Easy (Happy Birthday Andrew!)

I was expecting you to be "easy."
An uneventful pregnancy. 
The third baby.
You were supposed to "pop right out."
But you didn't.

I was shocked
when the doctor said, "C-section."
With the cord
wrapped around your neck
three times,
you were ascending
rather than descending.
Perhaps you had a premonition about
this crazy world
you were about to enter.
We had no choice but to take you out
 "the hard way."

At 8:20 am, three years ago today,

I saw your sweet face for the first time.

I held you close to my heart,

swirling my fingers

on your head of peach fuzz.

I imagined your future,

and prayed for your protection.

I held your tiny body 

and was so grateful.

I marvelled at your 

long eyelashes.

You were beautiful.

Those first few days and nights were difficult for me.
At times I could hardly hold you because my body was in so much pain.
But you were a "good sleeper", and a "good eater."
You made it easier for me.

As you grew you became my little attachment.
My lap became your lap.
You wanted to be with me,
held by me,
and in my arms,
as often as possible.

You were my "easy" one. 
My easy sleeper,
my easy eater,
my easy-going,
easy-pleasing baby;
So strong, and so affectionate;
I had no worries.

Today, at 10:35 am,
we are at the hospital once again,
exactly three years later.

Five months ago

a doctor again

uttered shocking words.

As we sit here in the hospital,
I hold you close to my heart.

I swirl my fingers
on your head
(which has nary a smidge of peach fuzz).
I fear and hope for your future
and pray for your protection.
I hold your "big boy" body,
and am so grateful
that I can still can.
Today you lost your last,
long, marvelous eyelash.
But you are still so beautiful.

Sometimes when I pick you up, and look into your sweet, lashless eyes,
it causes me so much pain, I can hardly contain it.

My dear, loving, three-year-old child,
do you know how I adore you?
I would give anything to heal you.
I wish I could do it for you.
I wish I could carry your whole burden,
and not just the backpack for your fluids.

Your life has been difficult,
my "easy" child.
But you are handling the chemo,
and the hospital,
and the needles
with bravery and grace.

You continue on
with happiness,
energy,
joy,
excitement,
humor, and an
easy-going attitude.
I am in awe.


 

Happy Birthday my sweet one.

May you never spend another in the hospital.
I pray the circumstances of your life
may someday match the ease
with which you live it.















Andrew at the hospital today.
The nurses got him cupcakes and everyone sang
"Happy Birthday!"



 

9-26-10 Birthday party for Andrew.  Picture with my sister who made him a "King Boo" cake.




Flashback Wednesday

No.  It's not a meme.  Just my Wednesday.  Everything I did today sent me back to another time and place.

Tonight while I was helping Aaron with his homework, we were both lying in my bed.  His head was resting on my stomach while I quizzed him on his spelling words.  Suddenly I was in the basement bar of a pizza restaurant in Eagle Rock, California having regular contractions and telling John he would have to cancel his CPR class  scheduled for the next day...he now had other plans.  Remembering all of the emotions of that evening, I was suddenly tearing up, asking Aaron to spell "blind."  As I looked at his soft blond head, it was hard to believe that my biggest boy had once lived inside me, getting ready to emerge into this crazy new world.

For dinner I was desperate, so I pulled out some Olive Garden spaghetti that has probably been frozen for three months.  A generous friend from High School, who heard about Andrew (who I hadn't seen in 10 years) brought it to my house along with four other full plates, breadsticks, and salad. It was so much food it has taken a while to get through it all.  How did I make it through those first few weeks of hell?  I was completely numb and in shock.

Later as I was doing the dishes, "Bridge Over Troubled Water" came on my ipod.  I thought back to my teenage years when I was so depressed and socially awkward I could hardly stand myself.  And then I remembered the time when I was a social worker working in Riverside, California, checking in on three Vietnemese children in their Filipino foster home.  The foster mother was out running errands so I had to "deal" with the foster father whom I had never met before.  Somehow, between "how are you? my name is Julie" and "goodbye, I'll see you next week," I sang the whole Simon and Garfunkel tune with the aid of his Karaoke machine. Without my knowledge, he recorded it.  And played it back to every subsequent social worker who ever stepped foot into his home.  And I was their supervisor and supposed to be more professional and stuff.  OH MY. 

