Happy 4th Birthday, Andrew!

Today is Andrew's 4th birthday! 

It is hard to believe it has been a year since the last one.   Last year Andrew and I spent the day in the clinic.  He received chemo.  I cried my eyes out.

This past Sunday we celebrated with a party. We rented a jump house and he invited his friends.  He was in charge of a portion of the guest list, and his energy could not be contained.  He raced through the house, from activity to activity, from friend to friend, and loved every minute of it.

As I consider the four years of his life, I realize that while I have cried, and been anxious, and ranted, and screamed, he has lived in joy and peace. Ignorance, as they say, has been his bliss. It has also been a huge blessing.

I often remind myself that I have six little eyes watching my every move.  They watch how I behave in difficult situations, express joy, cope with stress, handle disappointment, show love, and live my day-to-day life.  It is a huge responsibility, and I often wish I did a better job, for their sake.

However, over the last year and half, my eyes have watched Andrew live his life.  I have watched him struggle, and cope, and live each day to the fullest, despite difficult circumstances.  I have learned a lot from him.

Things like:

• Never pass up a puddle.
• Jump! Often. Jump! Everywhere!
• Tackle hard.
• Squeeze tightly.
• Ask to be held when you need it.
• Get down when you're ready.
• Defend your brothers, even when you are the smallest one in the room.
• When it hurts to dance, sway.  When it hurts to sing, mouth the words. But never stop moving to the music.
• Remember your friends' favorite things, and their favorite colors.
• Show concern for others, even when you are in pain yourself.
• Climb trees, even when it scares your mother.
• Push all the buttons, at least once.
• Smile. At everyone.
• Keep on running, even when you are in last place.
• A loud roar will always get a reaction. 
• Look past the smell and the sight of the homeless, and see the face of Jesus.
• As often as you can, and whenever you get the chance, grab two supportive hands (or one that's extra strong), lift up your feet, and fly.

Happy Birthday Andrew.  I love you.

 

Hello out there

I haven't even visited my blog since my last entry!! I haven't written in my journal with a pen. I needed (and probably still need) time to just sit with everything.  I've also been reading books like a maniac and spending time with my boys.

But, I wanted to let you know that Andrew's most recent scans were clean.   I spent the whole day a complete nervous wreck, but everything was okay.  So hooray!!

Here is a recent picture:

We had some family pictures taken, and these were my favorites:

I have missed visiting you all, and I hope you are doing well.  Thank you so much for your prayers.

love,

Julie

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!

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.)


:)



Waiting...

Today was the day. The day I have been dreading for three months.  The day that needed to happen before I could commit to flying to New York with John (him for work, me for fun).  The day that needed to happen before I signed Andrew up for preschool.  The day which has been giving me nightmares for more than a week.

Today was the day Andrew got his three month scans.  Scans which will be repeated every three months, hopefully for four years.  And then every six months for one year.  And then once a year for the rest of his life.  If all goes well.

At six a.m, I woke up before my alarm went off.  It was one of those restless nights that made me wonder if I slept at all.  I ate my breakfast, dragged Andrew out of bed, put him in his carseat (still dressed in his jammies) and broke the news:  "We have to go to the doctors' this morning.  They don't want you to eat anything until you are done, but I have a purse full of granola bars and juice boxes. I have your clothes and shoes in my bag."  He protested and cried a bit, but then fell silent for the rest of the drive.

Carrying Andrew in my arms, I made my way to the MRI waiting room.  The nurse walked in, almost immediately, and warned me, "The last MRI was found to be positive, so the radiologist is still talking with the parents.  We are running late."  I felt my whole body jerk back in shock.  Horrible memories flooded in.  My thoughts flew to the parents sitting on the other side of the door.

I wanted out of there. Now. My lungs started to tighten and take in smaller, stunted breaths.

I tried not to let my mind wander into the dangerous jungles of  "what if," but I was not very successful.  "If" this went bad, I pictured myself hiding in my bedroom under the covers in my room, loaded up on prescription drugs and oblivious to the world.  Yes, that is what I would do.

But WAIT.  I couldn't.  I have three boys and a husband.  I have to be there for Andrew.  It could not be that easy.  It would have to be a vivisection.  I would be ripped apart, while still breathing, and still awake.  My heart, soul and body would be dissected, and I would have to be awake and alive for all of it. 

My chest was pounding.

As my mind wandered, I noticed a little girl (about 8) across from me in a chair similar to mine, with light blue cushions.   Her mom was on the phone, several seats away, with her back turned, chatting to someone about how her husband "has been flirting on Facebook and she just won't take it anymore" and on and on.  The little girl's brother, about 2, was sitting in a stroller across from his sister.  The little girl smirked as she poked, teased, and made him cry.  I started to move forward in my seat, feeling like I might need to intervene (because her mother was oblivious to her son's cries and her daughter's bullying), and then I noticed the other side of the little girl's face.  A huge skin graft extended from the middle of her face all the way down her neck.  Her jaw was disfigured, and the scar across her cheek extended from her mouth to her ear.  Where are you God! My heart screamed.  I had to remind myself to breathe.

At this point, the nurse sent us upstairs for a chest x-ray.   After taking the elevator, and "following the lizard tiles," I entered another waiting room, and found another blue-cushioned seat.  My eyes quickly scanned my surroundings and discovered a little girl, no more than two, standing in the opposite corner of the room.  Pink and frilly and bald.  In my own corner, I heard the cry of a newborn baby and watched the concern on his mother's face as she held him close.

I thought of Japan and the holocaust and places worse than this and I felt food in my belly and clothes on my back and I saw people smile and I tried to convince myself that I was not in hell.

A nurse arrived to take us to the chest x-ray and Andrew cooperated, beautifully.  We headed back downstairs to the MRI room.   

