Pink Ribbons and Pumpkin Spice

It’s the middle of October.  I realize this is not Earth shattering news, but it’s what got me started thinking about this blog.

pink ribbon pumpkin

When I was a kid I used to love the month of October.  Yes, it was partially due to my birthday being in October, but I also loved so many other things that only are done in October.  I loved visiting orchards and pumpkin patches (which as a kid seemed like two different locations but as an adult I’m thinking it was really just one) and my elementary school had a fall festival.  I would plan very elaborate Halloween costumes which was a) silly because I lived in the country and could only trick or treat at about five houses and b) unrealistic as many of my ideas would have required a Tony award-winning costumer.  When I was five my mom made (as in sewed with a sewing machine) me a pumpkin costume and bought me green tights, when I was six she made (again sewed) a witch costume and made a pointy hat and when I was seven she made a Bugs Bunny costume complete with a faux fur head.

October was the best month ever and it ended with my two favorite holidays – my birthday and Halloween.  As a Queen of course, my birthday is a holiday.

Now October is over run with Pumpkin Spice and Pink ribbons.  The first is just a strategic combination of cinnamon, nutmeg, ginger and all spice but the way it’s advertised you would think it’s some miraculous super food that everyone must consume in the Fall.  And I won’t lie, I like a Pumpkin Spice Latte or two when they come out however I refuse to buy Pumpkin Spice cookies and candy and cereal and…. the list goes on.

The second is complicated for me.

Pink is one of my favorite colors (duh, my blog is PINKbookdiary).  And breast cancer has taken more from me than you can possibly imagine.  So, you might imagine I have a lot of pink ribbon adorned stuff but here’s where it gets complicated.  I’m not a big fan of all the pink ribbon adorned stuff you can buy in October and I haven’t been for a while – like ten years to be specific.  It’s like the Pumpkin Spice stuff, it started out as a great coffee drink from Starbucks and then everyone had to jump on the bandwagon.  The pink ribbon started out to promote breast cancer awareness when it was an underfunded type of cancer (PS it was originally Peach).  Now you can buy shoes, socks, shirts, pants, lunch boxes, gloves, hats, appliances, pens, stickers, safety pins… do I really need to keep going?  Go to Amazon and search pink ribbon merchandise, there is 20 pages of stuff.

I saw a Facebook post the other day from a young woman captioned “Breast Cancer is not Pink Ribbons” and she shared a picture of herself topless revealing two horrific mastectomy scars, she was in the middle of chemo so her IV port was accessed and her bald head was covered by a scarf.  She had a point.  Breast Cancer is ugly and the farthest thing away from a pink ribbon as you can get.

But…… the pink ribbon worked.  Breast cancer is the #1 funded and researched cancer (both by government and not for profit organizations) in the United States, twice as much funding as Prostate Cancer which is the 2nd highest.  And yes, Childhood Cancer – which is like 25 cancers rolled into one title – is still at the bottom of the list receiving 4% of the National Cancer Institute Funding.  That’s when my dislike of pink ribbons began.

So, like many things in my life I have a love/hate relationship with pink ribbons.  And Pumpkin Spice.  And I miss my mom and the October’s of my childhood which were filled with pumpkin patches and orchards and festivals and Halloween costumes that were more than just themed lingerie. I really wanted to insert a line from Mean Girls here, but it’s probably not appropriate given the next sentimental and super emotional part of my blog.

Since it is Breast Cancer awareness month I want to share a poem that I found from 2004 that my mom happened to clip out and give to me but I don’t remember why she gave it to me.  Now it’s her:

I find an old photograph

and see your smile.

As I feel your presence anew,

I am filled with warmth

and my heart remembers love.

I read an old card

sent many years ago

during a time of turmoil and confusion.

The soothing words written then

still caress my spirit

and bring me peace.

I remember who you used to be

the laughter we shared

and wonder what you have become.

Where are you now,

Where did you go,

When the body is left behind

and the spirit is released to fly?