While I was pouring myself a Baileys over ice, the David Crowder band came on and suddenly I was transported back to Houston in the radiation waiting room, reading books, talking to (yelling at) God, wondering how in the hell this had happened to my sweet boy, and trying to keep myself from falling to the floor in convulsant sobs. 
So while uneventful, it has been an emotional evening.  I've been back and forth through so many places tonight.

But I think, overall, the lesson to take away from my night of reminiscing is: NEVER sing Karaoke while on the job...even if the other guy sings two Elvis songs first, to break the ice.  Ahhh!  :)

Hats are Up

More hats :)

My cousin was married in Hong Kong this summer, so many of my relatives were there and bought Andrew a couple hats, a dragon and a cat:

and last week we recieved a new hat from Wisconsin :),

and my mom's friend gave us one from Ocean City, New Jersey:

I finally got around to arranging the hats, and creating a place for them:

and more places, for the non-ball cap ones :):

Once again, thank you all so much.  They are great reminders of your care for us.

And now that I have your attention :) , I just wanted to share a few (lot) more photos that I took this week.  I went outside with the boys and put out a new slip n slide that Sammy got for his birthday.  I loved how the sun was shining down and making the water look so beautiful and I loved the way it was shining through the orange floatie.  So I took a few (lot) of pictures.

:)

Dear God

Dear God,

I know.  I have never been a favorite.

I don't feel compelled to write you love songs or poems.  I don't always pray before meals, and sometimes when I do, I am just rushing through to get to my burrito.  I am not in awe of you when I view nature.  I don't feel close to you on a mountaintop.

I've always been selfish.  I've always been self-focused; stuck in my own little world of me and my problems. 

I have done little things of which I am not proud.  I have done big things of which I am ashamed.

I don't think I can honestly say that I have ever lived by JOY.  You know, that Sunday School mantra?  Jesus, Others, You?  I probably live it in reverse, every day.

You tolerate my begging, and my constant prayers and worries about what other people think of me.  You hear my whining about how I am not social enough and how dumb I feel when I dress in the wrong clothes....

I am not part of a charity organization and I don't help feed the homeless on Thanksgiving.  I don't always put money in the offering plate. 

I feel disgusted and rageful and angry that you say you love us, but allow people to be raped and mutilated and ravaged by disease and die in tragic accidents.  Tough love?  Disgustingly tough. 

See, I am critical.  I see the negative first and have to dig for the positive.

I can be mean-spirited and feel superior.  I can be neurotic and feel inferior.  I mutter things under my breath that should never be uttered.  I say things outloud which hurt people deeply.

I scream at my children and watch them cry.

I am a slob.

So I suppose I expect pain.  I expect consequences.  I expect imperfection.    I expect to be hurt and feel depressed and miserable at times.

But Andrew? 

He's only two.  He still occasionally confuses his name with his age.  He wants to learn!  He wants to play and run and be crazy.  He wants to learn his letters and sounds and read books and practice coloring inside the lines. He wants to make upper case O's.

He wants to jump and play and wrestle and flip on trampolines and eat sour gummy bears and scream down slides and grow up.

Please dear God.

Look down on your sweet boy and show him mercy. Save him from a life of hospitals and pain.  Heal him physically and emotionally.

And despite my many issues, of which you are quite aware, please grant me your grace and bless me with his presence in my life. Allow me to watch him grow up.  Mold him into a beautiful, kind, caring man.  Let him have fun and pleasure and joy in his life.  Give him a heart of compassion and empathy.

Who knows...maybe someday he will run that soup kitchen on Christmas or build those houses in Guatemala or charter schools in Uganda.  Or maybe he will just bless everyone he meets with his kind smile.  Maybe he will give thanks before each and every meal because he wants to and means it.  Maybe he won't.

Give him a chance.  Please dear Jesus.  Let him live.

Remember, Thursday is Picture Day!!!

I'm not sure what, or who to blame it on, but I can NEVER seem to remember school Picture Day, putting out the garbage, or picking up my husband's dry cleaning.  The part of my mind responsible for those activities seems to consistently malfunction. To prove the chronic nature of the problem:   I wrote this last year....

I really have no excuse.  The school sends out gobs of emails.  I get a note from the teacher every other day: "Remember, Thursday is picture day."  "Remember, Thursday is Picture Day!"  I have the order form with all of the lovely choices of backgrounds and all of the choice packages, A, B, C or J.  I even got out my calendar and I wrote in big permanent marker letters  "PICTURE DAY!"

