Hope4Peyton

Can I tell you how much I love my son? I gave birth to one the most amazing boy children ever to plunge neck deep into a 40-gallon container of Legos. There are days I want to just wrap him in a tortilla, dip him salsa and chew him up.

Then there are moments like this when I think he is a tool of his father’s master plan to drive me insane, because this is such a MAN moment there is no other possible explanation!

I have a nasty habit of forgetting everything what I need to get at the store if I haven’t written it down. If I don’t have my blue (or pink or yellow, whatever, it’s not color specific, I’m not THAT weird) post-it note telling me all the things I’m supposed to buy, I run the risk of getting a little too excited in Target and going berserk. Thank-you cards! Lip gloss! Converse All-Stars!

I’m getting a head rush just thinking about it.

On this particular trip to Target I was over halfway there when I realized I’d forgotten my post-it. Instead of letting my brain explode, I dig into my HUGE purse and grab my Peyton-notebook, which is a book I keep at all times because the child could have an artistic outpouring and if there is no paper and pen to be found it can lead to a catastrophic meltdown.

I hand it over to Nathaniel, who at 10, can read and write with the best of them.

“Dude, write this down.”

“Ok.”

“Toilet paper. Dog food. Toothpaste.” Then I look over to make sure he’s writing it and I see:

t paper
d food
t paste

“Nathaniel, will you know what these things are when we get there? Because I need you to know what you wrote.”

“Yeah! Toilet paper, dog food and toothpaste.”

“Okeydokey.”

I go on with the list, and we make our way to the store.

Because I’d just gone through the list both mentally and verbally, we were flying through Target with the greatest of ease. Then I figured I should check the list just to make sure I hadn’t blanked on anything.

Toilet paper? Check.
Dog food? Check
Toothpaste? Check
Wach/k/b

What the…?

“Nathaniel! Son, what does this say?”

“Ummm, I don’t know.”

“SERIOUSLY! You just wrote the list, what does that say?”

“I don’t know, you’re the one who told me what to write!”

“Don’t try to use logic on me, son, because I know I didn’t tell you anything that looks remotely like that word. Just tell me what the letters are supposed to be so I can try to figure out what we were getting.”

“W-A-C-mumble mumble mumble.”

“C-what?”

“It’s either a k or a b”

“Nathaniel, what word do you think is spelled like this?  Does  it LOOK familiar to you AT. ALL.?

“No, not really, no clue.”

“Did I tell you we need a wackabee (pronunciation of WACKHB)?”

“I don’t think so.”

“Dude, do you even know what a wackabee is?”

“No, but that doesn’t mean we don’t need one.”

“If you can point me to a wackabee, ANYWHERE in this store, I’ll buy 10 of them.”

At this point, the Grandma behind us is about to bust her supportive hose cracking up behind us. We give up.

Neither of us has any idea what we were supposed to buy. We still don’t know what a wackabee is. The world may never know.

And when it all seems too much…concentrate on something cute:

Saturday night I was laying in bed trying to figure out why I couldn’t sleep, what was keeping me awake and it sure wasn’t because I wasn’t tired.  All week it’s been a weird feeling, like I’m waiting on something…a thing I should know but can’t quite put my finger on.  Wrestling with my pillow Sat night, it was a did-i-leave-the-stove-on-is-the-door-locked-what-the-heck-is-wrong! kind of feeling.

Then it hit me.

It’s July 13th.

We mark so many monumental days throughout the year. Our anniversary, birthdays, holidays.  THIS monumental day sucks.  This is the day, two years ago that we found out Peyton had cancer.  It’s Peyton’s port’s second birthday.  Bring on the candles, right?

I went to bed on the 12th the mom of 3 healthy kids, I didn’t go to bed on the 13th because I was sitting next to a hospital bed counting the hours until we’d wheel Peyton down for surgery.

On the 12th we went to the pediatrician, confident in his ability to take care of whatever simple ailment was causing her fever.  On the 13th I had a team of doctors with specialties I could barely pronounce saying words I didn’t understand about something I couldn’t comprehend.

