If I Knew Then…

This week, my husband and I celebrate 11 years with our Ultimate Bengal Fan. It doesn’t seem like he’s been with us that long. I now have a much clearer understanding of the saying, “The days are long, but the years are short.” Those early days of mommyhood were so long and I spent much of my time wishing they would pass.

The seemingly endless days of early childhood were tough. Unlike the traditional route, where you have several months to prepare for your child, I had 3 weeks. While my husband and I had spent months jumping through hoops at the state and federal level in the US as well as the Russian government, it was all just paperwork. We had a crib and a few other things, but that was it. When you adopt, you don’t have a due date. It’s pretty much a hurry up and wait kind of thing, at least it was with us. One day you’re living your life and the next you’re scrambling to finish paperwork, buy airline tickets, gathering baby things and generally running like a chicken with your head cut off to take off for a foreign country where you can’t even read the alphabet.

I did learn that I love the people of my Fan’s home region in Siberia. It’s beautiful and the people are hard working and friendly. Our return to Moscow was a bit like being in New York City, only you couldn’t read the signs. It’s busy and crowded. I don’t like crowds. And it is a bit disconcerting to go to the grocery and be greeted by guards carrying weapons. Kroger doesn’t look so bad any longer. I learned that while I may not like a lot of things in the US, it’s still better than many other places and I literally knelt down and put my head to the floor after we landed in Boston (despite being tired, I drew the line at actually kissing the ground. I still had a bit of sense after being up for 26 hours straight). I was not only thankful for my home, but that there were changing tables in the bathrooms. It’s the little things, trust me.

It was that trip, and the subsequent one to Guatemala to bring home the B-man, that shaped me for my future challenges. Both my sons faced challenges stemming from being orphaned as infants, albeit different since one was in an orphanage and another in foster care. I learned I’m much more resilient than I give myself credit for. I learned to think on the fly and that life cannot be put into a nice box, allowing you to pick and choose what will happen. It just goes and you have the choice to go follow the current or try to swim upstream. There are times to be the water and times to be the spawning salmon. You just have to know which is which.

Cancer is like that. You have to know when to fight and when to let it go. I’m not talking about the “calling in the hospice” letting it go. I’m talking about taking a nap, letting the chemo do it’s thing and having a pity party kind of letting it go. It was a tough act two years ago and is still a tough act. I’m still fighting the incredibly taxing side effects of chemotherapy. I still fight neuropathy, bone pain, nausea, headaches and stomach issues. Anemia, which I had filed away as a past issue, has raised its ugly head again. The rain today is making me feel achy and just plain yucky. I am bummed because this is the first Saturday in I don’t know how long that I actually had time to attend a volunteer meeting for the Ovarian Cancer Alliance in my hometown. Instead, I’m sitting here hoping that my hands last longer than the words in my head.

I thank God every day for the gift of motherhood. He knew exactly which children we should have and when we needed them. It wasn’t on our timetable, but His. He knew that I would get cancer, but made sure my precious sons were old enough to understand and help me out, but that I would be around to make sure they would continue on their path to be well-rounded, faith grounded and loved beyond measure young men. My prayer has always been to see them start off in their chosen fields (choosing to see them graduate from high school seems cliché. I want to see them soar). He placed us in a homeschool environment so my boys would be able to be hugged, cared for and blessed by people who were friends.

Every day puts the odds into play. Every day is a gift. Good days are filed away and bad days bring home the fact that the battle continues. Cancer is a lot like a foreign country. If you stay long enough, you learn the language, adapt to the weather and find joy in the culture. If I knew then that I would face ovarian cancer, I might have paused about bringing my children home. But then I wouldn’t know what I know now.

The days are long, but the years are short. It’s what you put into them that counts.

Educating the World

The past few weeks I have felt like a hamster on a wheel; running but getting nowhere fast.  I’m in the midst of my quarterly doctor and lab visits (2 more to go!), Vacation Bible School (VBS), a major writing project, a sick cat and prepping Braeden for endoscopy next week, all while trying to maintain some semblance of a home and the schedule that goes with being a family.  For those who think being a stay-at-home mom or working from home is easy, I dare you to try it for a week.  I can almost guarantee you’ll be running for the front door within a month, particularly if you really like that extra paycheck.

