Saturday, August 31, 2013

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.


Friday, August 23, 2013

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.

Wednesday, August 14, 2013

I never meant to be a stay-at-home mom.

I never set out to be a stay at home mom.  In all honesty, I never thought I’d be anything more than a secretary, but I at least thought I would always have a job.  After partying my way through my freshman year in college, my mother told me that she and my dad weren’t sending me back for a second year.  

“A girl doesn’t need a college degree anyway.”

So at 19 I began working as a secretary and that was that.  But after five years of working in clerical jobs - secretary for a pompous old insurance broker, receptionist for a group of psychiatrists, billing clerk for a property management company - I needed to find something else.  

I had briefly dated a guy who was in the Army.  After a weekend spent at the base where he was stationed, I thought, “Wow, this military life doesn’t seem so bad.”  After a particularly boring morning working as an accounts payable clerk, I paid a visit to an Army recruiter on my lunch break.  Of course he made the Army sound like the bomb diggity.

Three weeks later I was on a plane for basic training.  I had chosen to train to be a psychiatric specialist, thinking that it was something I could also do as a civilian when I got out of the Army.  There were a few other . . . unforeseen challenges let’s say, that I had not considered.  The first was that working on a psych ward, while being far removed from secretarial work, wasn’t exactly more fun.  More exciting at times, sure.  But putting a patient in four-point restraints does not really equate to “fun.”

The second challenge that came to define my time in the Army was an injury obtained in basic training that, in the end, not only made it impossible for me to stay in the Army because I could no longer run, but also made me a disabled vet for life.  

I met my husband, Mike, while I was in the Army.  He got out of the military a year after we got married and immediately started college.  I worked - as a secretary, of course - while he was in school.  After graduation, he received a commission in the U.S. Air Force.  When we moved to his first Air Force assignment, I planned to get a job.

You guessed it - as a secretary.  I was 31-years-old by this time and my greatest skill was my 85-wpm typing speed.  But Mike saw things differently.  He told me that it was now my turn to go to school.  

“I am not smart enough to finish a college degree.”   I truly believed that.  After nearly failing out of college as an 18-year-old, how could I possibly finish a degree in my thirties, especially with two preschool-aged children to take care of?

But start school I did.  My initial goal was to get an associate’s degree.  I figured I could probably handle that.  The first few classes I took were basic computer courses that I breezed through fairly easily, which got me thinking maybe I really could finish a bachelor’s degree.  After a year of easy A’s, and a lot of encouragement from my husband, I made the leap and entered into a human resource bachelor’s degree program.

It was around that same time that I started having problems again with the service-connected foot injury and was bumped up to 30% disabled with the VA.  As such I was eligible to apply for the VA’s Vocational Rehabilitation program.  I took all of the aptitude tests they required, met with a counselor who determined that I was, in fact, capable of completing college.  The whole process was a bit comical to me because I already was attending college full-time, maintaining a 4.0 GPA.  When the final decision was made to accept me into Voc Rehab, which meant that the VA would start paying for my tuition and books, as well as pay me a monthly subsistence while I was in school, I was told that they wanted me to get a computer degree because that was where I had scored highest on their aptitude tests.  The problem was that I didn’t want a computer degree.  I wanted, and had already started, a human resources degree.  So the gentleman I met with at the VA Regional Office told me that they would agree to pay for my HR degree if I would agree to also get a computer degree.

“So you’re saying that you’d rather pay for me to get TWO degrees instead of just the one HR degree?”

The answer was yes.  I was in shock.  Just a little over a year earlier I had been convinced that I wasn’t smart enough to finish anything beyond an associate’s degree and now I was going to take on a double major.

What had I got myself into?

But I tackled it with no small amount of cockiness.  Every new “A” I received convinced me even more that I truly was smart.  I was capable. I was relevant.  I was so much more than just a secretary.  

For the next year, going to college was my job, and I excelled at it.  But as I approached my last year of school, I realized that we would have to leave North Dakota, where we were stationed at the time, and move on to Mike’s next Air Force assignment a full year before I was to graduate.  There was no guarantee that the next base we went to would have a local school offering the same two degree programs.  It was a hard decision to make, but Mike chose to volunteer for an assignment in Korea.  It was a one-year unaccompanied tour, which meant the kids - now aged 4 and 6 - and I would stay in North Dakota for the year that he was overseas.  It allowed me that extra year I needed to finish my degrees.  I wasn’t happy about the separation; none of us were.  But I loved my husband so much for being willing to make that sacrifice for me.