But none of it worked.

This morning I drove into the parking lot and that big, red, neon light was flashing on and off:  PICTURE DAY! PICTURE DAY! and all of the little girls were wearing frilly dresses and sparkling shoes, and the boys had gel in their nicely combed hair.  And my heart stopped, for just a millisecond.

Fearfully, I turned my head around towards the back seat.  I kind of hoped perchance he had picked out one of his nicer shirts for the day?  But of course not.  It was a bright yellow t-shirt with a picture of a big monkey holding a huge chocolate bar ...a souvenir shirt from the Lindt chocolate factory in Germany.  And did I mention his hair?

Last night he was supposed to be "cutting and pasting" for his homework.  However, he decided it was more fun to try other creative pursuits with his scissors.  While the rest of us were sitting at the table coloring, Aaron said, "I can't scalp you Andrew.  You don't have any hair."  (He watches old Davy Crockett reruns with Grandpa...we may need to reconsider that pasttime.)  Perhaps that should have been a warning, but just then my phone rang.  So I walked over to pick it up, and as I did so, caught a glimpse of red scissors moving quickly across my 6-year-old's forehead.  Chop chop.  Bye bye haircut-from-Saturday-that-looked-so-cute-and-everyone- commented-on.  I screamed.  He dropped the scissors.  And then we all laughed, because it was just ridiculous.

I would have just gotten out John's electric trimmer, but the last time I used it, John ended up with several bald spots.  I figure, best leave it to the experts.  But, as I mentioned before, I forgot about what day it was today...

Back to the car.  I cautiously peer back there and peek at him.  Cute and sweet as can be, but missing big chunks out of the front of his hair and dressed in bright yellow.  It would be fine it were just for an individual picture.  I might purchase choice A, keep a few pictures for blackmail in the future :) and save some money.  But of course, there is also the class picture to consider....the one that will be in everyone's year book. Forever.  But it was too late.

When Aaron got off the bus today I asked him if anyone said anything about his hair.  He said, "No, no one!"  They all just thought things.  Did I mention the garbage didn't get picked up today either and will now sit there collecting smell for the next week?  And the dry cleaning...yup, still waiting to be picked up.  I really need to figure out how to reactivate that part of my brain.  Soon! :)

You Capture: Your choice

A few pictures from this week, hastily edited while being begged to play Mario Kart :)

I'm off to Rainbow Road.  Catch ya later.

Tardy Tooth Fairy

When Aaron got off the bus yesterday he was beaming.  I knew something great had happened, even before he spoke.  He lost his 5th tooth, before his friend Alex!!!  (Apparently there was a competition).  Around his neck was the trophy, a tooth shaped necklace, and inside, a lower lateral incisor.  This preceded an evening of discussion and pondering about the reality of the Tooth Fairy.

"Is it really just you? My friends say their parents take the teeth...but that doesn't make sense, why would you want my teeth?" I just smile and raise my hands a bit to suggest that it doesn't make any sense to me either.

And I am debating to myself,  should I just tell him?  I feel dishonest.  But no.  I have two more boys with teeth.  Once Aaron knows, there is no keeping that secret.  And the Tooth Fairy is fun.  So I just try to stay as quiet as possible and let him come to his own conclusions.

After going round and round about the logic of the tooth fairy and possible parental intervention he decides, "There must be a Tooth Fairy."

So last night he wrote a very long note.

In case you can't read that, or don't want to try, I will interpret:

Dear Tooth Fairy: 

Instead of money I want a super power instead.  But if you can't give me a super power give me four dollars.  Give me a force field.  How you activate the force field: snap your fingers once.  How you unactivate the force field is by snapping your fingers.

Aaron

Mommy

Apparently I cosigned without realizing it.   That gave it a little extra oomph and authority I suppose.

However, while I was pondering, and a honestly a bit turned off by the many "give me's" in the note, I was also smiling about the force field.  Who gave him that idea?  While I was trying to decide how to handle it, and how much money I should really give him, I fell asleep.  Oops..:(

So this morning I faced a VERY disappointed and crying six year old, who had no force field, no four dollars, no nothin. 

So he went over and over in his mind, and outloud, what might have gone wrong.  "Do you think it is because it was in the toothcase?  Maybe she didn't see it?"

I told him that maybe there were "so many first graders with lost teeth last night that she didn't get around to all of them." 

But that didn't satisfy.  He ruminated and ruminated.  "Try again tonight," I said.  "I bet she will come."