My choices in life (whether I’ve made them voluntarily or circumstances have dictated them) have generally involved me having to, at some point, educate the world.  When my husband and I chose to adopt internationally, we found ourselves educating people on the nuances of international adoption.  For those who aren’t familiar with our choice, here’s a brief history.  After 5+ years of unsuccessful infertility treatments, we chose to adopt.  The best choice for us was international adoption.  It wasn’t that we were opposed to adopting from the US.  It was simply because that God had decided that these two boys – one in Russia and one in Guatemala – needed us as parents, and we needed them to be our sons.  We traveled and had two of the most incredible experiences of our lives and continue to be blessed to watch our sons grow from infants into young men.  Even before the boys came home, we found ourselves educating our families and friends on international adoption, even as we were being educated ourselves.  Once they came home, the education continued.

While we are still asked about adoption, it’s less frequent, especially in the case of our oldest son who was born in Russia.  He looks like the all-American kid, especially when he wears his ever-present Reds baseball cap.  Our younger son is a different story.  Being from Guatemala, he does not “blend in” with the family.  Our immediate circle of family and friends don’t notice his gorgeous brown skin (I am insanely jealous of it) any longer, but others do.  Being Hispanic he will have to face prejudice.  We’d dealt with it once before, while he was in kindergarten at our homeschool co-op, but the parents of the other child were on board with educating their child.  The boys ended up being friends.

This week, I found myself in the position of “educating the world” again.  My normally happy-go-lucky son was the target of prejudice and bullying at VBS.  He stood up for himself and did all right things (told the kid to stop, talked to his crew leader), but it didn’t help.  After night #2, he talked it over with us.  After I calmed down, I requested a crew change and got it immediately.  However, I found myself in the situation of educating the world, when I had to reiterate the whole adoption and “not looking like me” idea.  Seriously, it’s 2014.  This is NOT a new concept.  Yet I did it, not for them, but for my son.  That’s what a momma does.  She advocates for her child in an effort to show them they aren’t strange or weird or anything else.  They are who they are and if people don’t like them, that’s their problem.

Once I cross that bridge, I get to educate the world about homeschooling.  Fortunately, I am not alone in this boat.  I have lots of friends who find themselves having similar conversations.  Actually, I tend to forget there’s a whole other world out there that goes to public or private school.  The boys often have to remind me of this when I ask why there are so many buses on the road.  Yet, I do end up explaining that this is what’s best for our family and, quite honestly, one of the things that kept me sane during chemo.  I had to get up and “do school” with the boys.  It was a reason to get out of bed and stay up.  It was one of the few times I was “normal” during those long months.  My kids have thrived in homeschool and I have discovered that Kyle does much better teaching himself and Braeden has a real talent for science so I can use these to my advantage when teaching them.  I’m not sure they’d be afforded the same opportunities elsewhere.

Of course, my biggest educating moments come with cancer.  Now that I look “normal” again (meaning my hair has grown out to shoulder length and I have color in my face), when I mention that I’m a cancer survivor people assume it was breast.  Then I explain it was ovarian.  Then I either get the look of “Why aren’t you dead?” or “When will you die?” as if ovarian cancer is a death sentence.  And for some women, it is.  If you’ve read this blog for any length of time, you know that I was extremely fortunate in that my cancer was found at stage 1.  I underwent 7 grueling rounds of chemotherapy that has given me side effects I wouldn’t wish on anyone.  I am faced with the lifetime of oncology visits, scans and blood work.  I found out last week that the infusion port that was used for my chemo is a permanent part of my anatomy until it needs to be replaced.  My veins are shot.  They were never very good, but the chemo took what little bit was good and ruined them.  Now I get to educate people on my port, why I have it, why I keep it, and all that jazz.  I have never rebounded energy wise.  Yes, I am on the cusp of 50, but it’s the new 30, right?

As I’ve said, ovarian cancer suvivorship is a tight knit club.  Most survivors face at least one more battle, whether it’s 2 years, 12 years or 20 years later.  You walk a tightrope of living life and glancing over your shoulder for the beast.  The scars don’t go away for any cancer survivor.  Unfortunately, most of my scars aren’t visible (I seriously doubt anyone would want to see my surgical scar given my current physical condition, which is a nice way of saying I don’t have a bikini body).  Let’s face it, no one wants to hear you complain after you’ve completed chemo.  You’re supposed to be “cured.”  You look good, why don’t you feel good?  I want to shake people and say “Because I had ovarian cancer you idiot!”  Instead I smile and try to explain that the very drugs that kill tumor cells have side effects which can last years.  I tell stories about chemo fog enhanced with menopausal forgetfulness.  If I’m really irritated, I launch into a highly scientific explanation of bone loss and nerve damage due to the heavy metals in carboplatin and the cell turnover in taxol. I tend to save that for only the truly irritating “experts” who read a lot, but have never had cancer.  It’s fun to watch them squirm.