Perhaps you are the morning bird

singing joyfully at sunrise,

or the butterfly that dances

so carelessly on the breeze

or the rainbow of colors

that brightens a stormy sky

or the fingers or afternoon mist

delicately reaching over the mountains

or the final few rays of the setting sun

lighting up the skies

edging the clouds with a magical glow.

I miss your being

but I feel your presence,

in whatever form you choose to take,

however you choose to be.

Your spirit has become for me

a guardian angel on high

guiding, advising and watching over me.

I remember you

You are with me

and I am not afraid.

~Kristi A Dyer

OK so now you’re in tears, well I’m in tears, so Mean Girls it is:

 

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Comfort Zone

So on this first day of Childhood Cancer Awareness Month, what should I blog about?  There’s a lot I could say or have an opinion about for sure.  But I keep going back to a question I was asked not too long ago – what’s your favorite picture?  I don’t even have to think about it.  Here’s my favorite picture of all time (and yes I took it):

5jump

It reminds of a great evening with my family – even though there was nearly a knock down drag out fight to get everyone to the beach that night.  That probably makes it even better.

I have other favorites too:

053Copy of babydflorida 2012 110

IMG_1057IMG_1659Teagan Baugh (14)cmas2009-3baby teagan3rd Birthday

Ok I could go on for days – and I didn’t even get into the ones with my mom or my sisters……Each one has a story behind it too.   That’s what I love about pictures they take you back to what was happening when the picture was taken.

So I’m just sitting here enjoying my pictures this first day of Childhood Cancer Awareness Month.  Why?  Because our family was one of the lucky ones.  And there isn’t a day that goes by that I don’t remember that.  And when all the feelings of having a five-year old who had a brain tumor surface again this time of year this is my comfort zone.

So as I’m sitting here surrounded by my best pictures, I’m listening to music (it’s easier to write when I can’t here “MOM!!” 15 times – I’m sure they are fine – I don’t smell smoke so they haven’t set the house on fire – yet).  And one of my favorite songs starts playing that fits the blog:

In My Life – The Beatles.

So now I’m playing all my favorite tunes…. Which I’m going to list for you also.  Take a few minutes on YouTube or iTunes and have a listen to my playlist.  No it’s not new music at all – well some have been re-done by new artists.  Several of my favorite songs were written and popular well before I was born.  It’s an eclectic mix…..

In My Life – The Beatles–  This started it off

Love Lifts Us Up – Joe Cocker & Jennifer Warnes — Who doesn’t love An Officer & A Gentleman?

A Pirate Looks at 40 – Jimmy Buffett —   “Occupational hazard is my occupation isn’t around”

Please Come To Boston – Kenny Chesney –Yes I know he didn’t sing it originally – but duh it’s Kenny Chesney

Let It Be – The Beatles — I love the Beatles

I Don’t Wanna Miss a Thing – Aerosmith — It’s a Dave thing – technically not “our song” but our song

Sweet Caroline – Neil Diamond — My first concert with my mom – and also Dave & I singing this at the top of our lungs in the truck early one morning.

Dancing Queen – ABBA — Teagan & I sing this (terribly) ever since she saw Mama Mia

Yellow Submarine – The Beatles — Dawson & sing this (also terribly) and he may not admit that anymore…..

Wanted Dead or Alive – Bon Jovi — My nephew rocks this out at karaoke

Rocky Top – John Denver — My sister attempts to kill me by making me “clog” when this song is played – it’s a long song to clog too

From This Moment – Shania Twain — This is Dawson’s song – I heard it on the way home from the hospital when he was a baby

Your Song – Elton John —-This is Teagan’s song – I heard it when she was a few days old

(Yes – they both hate their songs!)

And my number one favorite song of all time:

Imagine – John Lennon                                                                 Yeah……..

The thing about cancer……….

sept2013

The thing about cancer is…….. you can’t “cure” it.  With all the exposure I’ve had to cancer in the last 7 and half years of my life that is the one thing I’ve come to begrudgingly accept.  Yes I’ve bought the shirts and signs and ribbons that say “hope for a cure” etc….  That was then.  This is now.

