There Is No Good Cancer To Get.

I took a break this morning between dropping Tessa off at school and an appointment for myself.  I stopped at my favorite little coffee shop and waited for my latte so I could go sit in the corner and return long awaited emails.  As I waited, a woman approached me.  “That’s a sweet sticker you have there,” she said.  Confused by what she was referring to, it took me a moment to remember that Tessa placed this sticker near the bottom of my shirt this morning.  I smiled, “Oh!  Thank you.  I forgot my daughter put it there this morning.  She was putting these stickers on everything today.”  The sticker reads I Care For Kids With Cancer. We have a few of those laying around that somehow resurfaced after a good house cleaning this week.

IMG_20150602_085803She paused and looked at me with a curious smile, and in that moment I felt very driven to tell her that my daughter was a cancer survivor.  That should explain this sticker, I thought, since it seemed to warrant some sort of explanation.  Clearly I caught her off guard.  “Oh wow.  May I ask what kind?”  “Leukemia,” I said.  After brief conversation regarding her slight connection to the peds cancer world, came a phrase that punched me in the stomach and nearly knocked me to my knees.  “This seems a little weird to say to a stranger but, you know…if you’re going to get cancer, leukemia is the one you really want to get. That’s the good kind.”

No.  No it is not.  There is no good cancer to get. From the time Tessa’s doctors first uttered the word leukemia to us, I can assure you it was not at all what we had hoped for or wanted. There were no high fives or cheerful embraces.

So I stood there quietly with my eyes staring at her blankly, holding on tight to my tears. In what felt like ten minutes (but was realistically five seconds), I relived the horror of what leukemia did to my daughter and what it stole from my family. Eight months of worry leading up to her diagnosis.  Six and a half grueling months of chemotherapy and hospitalizations. Nearly ten weeks of isolation. Debilitating nausea and violent vomit attacks.  Handfuls of hair laying on her pillow and on my lap–lord how that falling hair hurt me. Trips to the hospital barber to shave the last few strands of hair from her beautiful head.  Skin rashes and mouth sores.  Central lines. Tape stuck to and ripped from her body on a daily basis. Sponge baths…awful sponge baths.  Well over ten bone marrow biopsies, and too many needle pricks and lab draws to keep track of at this point. All of this and so much more at the tiny age of two.

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Certainly this woman wasn’t suggesting that Tessa’s courageous fight against cancer was a breeze, was she?  Because she believes leukemia is the “good” kind?  No, she had to be referring to the survival rates…right?  Just for the sake of that speculation, take a look at St. Jude’s statistics for AML survival rates here.

I hope these are not viewed as “good enough” statistics because, to me, they are not.

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I collected my thoughts, recalling what I have learned from my therapist:  we can’t do anything about what people say, but we can do something about how we react.  I took a deep breath and tried to think of an appropriate response.  “Well, sort of.  For the kind of leukemia my daughter had and given the fact that she also has Down syndrome, statistically there does tend to be higher survival rates for this situation,” I said, followed up with “…but that isn’t always the case and, after all, those are just figures.”  Here we go again with statistics and ratios and probability.

What the hell kind of answer was that, I thought to myself.  Tell her she has no idea what your daughter went through.  Tell her about the relapse scare. Tell her how rare Tessa’s case was.  Tell her how about the fears–all of them.  Tell her there is no way she understands that gut-wrenching pain.  Tell her how much that just hurt you.  Come on, just tell her!

But I couldn’t.  Because I could see that she believed she was coming from a good place, and I believed her intentions were from the heart even though her words cut me deep.

Tessa mom

Just because Tessa survived does not mean her fight (and victory) is any less valid than someone else’s.  It also does not mean that anyone’s else’s fight who did or did not survive because of any kind of cancer is any less honorable either.  And I can also tell you firsthand that after living the cancer lifestyle, others I knew then with cancer weren’t vying for someone else’s.  Do you want to know why?  Because every kind of cancer sucks. Everyone is fighting to survive–no matter what kind of cancer they have.

The only victory lap I ever did because of leukemia was in honor of Tessa as she walked her first survivors lap at our family’s first Relay For Life event.

tessa relay 3

I left her with this.  “She is 3.5 years old now and doing very well.  She is in full remission.  Thank you.”  She smiled and wished my day well. Maybe I should have told her.  Perhaps I could have shed some light on my viewpoint about cancer.  But I didn’t, and I feel okay about it.

I took my latte back to the plush chair in the corner and reflected on what had just happened.  Only a few tears this time.  This is not the first time someone has made a remark about Tessa, Down syndrome or her leukemia–well intended or not–that just hurt.  I know it will be far from the last, too.  These times are unpredictable.  They appear out of nowhere, and I am forced to confront words and phrases I would rather avoid.  Sometimes I wonder if these specific experiences happen to me so that I can use them as a platform from which to share my voice.  Or maybe that is just how I choose to deal with them.  Either way, as much as these times sting, I am glad to share my perspective.  Even if just one person’s view changes because of it.

Just because it is over, doesn’t mean it is ever really over.  I will stand by that forever.  Those on the outside often forget that.

I wore that sticker on my shirt intentionally after my coffee shop run-in for God only knows how long today.  Somewhere throughout the day I lost it; but it didn’t leave my mind.  Had I only known that this sticker would have stirred up so many emotions in me today, I may have taken it off.  But man, am I glad I didn’t.  I do not care how old or young a person is.  I am not interested in what specific kind of cancer someone has.  All for one and one for all.  I am throwing my fist up in solidarity to everyone facing this awful disease–in all of its forms. To the woman in the coffee shop and to people everywhere, please know this:  There is no good cancer to get.  Period.  

