Moments In The Valleys

You know years ago someone told me the moments in life such as life's trials and tribulations always seem to have peaks and valleys.  Something I've sorted in my life as.... chapters.  I look at each page, each sentence, each formed paragraph as a contribution to this chapter. In my life. In MY chapter book. Not sure I'd ever like to go back and read my book. But I certainly know I could surely offer some sound words of wisdom later in life to those willing to listen.  Most important, my family. If not my family, well maybe someone out there in this big wide webbed world will learn a little something about my chapters. 

That very family that I have worked hard to care for. To nurture.  To bring all the goodness a mom brings to her family. Or in my case, my birdies.  

Lately, I kind of wonder if they'd look back and see so much sadness.  Well, I'm quite sure they'd see this last chapter as a doozy. 

Last week as Kris made his way to labs, I of course praised [him/ them] on, simply because it was me that asked for these bi-weekly labs. And as per usual they get it done.  A normal new ritual for me, is to log-in.....the next day. I mean, why stalk those stinkers for a long night of WTF's, if the case may be. And so I wait until I'm surrounded by humans. Those very humans that have watched every letter and sentence be written in this chapter.  [work family]

Everything looked good to me (last Thursday), except for his WBC.  And if you wonder what those are- It's basically your cells to help fight.  Fight off infection.  Viruses...among many other things.  If you remember last year during "rounds" of chemo, his counts would wipe out, we'd mask up, glove up and hide from anything and everything. Often times if they wouldn't recover on their own, they'd give him "Neuprogen" injections to boost them (in fact, our donor had to endure a week straight of those injections leaving him feeling like he had the flu-sore body, etc. ----->forever my hero)  Soon they'd recover, and then boom, we go through another round.  Sometimes a fever would arise, and we'd deal with it.  But it was always those whites.  Those ever so important whites. 

The thing about transplant is, there's no recover shots.  There's nothing that can be given to him to boost them back, if they fall. It's trial and error. In my case it's walk in circles frantically trying to figure out why they dropped. 

When I checked his labs on Thursday morning platelets were at 146.  WBC 3, reds good, hemo good, blah blah blah.  There was one other area that looked wonky (turned out to be his kidney's) -  On Friday as we sat in her office she began her normal routine.  Reading down the list of this and that...as I sat quietly reviewing what I'd reviewed the day before. Only she reads deep.  Like the parts of his labs that get grey to me, yet so perfectly black and white.

She began to question if he's taking any supplements.  In their terms, a work out regime at home, or busy on the run schedule Jen replied they make shakes. (Work out protein weight gain type shakes) Innocently enough, these are so harmful to this new growing thriving body.  A nine month old blood inside, tainted with organs that have gone through lethal doses of radiation and chemotherapy.  Enough meds to build a little mountain on his table top.  He can't tolerate this stuff.

He's also been known to recently like Monster's (which according to him, they're the new healthy ones-insert that emoji with the eyes bugged out).  At times I still wrestle with the ignorance of what feels to be a 12 year old. He will TRY to argue.
I'm lucky enough to have a girlfriend-in-love (Jen) whom takes thee BEST care of him. Seriously that girl....

And so I let our doctor roll out her lecture to him in that 10X10 white room.  The four of us.  The mom sitting quietly. Taking in so much, and yet not letting much out.  I did request if she thought it was okay if he went on a trip to Panama next May.  A trip for Jens brother.  A wedding reception of sorts.  

She obliged.  First up though was to start some vaccinations.  Flu shot.  

That even started a fire under me.  Do you all remember Bill's bad experience with the flu shot a couple of years ago? so, yah. 

Her next recommendation was to continue the schedule of reducing meds (mainly anti-rejection).  So week by week, month by month they'll want to decrease the dose into his body.  This means two things.  Either his body accepts this, or it won't.  The outcome can be the donor cells will wake up, and start attacking any Kris cells left behind and a war starts.  The war can include these few things.  Severe rash on the entire body. Severe vomiting and or diarrhea. If that happens they'll adjust again, some more. 

My request to increase Gleevek (chemo to keep Philadelphia Chromosome away) was positively declined as she didn't know what made his whites drop as they did. 

She's also checking for Philadelphia chromosome itself. Something we hope and pray is gone forever.  The reason for transplant is the presence of this yucky mutated chromosome. The word alone makes me want to poop.