"Okay, he said.  But this time I am going to ask for 10 dollars for being late."

Sigh.

So I am composing a letter to Aaron for the Tooth Fairy:

Dear Aaron,

I am so sorry about not getting your tooth last night. 

There was an accident in the tooth castle and all of the teeth came crumbling down. 

 I had to spend all night fixing it up.  I used up all of my force fields to put a protective barrier around the castle to prevent future accidents and future delays in tooth pick-ups.   I also used lots of money to pay the construction workers who helped me fix the castle, so I am a little low on cash.  Here are two dollars.  Thank you so much for your beautiful tooth.  I am so sorry I was late to pick it up.

Your Friend,

The Tooth Fairy

Whatever happened to a quarter under the pillow!!!?

:)

A little dragon thrown into the routine

Until last April, I never realized what a blessing it is to be able to drop off and pick up my own children from school.  When Andrew was initially diagnosed we spent so much time in and out of the hospital that I rarely got the opportunity.  I had to rely on grandparents, and friends, and friends of friends....It was sad for me.  I missed it.

It made me realize that despite the frantic, sometimes screeching, search for backpacks and lunches and matching socks I really enjoy the whole "school drop off" process.  I enjoy saying "goodbye" for the day and blowing kisses out the window.  I enjoy the energy of the busy school and noticing the outfits of the teachers in the crosswalk.  I love to hear the happy screaming of the kids on the playground.  And I love seeing that big welcoming smile when I pick them up after a long day apart.

I am finally back to that routine, at least once a day on most days.  I may not always make it to pick up, but for the most part, I do everything I can to be there for drop-off.  It makes me happy.

After we do a quick drive-through goodbye for Aaron, we head straight to Sammy's preschool.  We usually arrive about 15 minutes early.  I usually spend the first few in a  frenzied scramble of mascara and foundation, applied with the aid of a rearview mirror.  After that, the three of us head to the playground for a few minutes of play before school starts.  Andrew has always been an avid fan of this pre-preschool ritual. 

Today, while I was finishing up my last few eyelashes, Sammy was pacing the car like a caged lion.  His friends were already on the playground and he was eager and desperate for me to "be done!" so he could escape and run free.  Andrew was getting animated and excited as well.  "Where's my dragon hat?" he said urgently, "I'm going to roar at them."  I opened the car door, plopped it on his head, and off he ran, following Sammy down the sidewalk.

We got there and faced a row of three four-year-old boys.  "ROAR" Andrew growled.  "ROAR!!" (This is where they were supposed to feign fear and cover their faces in horror like every nurse/doctor/adult does).   "We're not scared of you,"  they said.   "Play along boys, play along"  I thought to myself, trying to send them subliminal messages.  But it didn't work.  My heart sunk a little bit as I watched Andrew drop his head, wipe his nose with his hand, and turn around in search of the slide.  He seemed okay, but my heart was a little heavier.  That hat has become almost like a super power.  It gives him attention. It makes other people laugh.  It makes him feel a little more powerful.  And this morning it didn't work.

Later we were all on the jungle gym and Andrew was sitting next to the same "big" boys.  He was so active his hat kept falling off, revealing his bare little head.  One of the boys said, "Why did you get rid of your hair? It makes you look uglier."  I knew he did not intend to be mean; he was just being an honest four-year-old.  So I said to him in a whispered, firm, kind, warning-through-my-teeth tone of voice, "Don't say that."  Ignoring me, he repeated, "Why don't you have hair? It makes you look ugly."  And I again repeated, looking sadly into his eyes, "Don't say that."  He seemed to get it the second time.  I noticed that his eyes were understanding mine, maybe a bit.  So then I changed tactics and I said, "Did you see his scar? Isn't that tough looking?  He is bald and has a scar!  He is tough." The boys seemed to like that and said, "yeah! that does look tough."  But inside, I was feeling sad for my boy.  Andrew didn't comment.  I'm not sure he even knows what "ugly" means.  But Mama does.  And it hurt.

About that time, the classroom door was opening so I walked over, kissed Sammy goodbye and signed him in.  I picked up my little dragon and headed to the car for another day of chemo.

