One Year Later

April 17.  Last year, on this day, around this time, my Dad, my friend, and I were sitting in the ER with Andrew, waiting for a CT scan.  The nurses and techs tried to convince us that he could manage without medication, but, being a typical two-year-old, Andrew convinced us that he could not.  So they gave him a sedative of some kind, but instead of sedating him, it made him completely uncomfortable in his own skin.  He was screaming, and crying and didn't know whether to hug me or kick me.  We spent that night, and almost every night of the next two weeks in the hospital.

One year. I can hardly write this now without tears. I have been considering this day for almost a week; wondering how to put my thoughts and feelings into words. There is too much...

Today we let Andrew eat all the ice cream he wanted, and counted our blessings.

Today I sat in my room, by myself, with some sad music and a journal.

It has been a long, very long, year. An year of horror, and pain, and suffering, and heartbreak, and anger, and disgust, and grief.

It has been a humbling year; a year of being "patient's mother" and sitting completely vulnerable and fragile in doctors' offices, resenting their very existence in my life, and wanting to throw things, and scream, and cry, and rant, and rage, but feigning smiles instead. 

It has been a year of soul-searching and God-questioning.

But it has also been a year of overcoming. Of noticing blessings and learning to count them. Of trying to accept kindness and help from steadfast friends, sweet nurses, and thoughtful doctors. Of watching my son continue to love life, and play, and run, and jump off couches singing the Star Wars theme song, inspite of everything.  It has been a year where we pulled together as a family and survived.

I have learned to appreciate the gift of a normal day.  The gift of freedom.  The gift of health.  The gift of my children. The gift of life outside the hospital. 


****************
One year ago today, I woke up early and dressed in my workout clothes for the Pat Tillman 4.2 mile run at Arizona State University.  As I ran that morning, I daydreamed about many things...Pat Tillman's sacrifice, Sammy's frequent bloody noses, and a funeral my friend was attending, but Andrew never crossed my mind.

His eye had been looking strange for a few days, but I hadn't been overly worried about it.  I'm not sure how my mind suppressed that.  I'm not sure why I didn't consider possible reasons for its odd appearance. Denial?  too many distractions?  I don't know. 

Later the same day, we went to our friends' house for a belated birthday celebration for the men.  We had a family decathalon competition, where we competed in goofy events like "husbands bench pressing their wives," and the "javelin throw (with pool noodles)."  We had fun. "Team Taylor" won (a very narrow victory) and then we decided to go out to eat.

We chose the Olive Garden, and I sat next to Andrew on the booth side of the table.  I kept looking at his eye, feeling more and more worried.  While everyone was deciding what to eat, I asked my friend, a neurologist, to look at his eye.  "Does it look bulging to you?"  And, after a few seconds of looking, she agreed that it did, and she looked concerned.  John didn't notice anything.  But her husband also thought Andrew's eye looked strange.

Due to previous experiences with doctors, in which I was passed from one specialist to another while waiting weeks between tests, I decided to avoid all of that and go straight to the emergency room.  I forced down a few bites of breadsticks and salad, and left the restaurant.  As we drove, I knew that my life was about to change forever. 

I won't go into all of the horrific details of the night, but at the end of an evening of screaming, unsuccessful IV's, adverse reactions to medications, and finally a CT scan, I found myself standing next to my tearful friend, and my Dad (also a doctor), staring at a black and white picture of the dark circle that threatened my son's life.  John was at home with our two older boys.  I had to make a phone call.

And the nightmare of cranial surgery, and waiting for diagnosis, and shared rooms, and screaming roommates, and cancer, and chemo, and a nurse with a power trip, and a two month trip to Houston, and hell-on-earth began.

We were thankful to find that Andrew's cancer had a standard treatment regimen, and there was a great chance it would work.  But the regimen would be long, excruciating, and dangerous.

For a while, every where I looked, I saw and felt horror.  There were kind words and embraces from family and friends, and lots of meals, and flowers, and offers of babysitting, but the horror of that hospital and the cold you-are-a-number-not-a-name feeling was overwhelming. It felt like there was no escape.