In The Pictures

I did something different this past weekend.  I welcomed a photographer friend (who I was finally lucky enough to meet) into my home to do a photo session with my girls.  This was not your typical photography sesh.  No coordinated outfits, curled hair or heightened expectations.  No frustration because two busy little girls wouldn’t sit still or smile when they should. Nope.  It was just me and my girls doing what we typically do at home.  If you’ve ever wondered what it would be like to have a mouse in the corner of your own chaos, I imagine this is similar. Because I had Kari there for a few hours to document it all.

I read about Kari’s documentary style photography through her blog a few months ago, and I was immediately intrigued.  She visits your home, and you carry on as though she isn’t there.  Meanwhile she captures what she sees–real life in action.  You know, the parts of daily routine that as parents we neglect to see.  And if we do see, we often struggle to see the beauty within the little moments.

So I booked a session for two reasons.  For one thing, I know I am blind to things that surround me; constantly convincing myself that the sink full of dirty dishes or laundry piled on the floor or messy, mismatched clothes are all signs of me not doing a good enough job; pressuring myself to keep up with all that needs to be done.  Second, I find myself in less and less pictures with the kids lately.  I am there in those moments I capture, just on the other side. One rare occasion I will snag a selfie with one of the girls but that’s about as good as it gets. If I am in one, I usually nit-pick myself to the point of deleting the photo.

What the hell, I figured.  In my quest for contentment, I have often wondered what I look like as “mom” in routine scenarios.  Do I smile enough at them?  Am I engaging enough? Am I focused?  Do I look as tired as I feel?  Can they feel my love for them when I am near them? I liked the idea of being unscripted.  I wanted a glimpse at real life bonding with my girls.  The boys were out doing boy things (because they need that as well), so it was a girls day.

Prior to Kari’s arrival, I began stressing out over the mess that was my house–like I do every time I know someone is on their way; rushing to pick up every last toy that was on the floor, folding up blankets, getting the girls dressed and, of course, stressing about those dirty dishes.  When on earth would I have time to get to them before she would knock on the door?  I hadn’t even dried my hair or put makeup on yet! There was also a hamper full of clean laundry in the living room just begging to be folded for the third day in a row. But it was not going to happen.  And I had accepted it.  In that moment, I felt free.  It is what it is, I told myself.  If I wanted to see what me being a mom really looked like from another perspective, then I would have to allow myself to let go of the little things that don’t really matter.  Like the dirty dishes.  They could wait.  I went back to my bathroom and dried my hair.  I threw on a little bit of mascara and wiped powder just below my fatigued eyes, hoping to at least appear bright eyed and ready.  I threw on a pair of faded leggings and a regular old shirt.  On any given day, that is me.

I got the girls a snack and sat down at the table as we waited for Kari.  Seconds later, she was knocking on the door.  The girls greeted her excitedly because they are absolutely charming like that.  We talked for a bit, then she got to work.  But really, it was as though she didn’t even have a camera there at all.  The girls and I began doing an alphabet floor puzzle.  We do this puzzle every day–like three to four times a day.  Kari and I chatted periodically, while the girls entertained us with silliness.

It was also Kendal’s second birthday and we needed to make a cake for her party later that day.  My girls love “helping” me in the kitchen.  This is about the only time a mess doesn’t make my eye twitch.  I love when they get their busy little hands into food and creativity in my kitchen.  The TV is off, and the only thing they fuss about while their chairs are pulled up to the counter is who gets to help me first.  I can live with that.

After the cakes were in the oven, we headed to the back yard.  It was a gorgeous day, and the only thing Kendal and Tessa love more than Dora the Explorer is playing outside.  Pretty standard stuff here. Swings…check.  Sandbox…check.  Slide…check.  Bubbles…check. We played outside for a while, then went in for lunch.  There was a very typical battle over who wants what to eat and what I make. Meh (shoulder shrug).  Kari finished up and checked out of the Carey house for the day.

The next day I received an email that our gallery was up and ready to be viewed.  Already?  She took like 300 pictures, how is that even possible?  I froze looking at each shot, admiring what I saw.  In each picture was beauty and love.  And you know what?  Not once did I see the dirty dishes or clutter on my counters.  I didn’t see the sippy cup laying on the floor or the dog toys haphazardly scattered in the doorway.  I didn’t see notice the laundry or disarray.  At first glance, even second and third glance, I didn’t see any of that.  You know what else?  I didn’t criticize my appearance at all.  I wasn’t ashamed that the “flaws” I obsess over were in plain view.  I felt flawless, actually, and proud to see that when my girls look at me they see and feel love.  In front of me was proof I could not deny.

Family Documentary Photography Family Documentary Photography

Family Documentary Photography

Family Documentary Photography

I am my biggest critic, and I know for a fact that others are guilty of this as well.  As parents, it is easy to be hard on ourselves.  We have a big job to do, don’t we?  We give into moments of self-doubt, questioning if what we are doing is enough.

Family Documentary Photography

 

Family Documentary Photography

What we are doing is enough.  As long as there is love in our hearts and happiness in our home, it will always be enough.

Family Documentary Photography

 

Family Documentary Photography

 

Family Documentary Photography

Live and breathe in these little moments because they are still moments, and eventually they will pass by without any return.

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Kari, thank you so much for giving me the gift of memories.  You have such a unique gift, and I am glad you shared it with me.  I cannot wait to get my hands on some prints to put up in my house!

You guys, she rocks…look her up!

Check our Kari’s super sweet blog post from our session here!

And visit her website to view her amazing work!  She is also hanging out on Facebook, so go ahead and give her a big “Like.”