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. 


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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.

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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.)