Why can’t you cure it? The better question is why have researchers spent the better part of 50 years trying to cure it?  IT CAN’T BE CURED.  It can’t be cured for one very simple fact:  Cancer is caused by changes in a person’s DNA.  We can’t “cure” our DNA.  Well actually, we probably can, but we probably shouldn’t.

Yes there are definitions out there that explain things like abnormal cell growth, rapid abnormal cell growth, abnormal division of cells etc….. But the one thing you can’t change in all those definitions is that those cells that are growing and invading and abnormally dividing and changing are already inside of us from birth.

Yes I know there are lists of carcinogens – things that researchers have determined can be responsible for cancer.  Or more specifically things outside of our body that can cause a cell to start being abnormal and dividing in ways it isn’t supposed to.  But (there’s always a but) even the known carcinogens don’t “cause” cancer – because there other factors like length of exposure, intensity of exposure and….. GENETIC MAKEUP.  Not to mention that some of the things on the list are hormones our body makes naturally (like estrogen and progesterone) and just about every chemotherapy medicine used to treat cancer is also on the list of known carcinogens that can cause cancer.  That makes sense right?  Oh yeah and estrogen and progesterone can help prevent one type of cancer but can also “cause” another type of cancer.

My opinion about cancer changed radically about a year ago – with 2 reports that were being splashed all over social media and all the news-tainment programs.  The first was about cell phones and brain tumors.  If you want to watch a mother who has a child with a brain tumor come completely unglued please bring up the fact that cell phones cause brain tumors.  The second was that American soccer players are getting cancer from the turf fields they play on.  You know the turf type fields they have in most suburban high schools these days – something about the rubber and synthetic grass.  It was cleverly devised with numbers and statistics – it affects goal keepers more than other players – and in all they accounted for 38 players (34 of them goal keepers) with some type of cancer.  38 players…. Nationwide.  By the way there are over 14 million soccer players (youth and adult) in the United States.  I’ll be honest I can’t even do the math to figure out the percentage there because it would involve a decimal point a lot of zeros but I’m sure you get my point.  However everyone I know saw that story and wanted to show it to me with the assumption I wouldn’t let Dawson play soccer anymore because it upped his risk of cancer.

Everyday 43 kids are diagnosed with cancer (this statistic is up from 37 when Teagan was diagnosed).  I’d say Dawson has better random odds of being one of those 43 kids than one of the 38 soccer players that developed cancer.  But the thing is… nobody knows.  It’s like a game of Russian Roulette with DNA.  I will guarantee you that not one of the 43 children diagnosed with cancer today has ever smoked 2 packs of cigarettes a day, used a cell phone excessively, played with asbestos insulation, ate too much of something or too little of something else, drank or didn’t drink coffee, wine, beer or tea, worked night shift (how many of you know that increases your risk of cancer?) or had prolonged contact with chemicals that have names as long as a sentence.

Did I happen to see an article today that said something to the effect of “25 ways to help prevent developing breast cancer?”  Yes.  Did it piss me off?  Yes.  Why?  Because working out 20 minutes a day and eating apples and avocados and cutting out caffeine are not going to prevent me from getting breast cancer.  Not when my risk increases 25% because my mom has breast cancer – and for the specific type of breast cancer she has my risk also increases another 20% because I’m half Hispanic.  So with those genetic odds working against me I have little need to worry about being overweight, working night shift, and the amount of caffeine I ingest.

There isn’t a cure for cancer.  There really never will be.  They may come up with better treatments – which I hope for daily because the current ones will kill you as easily as the cancer will.  And I’m sure if scientists can genetically alter an orange to taste better or be juicier they can also genetically alter an unborn child to prevent them from genetic mutations that cause cancer.  But then you get into all of the tangled ethical questions when you can control genes – you control race, height, eye color, hair color – and someone somewhere would ultimately try to use this information for evil instead of good.  Because some people just suck like that.

