but they still do not know how I feel because they’re not Shannon, and they didn’t lose Keeghan.  Only I know how that feels, just as Mike is the only one who knows how MIKE feels having lost Keeghan.  Same goes for Mackenzie.  

You.  Do.  Not.  Know.

Which leads me to one more reason for deactivating Facebook.  We call all of the people we know on Facebook friends, but are they?  For me the answer to that is “no.”  Here is how my Facebook “friends” are divided:

• People I have known at some point in my life but never kept in touch with before Facebook
• People I’ve never met but know through old blog sites
• Military acquaintances from past places we have lived
• Cancer world 
• Family members
• Real friends

Now, some people fall into more than one category.  True friends that I’ve never met in person.  People from the cancer and military worlds who I am now closer to than I am to my own family.  And then there are the people who I met through cancer, but are also military families and people I consider true friends.  The “gray friend” because they don’t fall into one black-and-white category.

The problem comes from the people who are not “friends” - not in the true sense of the word (talking pre-Facebook definitions now) - but who think they are because we’ve met once and they have a child who had cancer, and so did I and now they feel they have the right to know what I am doing at all times.

Again, f*#& that.  

I’m just trying to keep it real.  I care about a lot of people, but if they disappear from Facebook, it isn’t my place to try to get in their business and find out why.  Facebook “friendship” is not real friendship.  It’s a virtual backyard social at best.  Fun at times, and at others a total train wreck.  

So if I want to turn it off for a while, let me.  That’s really all I ask.