It never even occurred to me that my daughter could get cancer on the 12th.  It was my every thought on the 13th.

The 13th marked a day that transformed our lives.

I was talking to a friend today and explaining that I can’t remember anything about the days leading up to her diagnosis.  It’s as if everything leading up to that moment just fades away unless it is in direct relationship to her cancer.  Did I not recognize a sign, a symptom?  How did I not see that she was really sick?  How could we not KNOW she was in mortal danger, her body already losing a battle against this disease?

Yet every moment of the 13th is crystal clear, each breath and thought etched on my brain.  I remember all the prayers and tears on the drive to the hospital, I kept turning around to look at her, convinced we would get there and it would be a mistake. I remember the feel of Pete’s hand holding mine, clammy, desperate, just like mine.  Trying to reassure each other that it was all wrong, there was no way this could be.  I remember those phone calls, telling people to pray…just pray and pray and pray.

It’s impossible to forget the absolute knowledge in Dr. B’s voice when he told me it WAS Leukemia, there was NO mistake, and they WERE sure.  How I laid over her little body, wanting to protect her from all of this, pretending that if she didn’t hear it that it was a lie, and I cried and sobbed until the nurse told me to stop because I was scaring her.  I also remember how every fiber of my being wanted to sucker punch that nurse. This is my baby, my child, she is part of my body and heart and soul.  I GET to cry! I GET to rage against this disease.  I GET to mourn for the life we had before this day.

That room, that smell, all that noise.  Watching all the needles and tubes, the bags of unknown substances hanging from poles that led into my baby’s body.  That look in her eyes that said she was scared and hurting and knowing she saw the answering fear in mine.  The way she clung to me, her fingers tangled in my hair, the way she fell asleep clutching my fingers.

That night of the 13th was the longest of my life.

We have come so very far since then.  But every day I wake up, I’m still that mom in the hospital, full of uncertainty and fear.  I am constant in prayer.  That is not just a phrase I use, not just a quaint thing to say. I AM CONSTANT in prayer.  For my child, for my children, for my family, for the many families and children we know, for the doctors and nurses that treat them, for each hand that reaches out to support and encourage.  I AM CONSTANT in prayer.

God got me through the 13th.  Through the 14th. Through the 15th and each and every day that followed. I know that He guides the days to come.  That’s why I’m able to get up and get out of bed….notice I didn’t say anything about showered or dressed…and move.

Standing in front of the pantry with Peyton in my arms, she’s melancholy and needing a lot of cuddles during this month’s steroids.  And food.  Lots and lots of food.  I had thought she was snoozing when I crept into the bathroom, when I heard her whispering, “huuungry, hungry, huuuuuunnnnggggrrryyyy”.

Wonder what she’s trying to tell me.

Me: Macaroni and cheese?

P: Too slow

Me: Peanut butter and jelly?

P: Too buttery

Me: Cereal?

P: Too breakfasty

Me: Apple?

R:  Too red

Me: Eggs?

P:  Too shelly

Me:  OK, really, you’ve got to get a grip, Peyton.  Pick something…anything!…and I’ll make it for you, but you have to PICK something.  (Can you see this girl ever trying to pick a prom dress?  I think I’ll start pre-medicating for THAT adventure now.)

P:  I want an apple.

Me: Great, I’ll…

P:  and some pickles….

Me: With an apple?

P:  and some of that white cheese, but it has to be cut into squares, not rectangles

Me: Anything else?

P: and an orange…and don’t forget some black olives too.

Me: All at one time?

She didn’t say a word. She just put her hands on my cheeks, looked deeply into my eyes and nodded VERY slowly.

As clear as a bell, I heard the words.

Now is not the time to mess with me, lady, just make my FOOD!

**Just in case you missed my steroid Haiku I wrote after her 1:30 AM feeding:

Crying in her sleep

I can hear the steroids rage

Comfort is my task

When I was pregnant with Nathaniel I was two weeks overdue and had convinced myself that there was a good chance that I would be pregnant FOREVER.  Perhaps I’d incubated the one baby that would be perfectly content to stay in my uterus and could only be pried out with the words, “It’s time to leave for college, you little freeloader!”