Cancer sucks.  There is nothing about it that doesn’t suck.  The treatment, the pain, the exhaustion, the life altering changes it makes to your body…. They all suck.  Worst of all is when (if) the cancer finally takes over more of your body than the doctors and medicine can control.  This is the part I’m at with my mom.  And it’s the suckiest part I’ve ever seen.

So the thing about cancer is……………

It sucks.

No matter which way you look at it.

Side Effects

So it’s May. It’s the very last day of May. How many times this month have I reminded anyone that it’s Brain Tumor Awareness Month? Zero. Zilch. Nada

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It’s not that I forgot. Trust me I have thought about it a lot this month. But I haven’t been inspired to jump on my shrinking soapbox and shout (or type very loudly on various forms of social media). And it was bothering me, but earlier this week I figured out why I hadn’t been inspired to remind everyone that it’s Brain Tumor Awareness month and brain tumors are bad and they change peoples’ lives in ways too hard to explain. The reason is just that. First, everyone knows brain tumors are bad. Most people when you tell them someone has a brain tumor that say, “Oh my God! That’s terrible.” Most people assume (like I did for about 14 terrifying months) that everyone who has a brain tumor will die. Second, if you understand that brain tumors are bad – logically you have to come to the conclusion that people who have brain tumors have their lives drastically altered.
It’s a no brainer. Pun intended although it’s really not that great of a pun.
But for me it’s even more than that. I want to be one of those parents who takes the soapbox with me everywhere and launches websites and social media campaigns and raises money to “make a difference.” I really want to be that parent. But it’s not that easy. Because for me to get on that soapbox I have to relive 14 terrifying months of my life. And there’s a big part of me, a selfish part of me that doesn’t want to re-live that.

I’m not sure how some people do it.  Like Liz and Jay Scott who run Alex’s Lemonade Stand Foundation.  Their daughter Alex was diagnosed in 1996 with neuroblastoma at the age of 1.  At the age of 4 she told her mom she wanted to have a lemonade stand to raise money for kids like her – she made $2000.  In 2004 when Alex died at the age of 8 she had raised 1 million dollars for cancer research with her lemonade stands and now her parents and siblings run one of the largest foundations to provide funding for childhood cancer families and for cancer research.  I just can’t imagine how her parents have gotten up out of bed for the last 10 years let alone continued to campaign for childhood cancer – but the do.  I admire them.

I aspire to be like them.
Maybe someday soon I will get my stuff together and do something monumental. Unfortunately it’s not today. Today I noticed something I hadn’t seen in a while, but one of those things that takes me back to 2007 in a heartbeat. Teagan was getting fitted for her bridesmaid dress for my nieces wedding and when she was changing I saw the 2 inch scar just under her bra line (she’d be embarrassed if she knew I told everyone on my blog she was wearing a bra….). The scar that was so carefully placed by a surgeon with the explanation that when she went to prom or got married he wanted her to be able to wear a strapless dress without a scar near her clavicle. The scar left behind from her “button” which was a port for easy access for chemo and blood draws. The same quirky surgeon who placed the “button” also removed it and gave it to us in a jar and suggested one day she might want to make a necklace out of it. We have not made a necklace.
But that’s all it took, seeing that scar and I was back in 2007. And it’s not even that big or noticeable of a scar. Not like the giant one on her left arm that runs from her elbow to her wrist – put in place by a not so careful surgeon who wasn’t nearly as concerned about her prom or wedding day and left behind that large scar that did very little to improve her arm. Then she turned around to show the seamstress the back of the dress and there were the 2 other scars on the back of her knee and ankle – placed by a cheery pediatric surgeon who helped her walk better. Thank God we didn’t pull her hair up so I could see the S-shaped scar just over her right ear. That’s the big one, also carefully placed along her hairline so it doesn’t show, by a very careful surgeon who saved her life.
Those are the side effects of cancer. The tumor may go away but the side effects are always there. And we live and deal with those side effects every day. And maybe one day I will get past the side effects and put my big girl panties on and campaign like I always say I want to.
But unfortunately it’s not today.
Today I’m again telling Teagan she really needs to reconsider having a zipper tattooed along the scar on her left arm when she turns 18. I’m very lucky. She has that ever lasting sunny disposition to handle her situation. Maybe I can talk her into a nice rose vine or something other than a zipper before she turns 18.