We are back to the old routine.  Kind of.  At least a mutated form of  "old."  We are blowing kisses, smiling, playing, dropping off, picking up....    But Andrew has no hair and a hat that sometimes works magic.  Andrew may come to the playground attached to tubes and my hip.  I am more protective.  I come armed with Purell and distracting comments.  I am more fragile and prone to cry (at least inwardly) when a four-year-old hurts my feelings.  But I am there.  And after the last few months, I feel blessed to be there.  I am so grateful for every morning.

Celebrating Sammy C.

Today we celebrated my middle son's 5th birthday with 25 children at Pump it Up...a huge room full of  inflated jumpers.  The kids had a blast--and they almost forgot they had parents, so the parents got to relax...at least a little bit.

(Can I express my shock here and say that one father came with his two daughters.  He had not RSVPed.  He then left the party, leaving his daughters behind, and had to be called to come back because his youngest daughter was crying. He gave Sammy a present addressed to another child, and when Sammy opened it, it was a tea set.  The boys around him were snickering and Sammy was so embarrassed he started saying "no! no!" and refused to open it.  Then I was embarrassed.  I didn't want to make him open it, but didn't know what to do with the half-opened present? So I tried unsuccessfully to hide it under some of the strewn wrapping paper. John was mad and plotting revenge for his red-faced son.  I reminded him that it was the most sad for this man's poor daughters!!  Geez.)

My sweet Sam has loved the Disney movie "CARS" for three years now, and still can't get enough.  He got three sets of the same four CARS.  I asked him if he wanted to bring some of them back and get something else in exchange.  He looked at me like I was nuts and said, "No.  I love them."  Well okay then.  Easy enough.

I was thinking tonight of how we decided on his name.  My husband, who likes to think of himself as being tough, also has a sensitive side and likes to read and write poetry (I love him).  He likes to say that we named him "Sammy" in response to one of his favorite songs from Iron Maiden "Rime of the Ancient Mariner" (based on the poem by Samuel Taylor Coleridge).  But that was not what convinced me.  John started reading Coleridge and became a fan.  One night he showed me this poem, and our baby was named.  (Plus "Samuel" was MUCH better than some of the other options I was left with...:) )


Frost at Midnight

by Samuel Taylor Coleridge

(Third and fourth stanzas)
Dear Babe, that sleepest cradled by my side,
Whose gentle breathings, heard in this deep calm,
Fill up the interspersed vacancies
And momentary pauses of the thought!
My babe so beautiful! it thrills my heart
With tender gladness, thus to look at thee,
And think that thou shalt learn far other lore,
And in far other scenes! For I was reared
In the great city, pent mid cloisters dim,
And saw nought lovely but the sky and stars.
But thou, my babe! shalt wander like a breeze
By lakes and sandy shores, beneath the crags
Of ancient mountain, and beneath the clouds,
Which image in their bulk both lakes and shores
And mountain crags: so shalt thou see and hear
The lovely shapes and sounds intelligible
Of that eternal language, which thy God
Utters, who from eternity doth teach
Himself in all, and all things in himself.

Great universal Teacher! he shall mould
Thy spirit, and by giving make it ask.
Therefore all seasons shall be sweet to thee,
Whether the summer clothe the general earth
With greenness, or the redbreast sit and sing
Betwixt the tufts of snow on the bare branch
Of mossy apple-tree, while the nigh thatch
Smokes in the sun-thaw; whether the eave-drops fall
Heard only in the trances of the blast,
Or if the secret ministry of frost
Shall hang them up in silent icicles,
Quietly shining to the quiet Moon.

We love you Sammy C.!

A new day

You know you are overly emotional when you start throwing around words like "blasphemous."  (Although it is kind of fun to use once in a while, you should try it.)

Anyway.  Bad day yesterday.

I think I have somewhat pulled myself together.  At least for the moment.

That's how it goes.  One day you feel like God is working a miracle.  The next day you hate him and think he's out to get you.  At least, that is how it goes for me.

Andrew had a blood transfusion today and his skin is a little pinker and he still has a few eyelashes left, so I will go to bed, thank God for the blessings of the day, and hope tomorrow is even better.

I actually have NOWHERE to go tomorrow.  I may actually clean this disastrous mess of a house.

Go ahead.  Try it.  Blasphemous.  Blasphemous. 

Happy Wednesday!!! Truly.  Hope it was.

Sick and Angry

Today as I watched my anemic and pale son shriek, "MA-MA, Maaamaaa, maaamaaa, maamaaa" and try desperately to pull his shirt down over his vulnerable port, and get his knee in the way of the nurses and their inevitable needle, I could feel the rage rising in my chest.  