I used to plan for everything, now not so much.  I look maybe a couple of months out, but that’s it.  My husband did get me to think about how we wanted to spend our 25th wedding anniversary in 5 years (we just made it to 20, but don’t ask me how).  We decided Hawaii might be nice.  I do have a plan.  I plan to have a bikini body and I know my scar will be on prominent display (hopefully it will just be the one).  This will be one time I won’t mind educating the world.  I figure being 54 and having a killer body is worth the hassle of having to educate the world.

Honestly, we’re all educators.  We’re all called to educate in our own special way; by our words, our actions and our choices.  Some of use just educate a bit more than others.

 

Lest I Forget

Yesterday I took my youngest to the pediatrician for some, shall we say, dietary issues.  Basically the boy burps and toots from sun up to sundown.  And while I could regale you with snippets from the conversation he had with his pediatrician, that’s not the reason for my post.  Okay, just one.  Dr. Debbie:  “Braeden, where does your tummy hurt?”  Braeden:  “Right here.” (pointing just below his stomach).  Dr. Debbie:  “Does it hurt when you burp?” Braeden:  “Nope!  It feels good.” (note the emphasis here).  Dr. Debbie:  “And you have to pass gas too?” (so politically correct).  Braeden: “Yes, I fart.”  Dr. Debbie: “Do they smell?” Braeden: “Yep, they’re stinky.”  Now, if you know my son, you should be rolling in the aisles because you can visualize his facial expressions.  For those of you who’ve never had the privilege of meeting Braeden, just use your imagination.

But I digress.  When Dr. Debbie (our pediatrician) walked in, she said “Wow, you’re hair’s getting really long.”  Now, I actually stopped to think why she would even comment on my hair.  It took a couple of minutes for it to actually dawn on me that the last time she’d seen me, I had just passed the stubble stage.  I’d actually managed to forget I had cancer.

So, for the first time in almost 14 months, I had freedom from cancer.  Well, not actual freedom, but close enough!  It was a bittersweet kind of thing.  It was good to be free from the obsession of cancer.  On the other hand, it scared me to think I wasn’t being diligent.  So, of course, I obsessed about it for the rest of the day.  Okay, I obsessed until the Opening Ceremony started at the Olympics.  Then I got to listen to my son obsess about his birth country.

At that point, I traded one obsession for another.  I used to obsess about being an adoptive mom.  When my oldest came home, it was all about all things Russian.  I had Russian toys, Russian CDs, Russian meds, Russian food.  My son, being the good little Russian boy he is, brought home Russian bacteria that was unfamiliar to American screenings and had a raging bladder infection.  Ten years later, we are still battling Russian bugs.  This time they are H.pylori bacteria that are causing an antibiotic resistant ulcer.  Nice to know he brought a bit of the old country with him.

I spent so much time worrying about being the mom of a child who was both adopted and from a foreign country.  I read books, joined support groups and pretty much obsessed about my ability to parent.  When my youngest joined the mix from Guatemala, I now had double the reason to obsess.  Of course, my youngest is the opposite of his brother, so that just added to my drama.  As you can see from the introductory paragraph, my youngest is quite a character.  His older brother is much more controlled (this is an understatement) and has a dry sense of humor.

Then there was the whole multi-racial thing.  Don’t even get me started.  Race is an issue, yes.  My son knows that some people treat him different just because of his skin color.  Fortunately, he lets it roll – most of the time.  Once I heard him say, “Don’t people realize I think they look strange?”  That’s my boy.  And that’s when I quit obsessing.

I have actually managed to move through the last few years “forgetting” they are adopted and not from the USA.  I guess I’ve moved beyond the labels.  People sometimes ask if I see my son’s skin color.  Of course I see it!  But I also see his infectious smile, massive cowlick and stubborn attitude toward school.  It’s just part of his package.