I see those billboards all the time that say “My Scar Means….” and then gives some explanation of what the person pictured can do now that they had surgery.  For Teagan her scars mean she survived – we survived.  And that means more than standing on my soapbox any day.

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We ourselves feel that what we are doing is just a drop in the ocean. But the ocean would be less because of that missing drop. ~Mother Teresa

Today, as I am writing my last blog in the “It’s not a tuumaah” series, thirty-six families around the United States are finding out one of their children has cancer.  Seven of those children will not survive.  Thirty six families will have stories just like ours to tell in five years.  In the past five years I’ve read many other stories like ours.  Oddly, or sadly, they are all similar to ours with lows and highs and fear and hope.  I wonder about the other thirty-five families whose lives changed on September 7th, 2007.  Did their children have brain tumors or leukemia or lymphoma?  Did they have surgeries and chemo and spend 18 months of their lives bouncing around hospitals and doctors and therapy sessions?  Do those moms have the same feelings I do?

Last summer Teagan’s beloved hamster, Danielle, died.  I kind of knew this was coming as the once very active hamster was getting slower and less and less active.  I probably should have told her that hamsters only live 2-3 years and since we got the hamster from our neighbor Bri about mid-way through the life span it wouldn’t live very long.  The day she found Danielle she came running to me to tell me something was wrong with the hamster.  And when Dave and I told her that Danielle was dead she burst into inconsolable tears.  I was hugging her and through her sobs she said “If I was a better mommy this wouldn’t have happened.”  Dave and I reassured her that she was a good hamster mommy and that she had done nothing wrong.  Eventually she settled down and she and Dave buried Danielle in our yard in a shoebox.   Later that night Dave found me sitting in the dark on the bathroom floor, crying.  Those words, “If I were a better mommy this wouldn’t have happened,” kept replaying in my head.  No matter how many health professionals or books or internet articles tell you that as a parent it’s not your fault and you did nothing wrong as a parent to cause your child’s cancer you can’t get that nagging feeling out of your head.

With the exception of the last 30 days, I don’t talk about what our family has been through in the past.  Typically my days are packed with trying to manage sports schedules, school schedules, checkbooks and figuring out what to cook for dinner.  Not unlike any other mom in America.  Usually, on a daily basis, I don’t relive the myriad of emotions that having a 10-year-old cancer survivor invokes.  There are triggers here and there that pop up but not every day.  But they are still there and they don’t go away.  And even though we’ve graduated to MRI’s and oncology checks every 6 months instead of 3 I still get anxious the day of the appointment.  And then there’s the long-term effects and possibility of other health issues (in addition to the left-sided hemiparesis) to watch for and worry about.

But most of all there’s Teagan.  She has survived the past five years with the grace and humility of someone twice her age.  I’m more than likely one of the “glass half empty” type people and I have found myself following her positive lead more than once.  That’s not to say she hasn’t gotten frustrated or angry or sad about having a brain tumor and all the treatments and not being able to use her left hand — she has.  But she doesn’t focus on the bad feelings, and you only hear the bad feelings once in while and only when she’s really tired.  What she focuses on is just being a kid.  Playing video games and soccer and getting into water gun fights with all the kids in the neighborhood.  Even now, as she’s reading over my shoulder she’s making jokes about brain tumors and doing some of her best voice impressions.  Last week after she had surgery to try to help her left arm she was in the recovery room and had all of us laughing so hard we had tears coming to our eyes.  She’s a nut.  I truly see her doing stand up comedy one day.  So you see how it’s hard to be the “glass half empty” person when she’s around?

Well the last 30 days has been my drop in the ocean.  I know from some of the comments I’ve received that I have made a difference to some people and that makes me happy.  But now I’m very pleased to be able to go back to blogging the sarcastic suburban soccer mom rants that have yet to make me famous.  Thank you for reading and supporting Childhood Cancer Awareness Month.  Now bring on Pink October.