I have to constantly remind myself that this is saving his life.  "This is saving his life.  I hope."  "This is saving his life. I hope."  My new chant.  Because it is SO HORRENDOUS that "life" is the only reason that it makes any sense.  For any other reason it would be considered torture.  It would be considered child abuse. 

As I watch my son now start to lose his eyebrows and some of his long eyelashes I wonder how long it will be before he is completely hairless.  I know, compared to the rest of everything, this is trivial.  But it is painful to watch....I am practically counting each lash each day.   "This is saving his life. I hope."  "This is saving his life. I hope."

As I watch, over and over and over again, his skin turn from slightly pink to pale white, his blood cells demolished by this horrendous cure, I feel rage.  It disgusts me....  "This is saving his life. I hope." "This is saving his life. I hope."

I feel rage at God.  There is no one else available.  At one point today I was trying to be a nice Christian and saying "This must be how God felt watching his own son suffer." But my thoughts continued..."If God loves us as much as he says he does, then he must be in utter, unspeakable, indescribable pain every day."  And then I thought,  "Well.  Good. I hope he is in pain.  I hope is heart is broken.  I hope he screams and cries in agony every millisecond of every day.  Because otherwise, I hate him."  Those thoughts were in my head.  I'm not proud.  I'm just being honest.

Because this is nothing.  Andrew's cancer is nothing compared to the ridiculous amount of pain and suffering out there.  And this "nothing" is horrendous enough.  I know I am supposed to blame humans, and our sin, but I am not in the mood.  Give the mass murderers cancer.  Leave my baby alone.  So today, I am angry and blasphemous.

I am also sick.  Swollen lymph nodes and achy all over.  Sick, angry, and blasphemous.   Happy Tuesday.

A morning in the life

This week was 5 days of outpatient chemo.  We got into a little routine: 

I open the car door, get Andrew out of his carseat.  I slowly put him down, being careful not to pull his tubes.  I put his dragon hat on his sweet head.  I take his backpack full of fluids, and put it on my back.  Holding his little hand, I drag him around to the other side of the car and grab my ridiculously huge bag full of books, movies, ipods, and toy dragons and put it over my shoulder.  I grab the extra bag of fluids needed for tonight's backpack.  Andrew asks to be picked up.  I pick him up.  Brighty of the Grand Canyon (a book about a pack mule) comes to mind, as I trudge, back-aching,  through the parking garage.  Only a few more steps...

Room 107.  Pediatric Oncology.  It still stings.  Advertisements for groups for "Survivors of Pediatric Cancer" on the walls.    I flinch each time.  At least the receptionists smiles instead of grunts (like the last place).  Another bald two-year-old child is inside, with her familiar "smiling on the outside, crying on the inside" parents.  We smile.  I wonder what her story is.  They probably wonder the same about Andrew.  I am still not chatting.  So it ends there.

I fill out paperwork while Andrew counts the colors on the couch. "Two orange cushions" "Three blue cushions..."  The nurse comes in, we follow her into the hallway.  Time for blood pressure, temperature, weight and height(?)  (do they think he grew over night?)  I peek at his weight.  He is still gaining.  I smile.  Must be the two bowls of oatmeal.  Andrew takes his hat off with one hand and checks to see which one it is.  Is it the dragon one?  Yes.  "ROAR!" he yells at the nurse.  "ROAR!!"  Everyone gathers around for his famous "ROAR!!!"   He is happy to oblige.

I follow him like he is a dog on a leash, carrying his tubes and backpack behind him.  Off to the chemo room.  He pees in a cup.  We turn on Franklin, or Scooby Doo, or the Letter Factory, or Snow White, or Dora.  They hook him up to his chemo and a blood pressure cuff.  "Come up here Mommy.  I want to lie on you."  So I climb up on the bed.  I lie at the top of the bed, he sits in front of me and lays his sweet little bald head in my lap.  I rub it.  Can't resist.  And then he tries all sorts of cuddling positions for three hours, taking breaks for bananas, PB&J,  peeing, and changing movies.  I put on my ipod and read  Jon Krakauer's Where Men Win Glory  with his little body next to me. "I love you Mommy." "I love you too, Sweetsie."  "I miss you Mommy" "You miss me?  I'm right here.  I'm always right here."   "Do the dwarfs have tubes Mommy?"  "No baby, they don't."  And I feel some sense of relief that he is so young and so unaware.