That feeling continued for several dreadful months.  We were in the hospital almost every weekend.  Andrew was in pain almost every weekday.  I'm not sure how I ever slept, and I never made it through a day without tears. 

But over time, many beams of light made it through the heavy curtain.  Thanks to a friend's kind intervention, we made the decision to change hospitals, and nurses, and scenery. We were blessed by fervent prayers, amazing grandparents, a multitude of hats and get-well cards, sufficient finances, fun distractions, and kindness in many forms.  Andrew grew accustomed to the chemo treatments, and began to have only a few bad days each month.

Overall, Andrew endured 14 rounds of chemo (eight months).  Six weeks of radiation. A life-threatening infection. Three weeks of intravenous antibiotics.  And so far, two sets of post-treatment scans.

Today he is running around smiling and seems oblivious to all of it. 

We made it through.

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

Today:  I walk into Andrew's room, and I look around.  A painting he created in the children's hospital playroom is on the wall to my left.  Pictures drawn by his friends, young and old, are above his dresser.  Hats cover his walls.


I sit down in his red rocking chair and consider the future.  I am so terrified that we might be playing a game of tetherball, where we have pushed the ball away, only to be whacked in the head with it later.  I am constantly trying to figure out how to live my life.  I don't want to mope and worry, bracing for a possible blow, unable to enjoy today.  "Gotta let go and enjoy each moment," I chant to myself. It is difficult.

Once again, my thoughts turn to God. After spending a year praying and considering Him, I don't know if  I understand Him any better.   In fact, there is probably more of a wall between us. 

I am anxiously and grievously aware that He does not always intervene in the ways we hope (found this interesting).  While I am very familiar with Romans 6:23, emotionally, I still have a hard time grasping this concept, especially when it relates to children. I still ruminate and ruminate about it.   How can a merciful God watch this happen to anyone?  How does God watch this world spin around, with all of the horror and pain in it?  Why does a loving God allow us all to be tortured?  Despite a lifetime of theology classes, I just can't get my mind around it.

At the same time, I recognize that my life has been blessed by the love and presence of God.   Jesus has been in my life for as long as I can remember, and for that reason, I often take his presence for granted.  Despite my questions and rants, deep inside me is a solid belief that He loves me for who I am, flaws, insecurities, failings and all.   In Jesus, I have had a safe place to go with my rage, and my hate, and my despair, and my incredible anxiety.  I am still terrified and angry.  But I will keep coming to Him with all of it.

I will keep praying that he will cure my son, and never let this nightmare return.

*******

Tonight,  one year later, we spent our evening in the park, and then went out for ice cream.  I will go to sleep in my own bed, and Andrew will go to sleep in his. Tonight, I will thank God for bringing us through this year, and for allowing me to spend this day with my precious family.  I will thank God for my sweet boy, and his continued presence in my life.




(I'm going to take a blogging break now.  I'm not sure for how long, but I need one.  Thank you to all who have been reading and supporting.)

the devil's in the diapers

Sooo....the potty training continues.

I have suddenly become very interested and motivated in taking Andrew to the potty

 every. half. hour.

(The biggest reason happens around 3:30 each day,

right as we are leaving to pick up Aaron.)

Because, if it were left up to Andrew,

he would never step foot in the bathroom,

except maybe to "wash" his cars in the sink,

or color the toilet with markers

or talk to me.

I keep waiting for that interest to spark in him,

something to convince him that it would be much more pleasant

for him,

if he used the potty.

But so far...

nope.

I have tried bribes:

chocolate

yogurt

chocolate covered pretzels with pink sprinkles

stickers

yogurt with cherries on top....

(seriously)

None of that seems to be working.

So then I resort to competition (and shame, sigh).

"Don't you want to wear underwear before your baby cousin?

He is potty training too!"

This method is similarly ineffective.

So I try to make it kinda exciting

and encourage him to "pee on the trees"

and "water the flowers"

when we are outside.

And he does,

but only when I remind him...