During the last set of scans, the anesthesiologist wouldn't let me come with Andrew and as I handed him off to a strange woman in a white coat, Andrew screeched, all the way down the hall, "Where are you Mommy?! Where are you Mommy?!"   He spent the rest of the day asking me, "Why did you leave me?  Where did you go?" So this time, I let them know that I was coming in.  There was no option. They let me (and were actually very sweet).

While I held him, the doctor gave him medicine through his port-a-cath. He fell asleep, and I retreated to the waiting room, where I managed to read bits of my book, keep my eyes focused downward, and wait, again.

"How do these nurses do it?" I wondered to myself.  "Come to this hell everyday.  How do they do it?" And I found myself understanding and resenting the callousness that HAS to build up in order to do this work.

Andrew woke up, eventually.  He ate three granola bars and two juice boxes and held me tight as we made our way out into the wonderful, beautiful fresh air, where the ducks were sitting in the grass and the sky was a brilliant blue.

We drove home together, talking every so often, thankful to be able to escape from that place of pain and horror. 

And then we got home, to the worst waiting of all.  I expected to agonize all night and partly into tomorrow.

But around five p.m this evening, my nurse called to say that everything was clear.  All clear.

Vibrance!

vibrance

vi·brant (vbrnt)

a. Pulsing with energy or activity

b. Vigorous, lively, and vital

c. Relatively high on the scale of brightness: a vibrant hue

For man, as for flower and beast and bird,

the supreme triumph is to be most vividly, most perfectly alive.

D. H. Lawrence

THOSE!!

Andrew: "I hate those.  I want to rip them down."

Me:  "What? What do you hate?"

Andrew:  "THOSE!" pointing to the kitchen wall, where all of the proud homework, drawings, and school accolades are pasted. 

I scan the offensive material.  Sammy's name is on half of them.  Aaron's name is on the other half.  There is even one up there for me.

Andrew:  "I want to rip them down!"

Me:  "Do you want to have some pictures up there too?  Do you want to go to preschool too? And make some pictures?"

Andrew: (silence)

Me:  "Do you want to draw some pictures right now, and put them up there?"

Andrew:  "How do they color so good?  I can't color."

Me: "They are older than you buddy! They've had more practice. You color great!"

Andrew:  "No.  I don't."

Me:  "You do!  But is there something else you want me to put up there?"

Andrew: "no."

I am the first born of three.  I never even considered that Andrew would feel inferior, or less than, or judge himself by his brothers abilities, at least, not yet.  (He has also been jumping off playground structures, because his brothers are doing it and he is trying to prove himself  "big"!  He actually hurt his foot last weekend and is still slightly limping.)

I think this is where I am supposed to post my solution to this issue, but I'm not sure what the solution is. I will add some pictures of him to the collage, and continue to encourage him to color (despite his perceived deficiencies(!) ) and tape whatever he does to the kitchen wall.  But I'm wondering if I should do something more?

I was considering putting up a big potty training chart with his name on it, and giving him a sticker to put up every time he uses it, you know, kill two birds with one stone... because, yes, we are still working on that.   I suggested it, but he didn't act very excited (surprise!). 

Any suggestions from you younger siblings out there?

Did you hate "Those!" too?

Youth

This weekend we went to a street fair. 

The boys watched in awe

and skipped rocks

 (well, they tried).

They tasted funnel cakes

(and liked them)

and held on tight

to the biggest boy of all.

"You're never too old to become younger."

Mae West

Lemonade

"I wanna help!" he says,

and without waiting for a response,

he comes running.

Wrestling a chair from the table,

he pushes it

(like I hate)

across the soft wood floor.

I hold my critical breath

and watch.

Smiling at his earnest determination,

I grit my teeth at the screeching (and scraping)

coming toward me.

Banging into the cabinets,

he parks the heavy piece of metal 

against the counter.

He scrambles up, looks down,

and surveys the lemons already sliced

in two.

Despite his prop

I still stand taller
and cannot resist
kissing
his blond little head.

"Which one can I do?" he asks.

I give him half a lemon

and he presses down

with all his strength,

and peers over the side,

to watch it happen.

Voila!

Proud,

he sticks his finger in the juice he made,
licks it,
and shudders.

"Silly!" I say. "It needs sugar!"
His smile twinkles,
as if he knew that.

I lean over
and smooch
his swirl of blond
again.

(see all that sweet hair!)

And again.

And again.

It is often in the unexpected,
simple moments of life
when I notice
the sweetest blessings.

Thumpthump

Thumpthump Thumpthump Thumpthump Thumpthump

9:37

at night.

On the treadmill. 

 My workout clothes have been on all day,

waiting for this moment.

This moment of release and relief.


Thumpthump Thumpthump Thumpthump Thumpthump

I'm not taking it for granted.

This life.

These legs.

This heart.

These lungs.

I can run.

I can breathe.

Thumpthump Thumpthump Thumpthump Thumpthump

Grateful for this day

Where the balls seemed to stay in the air.

Where my loved ones were kept safe.

Where my heart remained in hope.

Where we ate ice cream

and jumped off jungle gyms.

Thumpthump Thumpthump Thumpthump Thumpthump

A day

where a simple quote changed my thinking

about complex things.

Where my one-person philosophy of religion class

spun me

once again in torturous circles

but

I tried to quiet it.

To grab

onto to what I can't see

And can't understand.

To have faith.

Try

to

have

Faith.

Thumpthump Thumpthump Thumpthump Thumpthump

The soothing pounding

The hard-earned sweat slipping

down my cheeks.

Like tears.

I pray.

I pray.

I pray.

Thumpthump Thumpthump Thumpthump Thumpthump.

3.07

miles.

I stop.

For today.

Thump Thump Thump Thump Thump