Around two hours into it he he gets restless and starts getting a bit crazy.  I remind him that we don't want to put in another needle.  Please sit still!  That seems to work.  But he is still a little manic. 

One more hour and we can go home. 

I sit looking at his sweet toes, and can't believe that this little boy has anything wrong with him.  He is so happy and so full of life and so excited to learn.  He wants me to tell him how to "spell Snow White."

I feel so out of control and anxious.  I sit and pray. And hope.  That all of this pain, and horror, and the chemicals I smell on my baby's breath will be worth it.  I pray that these tubes will eventually, someday, be a distant memory.  One that never comes back to haunt us.

Please Dear Jesus.

Hell has cooled off

I have spent a lot of time praying.  I have spent a lot of time wondering.  I have spent a lot of time wondering about praying.  Does it do anything?  Does it help? 

I have prayed desperately in the past for things-- big things.  Some went my way.  Some did not.  I know that God does not answer every request that comes his way.  Then we would be the ones with the power and he would be a captive genie.  But it is so hard to accept that he may not answer the really big ones the way we want Him to...that he may not answer the ones that crush us, the way we want Him to.  How can he *love* us and allow us suffer so much?   I don't know.  I don't understand.

But I keep praying.  I think intrinsically the process works to ease my anxiety.  It helps me to release the pain.  It forces me to contemplate myself and my God.  Who am I?  Who is He?  All of this has forced me to reconsider. 

I look around.

Things are better.

I was in such hell for so long there.  Really.  Such hell. 

And I still don't know how this life will go.  But I suppose no one does.

But for now, I am thankful:

Andrew has adjusted to the chemo--he hasn't taken any pain medication in at least 2 months.  He rarely needs nausea medication.  He laughs and smiles and eats chocolate muffins while getting chemo. 

He is slowly, but surely, gaining weight.  NOT losing it.  He has accepted his "tubes."

I have been relieved of Ursula and her cold, removed, calloused, uncaring (I could go on) ways...I have been relieved of the whole unpleasant, cold atmosphere in which Ursula reigned.  (Can I have a big Hooray Hallelujah Fist-bump high-five AMEN?!!!)

I have been relieved of the hospital rooms occupied by multiple families and multiple tragedies and multiple beeping lights and multiple children crying.  HELL I tell you.

When I told MD Anderson doctors/nurses that Andrew was receiving three preventative mouth treatments a day, they all looked at me in shock.  REALLY? they all said.  And I said REALLY!!!!! you don't make your patients do that!?  I have been torturing my baby for NO REASON?  They only do mouth treatments when there is a problem.  What a novel idea.   SO I STOPPED THEM.  If MD Anderson thinks it is ridiculous then I will go with them.  NO MORE AWFUL DISGUSTING MOUTH TREATMENTS FOR MY BABY.  If he gets sores, we will go back.  But for now...NO MORE!

No more vomiting from forcing down liquid antibiotics.  Now we crush the pills in chocolate ice cream.  Why did I have to figure that out for myself???

Radiation is over.  No short term side effects to report.  Praying for the long term.

I haven't stayed a night in the hospital in over 8 weeks.  I can hardly believe it.  Only two more scheduled stays.  I hope that is all it will be.  But even if not...the room is private.  And quiet. 

I spent three hours today in a quiet clinic (with a nice nurse who has made much of this possible, thank you so much T), and then went home to my sweet boys, did homework, ate dinner, and put them to bed. I love normalcy!!  Andrew is attached to tubes, but we can handle it!

There is recent news about Andrew's type of cancer and possible scientific breakthroughs that could lead to better treatments. Maybe a future cure? One can hope.


I am almost afraid to say all of these things for some superstitious fear of the future.  But nothing can change the past.  And the past two months have been BETTER. 

So maybe there is something to prayer.  I don't fully trust God.   I admit it.  I have been distant from him for a while.  But the thought occurred to me that perhaps he might woo me to his side with good stuff rather than making me run to him out of fear...is that possible?  I'm wondering if maybe His hand has been more involved in all of this "good stuff" than I give him credit?  Maybe He heard my cries of misery and has placed in my life people who have helped make it better?  Maybe?

Regardless.  There is no denying that it is better.

So thank you, friends, for the prayers.

I have room to breathe. 

I feel cared for. 

Hell has cooled off...at least a little bit.