During that last two weeks I had a lot of VERY strange dreams.  There was the one where I was trying to get in an elevator and my belly didn’t fit (and if you ever saw a picture of that gut, you’d understand why I dreamed that) and the door kept opening and shutting on my baby belly….then when the baby was born it had two gigantic dents in the side of its head.  There was the one where I dreamed I could reach inside my belly button and pull the baby out so that I could play with it and cuddle it and then just shove it back in when ever anyone came around.

And I was still allowed to TAKE the baby home from the hospital!

But last night I’d perused a website and clicked on a video and beheld a sight that tormented my dreams in a fresh new way of horrible.  I have small children, I’m very familiar with Noggin,. I’ve tripped over a shoe, racked my knee into the coffee table and nearly killed myself more than once trying to reach the remote to turn THIS show off.  Yo Gabba Gabba.  Yet, last night I let myself be lured into clicking into a youtube video and watched the most inane bit of tv programming ever to hit HDTV.  It is 2 minutes of my life I’ll never get back.

In my sleep I kept hearing, “So yummy, so yummy!” and I kept getting up to turn it off, only to realize I was asleep and I couldn’t turn it off.  Then my dream self would go back to sleep only to “wake up” to that song again…and on and on.

I once stayed awake for 3 nights straight after watching Nightmare on Elm Street 3.  This was worse.

I spent my morning at the hospital visiting some friends who’ve been stuck inpatient for weeks.  It had been way too long since I’d had a chance to get up there to actually see any of them, and we keep in contact through calls and emails, but nothing is better than being able to just give them that big hug.

I was absolutely thrilled to see Connor’s little face light up and give me a HUGE grin when I went in.  I don’t know if he’s just happy to see me or if it’s because he’s a notorious “groper” and he likes it when the ladies lean over him.  But it was tremendous to see him smiling and interacting and obviously much better than when I’d seen him last.  He was still in the ICU hooked up to a vent, too many questions to ask to even know where to begin.  Now he’s progressing in positive directions and he truly is a miracle boy to keep leaping over each hurdle.  There are many more big steps before Connor is out of the woods, his body is going to have to endure a lot and heal from a long list of illnesses and damages.

Spending time with Christy, Jimmy’s mom was harder because Jimmy is not doing so well.  Jimmy’s cancer has relapsed 3 times and the chemo protocols they have had him on are failing to put him in remission.  The new protocol they started yesterday is the last resort…the LAST option…and it’s awful.  We talked a long time about the side effects, we’re not talking nausea and bad counts, it’s a whole new level of heart, kidney, liver failure.  14 days of these chemotherapy drugs and they could destroy his body.  We’ve always said that chemo is a fine line between killing the cancer and killing the kid, but this protocol really takes it to the absolute limits of that description.  It’s so hard to be with a friend and know there’s nothing more that you can do than offer a shoulder and listen and love. Because there’s nothing anyone can do.  But all hope is that after 14 days, Jimmy’s body will have withstood the drugs and the cancer will be gone so he can move into bone marrow transplant, that his body will still be able to endure bone marrow transplant.

Walking in to see Brooke was a little heartbreaking because she is such a bubbly little girl, a big smile and a funny laugh.  There are no signs of that smile or laugh right now. She has the saddest little face and she is so unhappy.  This is a miserable disease that takes so much joy out of these kids’ lives and it’s unfair and I hate it. She’s jaundiced from her liver taking a beating, she’s unable to have anything to eat/drink for 7 days because her colon is swollen, she’s been vomiting blood for an undetermined reason and she’s got fevers that can’t be diagnosed.  There was phenomenal news, her bone marrow results came back that she’s in remission!

To say these kids need our prayers goes without saying. Please pray for their strength, comfort and healing.  We have a mighty God with strength to heal these kids, but we need the faith to trust in His plans when they don’t match our own hopes and wishes.  I work and work to achieve that peace with God’s choices, but I never pretend to be anything less than confused with it a lot of the time.  I guess that’s where the faith comes in, I don’t have to understand it 100%, I don’t have to get it, but I do believe it.