Once I passed over the adoption obsession, I moved onto the homeschool obsession.  Homeschoolers are, by nature, an unconventional bunch.  I obsessed about choosing the right curriculum, co-op, teaching style and extra-curricular activities.  We entered our 6th year of homeschooling this year.  I will say it took me almost 5 years to quit obsessing.  Now my biggest complaint is “Where did all the buses come from?” on Monday mornings as we try to get to co-op.  I “forget” that most people don’t homeschool, which seems REALLY odd to me. Now, I just roll with the punches, just like I do with being a parent.

So I guess it really shouldn’t surprise me that I forgot about my cancer.  I have a pattern of obsessing and forgetting.  I know that I never really forget.  I am cognizant of how my family was formed, that we don’t school the way most people do and that I am very fortunate to be here to blog about this.  I know all these things, I just don’t keep them in the forefront.  Of course, chemo fog helps with this on bad days.

I’m about a month away from my quarterly check-up so I know obsession is right around the corner.  I’ll be thinking about tumor markers and wonder if I will be able to keep the barium down until after the CT scan.  I will be in a major obsessive state until the doctor gives me the thumbs up or down.  His answer will help me decide which can of worms to open.

Oh, and lest I forget, thank you, dear reader, for your comments.  I AM putting my blog into book form.  This is not an easy process especially with chemo fog, homeschooling, freelance writing and my current obsession with “Candy Crush Saga.”  But I am working on it.  Rest assured, I won’t forget.

Ten Years of Life

It’s ironic that the snow is falling and it’s cold today.  I hesitate to use the term “bitterly” because I’ve been where it’s bitter cold and this, I’m afraid to tell you, isn’t.  Bitter cold is taking a breath in through your scarf and the cold still burns your lungs and freezes the mucous inside your nose.  It’s spitting and having it freeze before it hits the ground.  THAT is bitter cold.  This is just chilly.

It was in bitter cold that John and I made the trek 10 years ago today to a military style courthouse in Chita.  We sat in a cold hallway waiting for the translator to tell us it was time for our hearing.  The courtroom was even colder since it had tall windows along one wall that were thick with ice on the outside.  The judge strode in along with everyone else and began barking out the proceedings in Russian.

Now, when we landed in Moscow the first thing that struck me was that the Cold War was still going on.  The airport was painted in a cheery military gray and there were armed guards EVERYWHERE.  In the midst of this, VH1 was on and there stood Mick Jagger on an 8 foot high screen belting out “Brown Sugar.”  I still get a headache from the paradox.

Traveling to a foreign country is a unique experience.  Now imagine doing it with $20,000 in cash strapped to your body.  John and I had managed to split it up so we didn’t have to declare it coming into the country.  We still panicked through customs, especially since we were the last Americans off our plane, the last to have our passports and visas stamped and the last to figure out where the heck we had to go.  Finally we found our translator and she helped us get our luggage and explained the ground rules for the rest of our time in Moscow.

From Moscow to Chita, we were treated to an Aeroflot flight. Now, if you’ve never had the opportunity to fly on a post-Soviet era Aeroflot jet, DON’T.  Seriously, run away!  While standing on the runway with the couple we were traveling with to the region, the maintenance crew started tapping on the front landing gear with a screwdriver.  Now, I am in no way a mechanical person, but it seems counterintuitive to tap on metal and rubber in the cold with a sharp instrument.  My expertise is limited to watching Delta at the gate.  I never saw them do it, so I’m assuming it’s an Aeroflot thing.

We were assured our crew spoke English.  Yep, “Meat or Chicken?” “Water, no gas?” (Sparkling water is the drink of choice in Russia.  This is flat water like what comes from the tap) and “You okay?” were the sole words we heard.  Children were given potty chairs to use.  The little girl in front of me used hers twice during the 6 hour flight.  That was fun, especially since it was stored under her seat by my feet.  I dropped my chicken on the floor.  The plane’s bathroom was an experience.  I quit drinking immediately after I used it an hour into our six hour flight and began about an hour before we would land knowing I could probably hold it until I got to the terminal.  As I waited an man who obviously flew with a flask of vodka let me have it in Russian.  He had tried to ask me a question and my response was, “Sorry, English speaker.”  What a tirade.  Of course, I am one of the few people I know who can say they’ve been cussed out in Russian.

The landing was fun – if you like ceiling tiles falling out on your head connected only by shoestrings.  Yes, shoestrings.  The look on John’s face is etched permanently in my mind.  Normally, we are patient and will wait to exit the plane.  I have never seen my husband move so quickly to get our things and shove us off a plane.

