The Difference In A Year

Not just a year, but months.  

Months and months of riding on this rollercoaster with our belts so tight at times we'd all feel as though suffocation was due next.  At least for this mom.  There are days I feel like I have the world in my hands to help carry burdens.  At least the most important burdens.  Then there are days that feel like I can curl in a ball and hide in my room. In bed. 

I reached out to my London friend yesterday "Hi Sumaira"-  Just checking in....and her response is exactly how I feel some days. It does get easier, but just sits on your shoulder every so often. She's overwhelmed. Her boy diagnosed Sept 2015-Transplant weeks after Kris.

And so, life is moving on.  My response simple. Because I know.

I truly know how she feels.  

Unsafe. Unsure. Scared, yet hopeful. 

I feel you Sumaira....I do sister. Hang in there.  Easier said than done.  Just one foot in front of the other.

You can do it mama.

Interesting today sitting down at my computer at work with a scrambled screen.  Something my clever I.T guy says in my ear that brings reality in this chapter to realness. 

Lisa, you might need to save all your pictures onto the F Drive. 

Your storage is too full.

Which translates to me as, purge baby purge. Slide those memories into some other folders, for another day.  Or year.  Or...never.

Not forever trash.  But maybe let's just move it to a safe hidden side.

Who needs to relive the bald pictures.  The sick hard days.

That IV that haunted me.
Gosh just the other day while picking up his meds I cruised by the area we'd wait for spinal chemo, to later try to get him to my car carefully like a weak wounded baby bird. Mama adrenaline in full force.
How the fuck did he get through that you guys?

That port line in his arm that became so simple, yet twisted for all of us.

The many pictures of this journey.

Maybe it's time to retire them.
Just like the many notes of love and encouragement I finally took off my fridge.
Into a box.
Out of sight.
The need to build my own strength.
Faith.
Grace.
Without reminders.

Move em out.

On the F drive.
In the boxes.

We spent the weekend away celebrating Kris' 27th year here on beautiful Mother Earth. 

On this day last year I stood next to his bed as his doctor delivered the news to us, confirming what we feared the most.  

It's all surreal still. 

This past weekend we stepped away as a family. 

Catching up on things in life versus just the constant discussion of medical, appointments, counts, medicines...the nag of a mom. I have to say, watching Jen and Kris cover him with sunblock, sunblock long shirts, and hats was so impressive. At one point, we all kind of chuckled at how slathered and iridescent  he was.  Staying under the umbrella in the pool, or bimini in the boat.  So proud of his awareness.
I'm telling you, he's fully cautious, which makes me incredibly proud.

We laughed SO hard our first night sitting in Mario's restaurant dining on Italian food (which isn't a favorite of Kris' but he agreed because well, 5 against 1).  A monsoon came in like a freight train. Dropping rain drops big enough to splatter outside creating the aroma only a desert rat can appreciate.  We sure did. 

The power flickered out once while we ate in a room filled with other folks.  To a banter of...."ohhhhhhhhhhawwwwww" And the lights would come back on. 

Soon they flickered out and stayed out.  Causing a room to chuckle, cheer and carry on like something you'd only dream of.  Stuff like that is just rad.  Before you know it, they'd bring his cake out to sing.  I watched his face light up, as that candle lit our table with just the perfect lighting. 

Picture courtesy of his dad. Kris, I'm sure you're not stoked on it, but we love it.  Happy dude, happy parents!

To laugh across the table with us in a dark restaurant as we sang happy birthday.  

The candle never looked more beautiful.  He blew it out.  And we lit it again.

  

All of it meant to be. 

No tears for me. Just wine.

And smiles. And laughs.  Lots and lots of laughs.

I took yesterday off to organize more paperwork, appointments, schedules for Kris and Kali.  Medical (his co-pay charges for an almost million dollar transplant have begun to roll-in....enlightening kids...City Of Hope helped save my son...and dealing with the financial side isn't fun, but kind hearted those gals were yesterday...) I also sorted through Kali's tuition garb and parking passes-shout out to 700bonestoparkacarwtf.  

The one thing that stands out is just how much fuller my heart felt. 

From last year.  This day. 

August 23, 2015 Biopsy of nodes. 

 

October 2015

To now.....August 2016-

God is GOOD you guys.....

I can tell you this warrior path hasn't been easy.  And I'm sure it has more warrior days ahead. 

If you are a reader of mine in bone marrow transplant mode. Know this. You are not alone.  You will get through it. And take one day at a time. This picture above full of hard earned smiles haven't always been smiles. Plenty of blank stares, and lots and lots of tears.  So pray hard and ask for mercy.  There will be good days and there will be bad days.  As a matter of fact there will be days where you'll feel as though it can't get worse.  And it will. And then it will turn back in your favor.  If you are advocating for a family member stay focused.  Stay on top of meds. Doctors, and nurses.  They're human just like you.  Errors are made. Sometimes small, and sometimes not.  You know your patient.  Speak up.  With a kind tongue, do it.  Sharpen that tongue blade as needed.  Keep wiping that room down like a ninja. Listen to your patient, and wipe their tears.  Bring warm towels on the extra bad days, and cool towels when needed.  You will watch a body go through phases of pure miracle-mode.  And that's okay.  You will need to rub backs and feet on extra sad days.  And sometimes just sit quiet.  You will fret over counts now, and even later.  hellolisa...

This year has been nothing I expected. And yet everything I expected. 

I am so lucky my son is here.
One year later.
One year later.....

Stay strong, and keep doing what you love....

Because as Kris says....---- "Those who won't, don't"

Happy Tuesday lovers.

This Mama Lisa

 And big fat PS.  To the sober navigators of the not so,  eh em, Kris....All praise hands to you.

Man, he was a trooper with all of us.  That's for sure...Barrrraaaaacuuuuuddaaa!
And if you're from the Havasu area, or are frequent Havasunians, stop by the new "Culvers" for an iced custard. Straight outta East Coast vibe.  AND tell me if it reminds you of a hamster cage. The smell you guys...the smell. woah.
Jen and I were buckled over, wiping tears and doing the pee-pee dance.
YES.  Yes to hard laughs.
And family that can seriously place an order for you at the counters.
Yes. 

 pss. labs and doc appointment this week.  Praying all good signs!  And good counts! And a doctor that always opens her heart and ears to me.  For that I will be forever grateful.  Because there's something about motherwarriorhood.

-To The World You Are A Mother, But To Your Family You Are The World-