We left there, as always our trek to the car.  Light hearted, and full of love as always...mixed with that long drive home on a Friday at 3:30pm.  When I arrived home, it's not uncommon for me to literally drop everything and jump into the shower. I pray, I comb out knotted hair,and I pray some more. 

The weekend was pretty peaceful. Saturday I worked around the house. Adding cute Halloween decorations to my porch.  Setting out pictures of them as babies but not until I sat gazing into their little eyes.

Their costumes.  Putting out Kali's favorite pumpkin figurine. I even had some quick guilt of the many times I rushed Kris through trying to put together a costume, on the day of trick or treating... because I worked, and after picking them up from after-care, I'd arrive home overwhelmed yet still tried to put together a "scary bum" one year.  And to think about that now breaks my little heart.  He was so over loved and yet at times, I feel like I over rushed him.  And well because... parenting. It sure has a funny way of questioning all the choices we've made.  It sure has a way of twisting guilt into the pit of our guts.  Right?

Parenting.  What a word.  What a verb.  What a sport. What a job. What a heartbreaker.

Anyway, I am digressing.  

But probably just the same as I did over the weekend as I pretended that WBC wasn't an issue. That I'm not dangling from a thread from the sky.  That ignoring fear and praying for hope will get me through. 

That waiting for counts to come up, or the phone call about his Phil/Chrm. Or that everything is gonna in fact work out just fine.  We gathered Saturday afternoon with friends on the beach as they hosted their 23rd year of a volleyball tournament bringing together old college friends.  I mean, how amazing and sweet is that.  

On Sunday we celebrated Thom Dutton's 60th Birthday.  And our friends all gathered around a table listening to live "steel drum" music while sipping wine.

All along, this little monster sits on my shoulder.  Whispering in my ear.

Tossing and turning Sunday night, while praying for more Mercy.

BEGGING to hear me.  

Wondering why I research as I do.

That reading about the topics to help myself, at the same time scare the shit out of me.

And that just this morning I sat with my daily devotional in my hand and yet tears wouldn't stop falling.  Actually weeping as I called Bill. 

I could not pull it together.

I've been such a strong girl my entire life.  My.Entire.Life. 

And yet, I'm so weak now. 

My aunt called me on the way to work. It was freaky to see her name pop up in my car.  That moment that I thought, "okay Jesus, you're the man...." answering and falling yet again into a blubbery mess. 

Her words.

Give it to God sweety. 

Give it to God. 

And trust.

Pre-transplant December 2015

Eight Months post transplant. (taken last month, he's now 9 months)

No one said it would be easy. 

Not one person ever looked at me straight in the face and declared this life would be better and change for all the goodness involved.

I am a warrior.  I fear so many things, and yet bury fear for the sake of my son.  I will preach, nag and push in areas I know need my assistance. (if you see him trying to drink anything other than real juice or water, please slap it out of his hands, and call me. lol)

And yet, trusting that everything is in God's hand is harder than it sounds.  Or seems.

The normal desire to push and do all I can, and yet knowing deep deep deep down inside, I truly have no control at all.

What I do have control of is LOVE. 

And handing out all the LOVE, guidance, PEACE and time together as a family as I can.

My wish to you, is that you never have to witness what my eyes have witnessed.  That you hold tight to your birdies. Through good and bad. Remember there wasn't EVER a recipe written for parenting.  You might come home to a costume-less kid.  Or you might have lost your shit at them because..well, parenting. And life. And work.  And being normal.  We aren't perfect humans.  This life isn't perfect.

Thank you to my homegirls that rally me in texts'. 

My aunt who listened to me this morning whole heartedly and understands.

We never signed up for this chapter. I certainly the hell' didn't.  

And so at times I crumble.  At times I sit and stare off in the distance and think....why.

Why.

WHY.

But then I think maybe it's because God knew I could handle it.

And because my heart was always driven to just.... Love.

And be still. 

Until it's 2:30am, and I'm tossing and turning and stirring up them sheets. LOL

"For I am the LORD your God who takes hold of your right hand and says to you, Do not fear; I will help you" Isaiah 41:13

Please keep Kris in your prayers, positive thoughts, juju's, vibes, circle of karma love, or whatever you have conjured up on your soul. And send them his way.

Or my way.  I certainly love all of you.

Because it's you that have helped me navigate this messy nest that at times feels like my twine is all jacked up.

Big love,

This Mama Lisa