Exiting the plane, that was an adventure.  Imagine walking onto another planet.  That’s what we did.  It was cold (-20F) and everyone is bundled up to their eyeballs.  You walk down the steps and onto the tarmac.  It’s 7AM but pitch black.  Only the lights of the terminal and the runway are visible.  There’s ice fog in the distance.  You are searching in vain for the one person you know speaks English.  Fortunately I am married to a very tall man and Katia (our host and translator) was able to spot John right away.  She led us inside and to a clean bathroom.  After waiting for over an hour for our luggage (yep, it happens in small airports too).

At this point, I am ready to chuck the entire trip.  When I landed in Moscow, which was my first time out of the country, I sobbed – for hours.  I wanted my Dad.  I wanted my bed.  I didn’t care why I had made the trip, I just wanted to go home.  Even though the staff at the hotel spoke English, I couldn’t read anything.  It was in Cyrillic. I had never felt so utterly alone.

Our arrival at Baby House #1 was surreal.  The outside of the orphanage looked like a gingerbread crazed designer had taken over the playground.  The playground was decorated in lollipops, gingerbread houses, sugar plums and anything else you can imagine, encased in a half foot of snow with a thick layer of ice on top.  My glasses were fogged up from the change in temperature. When we entered the building the blast of steam heat caused my glasses to steam up more then defrost.

As we were lead through the Soviet era building to the music room, we met the 3 year olds who had been practicing for their New Years concert.  Despite being cold, their little faces thawed all of us out.  Then the wait began.  This was why we had traveled half way around the world.  After 20 minutes, it was all worth it.  A baby boy with the most beautiful gray eyes and charming smile was placed in my arms.  Despite John’s comment that he had a big, pale head, I was in love.  This was the son God had promised me.  I felt like Sarah holding Isaac for the first time.  This was my child.

As I look over the last ten years, it’s been quite a ride.  Kyle has faced his fair share of struggles.  He has chronic gastritis caused by an antibiotic resistant ulcer as well as some other challenges that are a result of spending the first 5-1/2 months of his life in an institution with only his most basic needs being met (he remained in the baby hospital until there was room for him in the orphanage).  When he was transferred to Baby House #1 the head caretaker, Ludmila, made sure he was cuddled, sung to and loved until John and I got there.  I firmly believe that his intense love of music is a direct result of Ludmila singing to him every day.

Kyle has had to deal with more loss in his young life than most twenty-somethings have ever had to face.  He lost his family of origin and his caretakers before he was 8 months old.  He lost his beloved Papaw shortly before his 3rd birthday.  His Opi died before his 6th birthday.  Our family dog, who fiercely protected Kyle from the moment she met him, died in 2010.  Last year, he had to face the very real possibility that his mom might die.

My son is amazingly resilient.  I know he still fears losing me as much as I fear leaving him and his brother.  Next week, I see my oncologist for my quarterly appointment.  While he never says anything, you can see the subtle change in his eyes.  He is more willing to hug me.  He will actually sit by me on the couch.  He never talks about how scared he is, because he is trying to be strong for me.

This child, who I would willingly give my life for, has put himself in front of me being my anchor to this world.  In the little bit he has said, he firmly believes that we can beat cancer.  Not me, not my oncologist, but we.  He pushes me to be my best.  He reads labels for soy and artificial sweeteners.  He looks for opportunities to lay a teal ribbon.  He sends “hellos” to my chemo nurse, even though he’s never met her.  I always ask the boys if they have a message for my oncologist when I go to see him.  Kyle’s is always “Please keep my mom safe.”  Not cure my mom, not keep the cancer away necessarily.  Just keep her safe.  It’s as if he knows that someday I won’t be here, but for as long as he needs me, do your best to keep her here since I’m not ready to let her go yet.

So with tears streaming (yes, I do cry when I write these), I can hear my son flipping the pages of his beloved Sports Illustrated Kids. Occasionally he will spout off a statistic, but mostly I am hearing the sound of pages turning. While he can drive me nuts, as all kids can, I am so thankful that I have yet another year to celebrate the Forever Family that God blessed me with.  Please God, keep me healthy so I can see him and his amazing baby brother, grow into the strong young men you want them to be.

Happy Forever Family Day, Dma.  Know what whatever happens, your Momma loves you more than you will ever know.