I suppose I just need to wait for that, "click"

 in his own mind?

When he decides that he is done

and ready?

But for now,

it is excuses:

"The diaper made me do it. 

The diaper made me poop.

Really! It did!"

Those naughty diapers.

 (sigh)



(eating chocolate yogurt with cherries on top...)



I'm waiting for that magical

"I'm potty-trained now, Mommy!"

 moment.

And spending lots of time in the bathroom.

It will happen someday...

right?

 (And, while Andrew is outside "watering" them,

I have been practicing taking pictures of the newly bloomed flowers in my yard.)

Quick! a post before dinner

okay, so this will be quick. 

Want to get last week's 3 a.m. insanity off the blogroll, but I have to make something for dinner.  Soon.

This weekend, John took the boys camping in Sedona, only an hour away from Phoenix.  It snowed! In April! It hailed! It was cold!  John said they sat in the tent, during the day for six hours straight.  And they loved it.  They pretended they were going to climb Mt. Everest and were camping out at basecamp.  They played cards, watched movies, read books, told stories. 




This is the picture he texted me Saturday morning, to which I replied, "Come home!"
His phone battery conveniently died, just then.



This was supposed to be the spring boyscout camping event.  30 families had intended to come.   The first night (probably after reading the weather report), there were five.  The next morning, four drove away.  Yup, John stayed.  Later that day,  two more tents arrived.  John and the boys were the only ones to make it through the entire weekend.  John was very proud. 

(The laundry pile they brought home was ridiculous.  I will be washing these smelly things for the rest of the week!)

Andrew and I stayed home.  For two very good reasons (well, more, but here are two): 1.  I hate to be wet and cold (that is why I live in Arizona).  2. Six hours straight in a tent (I might prefer wet and cold).

Andrew and I were very happy at home watching movies, eating popcorn,  taking bubblebaths and staying warm.  I even put on my swimsuit and took the bubblebaths with him.

On Sunday, the boys came home and we had tacos and played Tug-o-War with some friends from our church.  Fun!  My team lost, and my back may be ruined for the next month, but I don't know, the laughs may have been worth it. When was the last time you played Tug-o-War? Probably too long ago. :)

Okay, dinner time!

Insom Nia

I've been cheated by you since I don’t know when

So I made up my mind, it must come to an end
Three a.m now, will I ever learn?
I don't know how, but I suddenly lose control
and a latte calls to my soul

Just one sip and I can hear my tongue sing
One more sip and I inhale the whole thing.

Ooooh Ooooh,

Insom Nia, here I go again
My my, counting lots of sheep, baaaaa
Insom Nia, does it show again
My my, how much sleep I've missed, yeah

Yes,  I'm awake and writin'
No,  the bed bu-ugs ain't bitin'
Why, why into Starbucks did I go?
Insom Nia, I'm a fool I know
My my, into Starbucks I did go.

I've been making some lists, all the things I should do
I've been staring at stars and the ceiling cracks too
When will you go? when can I please snore?
I think you know, that you won't be away too long
You know that I’m not that strong

Just one sip and I can hear my tongue sing
One more sip and I inhale the whole thing

Ooooh Ooooh,

Insom Nia, here I go again
My my, counting all the sheep, baaaaaa
Insom Nia, does it show again
My my, all the sleep I've missed, yeah

Yes, I'm awake and writin'
No, the bed bu-ugs aint bitin'
Why, why into Starbucks did I go?
Insom Nia, hear me when I say
Bye bye, leave me now, forever
Insom Nia, it's a game we play
Bye bye, please, let's mean forever

Insom Nia, here I go again
My my, counting all the sheep, baa
Insom Nia, does it show again
My my, all the sleep I've missed, yeah

Yes, I'm awake and writin'
No, the bed bu-ugs aint bitin'
Why, why into Starbucks did I go?
Insom Nia, now I really know
Lat-tes I can never let you go.

(What can I say...?  My brain is a scary place at 3 a.m.) :)

It's a bird...

Faster than a speeding bullet,

More powerful than a locomotive,

Able to leap tall buildings in a single bound,

It's a bird!