I don’t need easy. I just need possible. ~ Bethany Hamilton

In 2003, 13 year old Bethany Hamilton was attacked by 14 foot Tiger Shark while she was surfing near her home in Hawaii. She lost her left arm just below the shoulder, but survived the shark attack.

In 2008, 5 year old Teagan Baughn was walking around Hinkle Field House in Indianapolis while her brother was at baseball camp when she saw a “PASS IT ON” poster of Bethany Hamilton. It shows a picture of Bethany in a blue tank top holding her surfboard with a giant shark mouth shaped chunk missing and it said “Me Quit? Never!”

“Mommy, that girl on the poster doesn’t have an arm.” She said.

“No, she was surfing and a shark attacked and bit her arm.” I replied.

“Does she still do surfing?” She asked.

“Yes.” I said.

“Well if she can surf with one arm, I can do stuff too ‘cause I still have my arm.” She said.

“Yes, you can.” I said.

That was all she needed to know. From that point on, in her mind, she could do whatever she wanted to even if her left arm didn’t work properly. Because the girl on the poster didn’t even have a left arm and she could still surf. So softball, soccer, roller skating, swimming, riding scooters – those things became do-able. No matter how complicated, or how much modification had to made so she could do them – she did them. And she still does them — with the exception of softball because the girls have gotten a lot bigger and can hit a lot harder and she still isn’t great with catching and throwing one-handed – that was a mom rule out for safety. And a highly unpopular mom rule I might add. She has bugged me non-stop this year to go back to gymnastics because her friend Savannah can do 1-handed cartwheels.

We’ve told her time and time again she doesn’t have to play sports if she doesn’t want to. We’re always afraid she’s trying to live up to brother. But she keeps bringing up things she wants to do or to try. This summer Dr. Goodman said just to let her keep doing whatever she wanted to do. She suggested that a lot of brain tumor kids do martial arts. With Teagan, that frightens me. I suggested swimming, unless she swims out of her lane there are no other kids to injure.

We tried last year to read the “Soul Surfer” book, but it’s a little out of her reading range. And we’ve watched the “Soul Surfer” movie. She will tell you she likes the movie but it’s scary. She always says the shark part is what scares her the most but I catch her crying here and there – like when Bethany pulls the left arm off her Barbie Doll. It really is an inspiring story but it’s one of those that triggers a lot of emotions. There have been some movies and books I just refuse to watch or read because the slightest thing can trigger an avalanche of emotions.

Teagan has never forgotten that poster in Hinkle Field House. I think if nothing else it gave her hope that despite her disability she could do the things she wanted to do.

About a month ago, completely out of the blue, she told me she wanted to learn how to ride a horse and go surfing. I told her she could talk to her aunt about riding horses. And one evening I picked her up from my sister’s house and she told me all about riding Sierra (I thought she’d forget about it, or she was joking). When I asked her why she passed on surfing lessons when we were on vacation she said it was because she thought she would have to go out in the really deep water – she didn’t know they did the lessons close to shore. Then she casually mentioned she might be afraid of sharks but she still wanted to surf.

Surfing…. Swimming…. Soccer… Horseback Riding …. Karate (gulp)…

She’s wants to do them all. And, again, she keeps asking about going to gymnastics.

There’s no stopping her. And that’s a good thing. All because she saw a girl with no left arm who surfed one-handed.

The poster…..

Bethany Hamilton now age 22

 

One must not let oneself be overwhelmed by sadness. ~Jaqueline Kennedy

I had no ideas for my blog tonight.  There are probably things I could share about what “life-after-chemo” has been like, but like I said yesterday it has been a bumpy tumble down and I’m not in a particularly over-sharing mood.  I have to admit that reliving all of these things this past month has been harder than I thought.  There are so many feelings to sort through – and sometimes 5 or 6 of them fly by in one day.  Guilt, Fear, Sadness, Happiness, Anger, Loneliness (that one is kinda hard to explain), Hopeful, Hopeless, Anxious, Proud, Grateful and Overwhelmed.  It’s been a lot to go through the past 27 days.