In July 2001 I finished college, graduating summa cum laude with a 3.94 GPA.  I’d done it!  A week after I finished my last class, Mike returned from Korea, we packed up and moved from North Dakota to North Carolina.  I was going to get the kids started in school and then I was going to go out and find my career.  

I was ready, and I was excited.

Less than six weeks after Mike signed into his new unit two planes flew into the World Trade Center towers, while another hit the Pentagon and a fourth crashed in a field in Pennsylvania.  All plans for a career were destroyed.   Mike deployed a month later.  He would deploy two more times in the three years we were in North Carolina.  As much as I wanted a career, being home for my kids after school, giving them that one guaranteed point of stability, was more important.  

Looking back, life seemed to suddenly shoot into fast-forward after 9/11.  Mike deployed three times in three years.  He was gone so much, our son Keeghan asked one day, “Why doesn’t Daddy want to be with me?”

In 2004 we (blessedly) left North Carolina and headed to Texas where Mike had been accepted into a two-year master’s degree program.  No deployments for two years!  We were thrilled!  As soon as the kids started school, I applied for a job with a large insurance company in San Antonio and was almost immediately hired.  I wasn’t going to be working in the human resources department as I would have liked, but at least it was a foot in the door with a good company.  It would give me some much-needed work experience to support my education (I hadn’t worked since 1999 when I quit working as a secretary to focus on school).  

Again with the life-in-fast-forward.  I worked for a year and a half, quitting when we were a few weeks out from moving to our next assignment in Washington, DC.  A month after I quit working, Keeghan was diagnosed with cancer.  He was ten-years-old.  Our daughter, Mackenzie, was 12 at the time.  

Two brain surgeries.  Thirty-two radiation treatments.  Nearly two and a half years of alternating between living in hospitals and shuttling back and forth to chemo appointments, all the while homeschooling both children because we couldn’t have them around the germs of a full classroom.  The career I had hoped for had morphed into something entirely different.  My career now was as teacher, patient advocate, nurse, doctor, mom.  It may not have been a job that paid well, but it paid in ways that can’t be measured by most.  It allowed me to spend the last two years of my son’s life with him, 24/7.  That is priceless.

Keeghan died in 2008, a full seven years after I had finished college.  In that seven years, I had worked for less than two.  As soon as he died, my “job” in life was just keeping it together.  Keeping my 14-year-old daughter who had once told her little brother, “If you die Keeghan, I will have to kill myself because I can’t live without you” alive.  Keeping my marriage from completely folding because the weight of grief was so heavy.

I won’t lie, I remember very little about the first two and half years after Keeghan died.  I was treading water in an ocean of tears.  Mike was still active duty in the Air Force, Mackenzie was attending a public high school, and I was home wondering what to do with my life.  

In 2011 Mike got orders to go to Okinawa, Japan.  That assignment was the catalyst I needed.  It got me to a new place, away from family and friends who did more to make the grieving worse than they did to help.  In Okinawa I found an international women’s group to get involved with, eventually holding two positions on their Board of Directors.  Ironically, one of the positions was as Secretary.  My forever curse.  But I learned in working for that group that I was still capable of working, of doing something well.  When we found out in December 2012 that Mike had been selected for a squadron commander position in California, I knew it was time.  Time for me to finally get out and find a job.  Mackenzie would be starting college in California.  There was no reason anymore for me to be a stay-at-home-mom.

Which brings us to now.  I am a 47-year-old woman with two degrees - degrees that, for the record, I kicked ass at - but still . . . two degrees that are 12 years old, with less than two years of paid work experience to support.  I’ve been applying for jobs for two months now and have received nothing but replies of “does not meet minimum qualifications.”  Admittedly, I am in a somewhat remote area of California, so jobs within a reasonable commuting distance are not abundant.  But I cannot describe how much it pains me to apply for a Department Assistant position, nothing more than a GLORIFIED SECRETARY JOB, and receive an email back saying, “Unfortunately, we are not moving forward with your application at this time. We encourage you to visit our career site at blahblahblah . . .” from a human resource assistant.  

Don’t just stab me, why not twist the knife a little while you’re at it?  

I should be working in the human resource department somewhere, and instead I’m being turned down for secretary jobs by one.  My resume full of volunteer positions is probably a source of great amusement for these people who have been fortunate enough to work.  People who probably think I’ve led a pampered life.

I never meant to be a stay-at-home-mom.  I never meant to be nearing 50 and unemployed.  Unmarketable.  Unworthy.  Considering the way our family’s life went, I wouldn’t change anything.  But still . . . I’d like a chance to prove myself now.