It's a plane!

(okay so I missed the plane)

It's Superman!

Superman, Man of Steel, Superman.

We haven't left the house all week without a costume. 

And, Andrew learned to ride his tricycle. 

Fun!

(except the part where I have to take off this one-piece costume every time he needs to use the bathroom...that part, not so fun.)


:)



Jesse and Me

That's me, in the yellow.  First grade, I think.  I ran my heart out here. And not because I loved running.

I was running for a cause. I had a message to get out. I may be a girl, but I am worthwhile!

Aren't I?

I thought that by proving that I was strong and fast, I could prove that I had value, like the boys.

Somewhere along the way, partly at Christian school and its overemphasis on gender differences, and partly due to my observant eyes, sensitive heart, and other, more complicated factors, I knew by first grade that being female was less than the best. I saw the boys tease the other boys for being "like a girl."   The school I attended constantly pressed the idea that girls could do this, but not that.  Stereotypes galore. It all hurt my heart.

So in first grade, on the day of the annual "Shar-a-thon" fundraiser for the school, I ran as fast and as long as I could. Donations were based on how many laps you ran, and I was determined to run more than any boy in the class. I ran circle after circle. Collected rubberband after rubberband (one for each lap). I was fueled by anger and determination. A need to prove "them" wrong.

A year or two later, counting the rubberbands.

Around the same time, I found a book in the school library; a book that reached into my heart and grabbed my soul. A biography of Jesse Owens.  Jesse Owens was a black man who won four gold medals in the 1936 Olympics in Berlin, in front of Hitler and the Nazi crowd.

 I. Loved. That.

I wanted to jump into the book and live that moment with him. I wanted to be there, and cheer him on.  I wanted to run next to him, or on his shoulders, or wherever.  I wanted to be a part of THAT. I read it over, and over, and over again.  I recorded myself reading the story on my 1970's tape player, and listened to the tape, repeatedly. I wanted to live out my revenge and glory through him.  I fantasized about having all of my teachers sitting in the stands. I wanted the cocky male principal there. I wanted the gun to go off. I wanted to win, and show them that I could beat the boys.




I ran 33 circles. I remember my parents were very proud and praised me. I don't know if I ran more than the boys. There wasn't much of an audience for a first-grade girl running in circles on a playground.  But my 33 laps didn't soothe what I thought it would. No one came up and said, "Wow! you are so fast! I was so wrong to think that little girls were slower than little boys."

Time after time I would try to impress, would feel a little glory, and then go home and plot my next impressive feat (in front of the teachers). Even beating all the boys in the P.E. 50 yard dash felt hollow.

I never knew this before, but in Germany, during the Nazi reign, Owens was permitted to stay in the same hotels as whites, and he was cheered by the German audience when he won. He even credits a German competitor for giving him a tip that helped him win the Long Jump.  In contrast, when he participated in the New York ticker-tape parade in his honor, he had to ride the freight elevator at the Waldorf-Astoria to reach his reception. Owens later stated, "Hitler didn't snub me--it was FDR who snubbed me. The president didn't even send me a telegram." Amazing. Ridiculous.

For a while I could still beat the boys.  I could beat them at arm strength, and running, and spelling tests.  But as puberty hit, the hopelessness of continuing to compete hit me, and I started to feel greatly inferior.  My school still propagated rigid gender roles, and I felt a simmering fire in my belly at all times.

I still had moments of "glory," and continued to be strong and could shockingly beat many of the boys at arm wrestling way into high school (and even college). It felt great, but still hollow.

Thankfully, I married a man who could handle my strength, and was not threatened by it.

As I have matured, I have realized that strength, and power, and might are not as important as I believed. I have learned to embrace the beautiful benefits of being female. I have learned that character, and grace, and kindness, and honesty, are all so much more important.  I love the privilege of being a mom, the joys of being female, and the ability to stay home with my children.

But I have to admit that I still enjoy "beating the boys" whenever I can.  I still resent restrictive stereotypes.  I still love  Jesse Owens.