So since I’m not in a oversharing mood, and I’ve run out of Caring Bridge pages to refer to.  I found a few other references from back then and there are things I forgot along the way.  So that’s what I’ll share tonight.  Some are oddities, some are things I really had forgotten, some are silly things that I still do today….

  • Day 1 at the hospital:  When you walk in the lobby at PMCH to your right is a large wall hanging with lights, it looks pretty but the best part is there are four floor tiles that you can step on that make noise and the lights then correspond to the noise.  One is birds chirping, one is waves crashing, one is some kind of happy/sunny thing and the last one is a crack of thunder with a bright flash of light followed by a grumble of more thunder.  As I was leaving on Day 1 I unknowingly stepped on a trigger floor tile …. yep thunder & lightning.  And to this day…. I only step on the thunder & lightning floor tile.
  • Day 2 at the hospital:  I discovered the fountains.  There is one right by the door when you walk in the lobby.  It’s blue/glassy/artsy looking.  When you toss money into it there is a motion senor that sets off what sounds like a dolphin trill/whistle.  I passed it everyday for 10 days and never went past it without tossing a quarter in and saying my “wish” — “Please let my daughter be OK.”  There’s a larger one in the main part of the hospital, the one Teagan calls the fountain room, with the bronze animals and nuns.  I started pitching quarters in it too.  I walked around with at least $5 in quarters every day.
  • Day 6 in hospital:  Actually this occurred at night.  About 1130-midnight as I was tossing and turning on the futon/couch thing that parents sleep on Teagan sat straight up in bed from a deep sleep and asked “Mommy do you believe in God?”  That freaked me out.  What made her sit up in the middle of the night and ask that?  Was it because we were in a Catholic Hospital full of pictures of nuns and a crucifix over the door?  Was it because people kept saying they were praying for us?  Was it because one of the chaplains (or maybe a nun… hard telling because they don’t wear the typical black “Sound of Music” type habit anymore) had visited earlier?  I don’t know but after she went back to sleep me and God had a lengthy conversation. There are a lot of questions at first… for God, for doctors …..and not a lot of answers. Answers come in time and they are not on your time schedule.
  • Day 7 at the hospital:  Dave stayed the night with her after her surgery.  We rotated every night and he just lucked out that he drew surgery night.  Dawson and I went home, I’m sure we stopped somewhere and ate dinner because his love of all fast food blossomed for the 10 days we were in the hospital.  Dawson brushed his teeth and climbed in bed.  I sat up awake.  At about 1130 I decided to watch a movie to try to help me go to sleep.  I laughed as I picked up 50 First Dates and popped in the DVD player.  That movie, for whatever reason, made me feel better about everything.  Even though it was fiction (far-fetched fiction at that) it was about a girl with a traumatic brain injury who was living a “normal” life.  The thing that sucked me in was the scar they painted on Drew Barrymore’s head was almost identical to Teagan’s.
  • Day ??? – sometime during chemo:  We started noticing her hair was “thinning out”.  Actually giant clumps of hair were missing in spots all over her head. One day we were doing laundry and Dave told me to come to the dryer.  You could pick handfuls of her hair off the ribs in the dryer and then again out of the lint filter.  That was the moment when I understood why I had Mrs. Simmons for Spanish class in high school.  Her son had passed away from leukemia the year before I was in her class but she still would speak of him often.  One day she told us that the doctors don’t tell you that the hair comes out in clumps.  She would find a clump on his pillow or stuck to his shirt.  She was who I thought of as I was picking my daughter’s hair out of the dryer.
  • Day ??? in May:  We shaved what was left of her hair completely off.  There was no way to make the remaining strands look good even if we cut it short.  So it all came off.  And she was OK with it – the day we did it.  Two days later…. she was completely inconsolable for hours because he hair was gone.  And to this day she throws a GIANT hissy fit if we mention getting her hair cut and she absolutely REFUSES to get anything more than a trim.  Her hair is just past shoulder length right now.

Tomorrow:……. yes I thought of something….. Soul Surfing 🙂