Mila Grace

Three years now...this beautiful, sassy, determined girl came into our lives!

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She was my compass, my measure of time as I journeyed through months of difficult chemotherapy, sleepless nights, endless prayer to overcome fear and uncertainty.

I was still celebrating the good news of my daughter’s pregnancy when I was diagnosed with multiple myeloma.  I was in Dublin on business when I got the call.  I wept as I walked along the Liffey processing the magnitude of change that lie ahead.  I pondered life on the shoulders of my driver and doorman, and prayed in a pint of Guinness.  I wondered if I would be alive to meet this baby…and then did the one thing that would distract me from this cancer diagnosis and went shopping.  I bought the cutest baby girl outfits in my favorite shops on Grafton Street, not even knowing if the baby was a girl.  And over it all, I prayed for peace, trusting God to carry me through the uncertainty.

Life changed in an instant.  I left work, started treatment, studied all I could about multiple myeloma and was shaken to the core by the dreadful odds I faced!  I was not going to get trapped in worry…I was determined to survive, determined to meet this new little one.

As we all awaited her arrival, I thought of her, I focused on life!  Her life!  My life!  How this child would bring abundant joy just as her brother Reid had done a season before.  I dreamed of the hugs and smiles and happiness that only a grandchild can give.

Chemo was killing the cancer but not my hope.  It tried to steal my joy but it could not.  In the midst of the hell of it all, I was at peace…I trusted God’s timing, as inconvenient as it seemed, and His grace to sustain and restore me and bless our family with two new lives…mine and Mila’s.

A good doctor knows the best medicine is balance. Balance between treatment and living!  I was given options to live in this moment.

I chose to wait until after baby was born to have the stem cell transplant. I was determined to hold this child right away!  To meet her fully coherent and not in recovery or worse.  I would have an ally to begin a new life with…to be bald with and that was the one surprise!

Mila Grace was born that June day.  Full of spirit…full of love…full head of hair!

Now she is three!  And I have been gifted three years “new” life too!  Stable and strong! She is still my compass.  My measure of time.  My reminder that life is a gift and hope lives in the heart of those who believe.

So on this birthday, I celebrate all it is, that by the grace of God I am still here to love her…the sweet, brave, smart, funny and beautiful girl that delights us with her charm. She is a force…adventurous and fearless and I dare to say I see a little of my spirit in her!

 

 

Photos with permission from my daughter!

Three years and a hill…

I’ve been walking for decades. When I was 25, I was told it would save my back after a fall.  It has saved far more than my back!  Walking has been a source for both physical and spiritual renewal in my life.  Through life’s uncertainty, walking has been a reliable friend.  When my life becomes too frantic, it is rest.  When I need guidance, it is where I find God.  When I need respite, it is peace.  I have dreamed and prayed over countless miles of mountain trails, sandy beaches and city sidewalks.

My love of walking started when I was a child.  My grandma gave my sisters and me each a small cotton bag filled with ten to twenty shiny copper pennies to spend on candy at the drugstore on Main Street in the tiny Wisconsin town of Barron.  We felt so special as we headed out on our adventure.  Our walk past gardens of peonies and rhubarb, was filled with anticipation of our arrival at the corner Five and Dime.  Through the storefront window, we eyed jars filled with candy dots, jawbreakers, and tiny wax soda bottles filled with pink sugary water, trying to decide which treasures to choose with our pennies.  It was joy…the freedom of the walk, the sweet treats and the love I felt from my grandma!  God knows this about me.  It is the only explanation for why I find pennies on almost every walk.

Walking is simple…just head out the door.  But not all walks are easy.

There is a hill at 2.2 miles into my neighborhood walk.  Not a straight up steep hill, but a long and gradual, lung burning incline.  It is the hill that often factors into my walking decisions…as I think maybe instead of this walk, I should go somewhere flat, go a different direction or not go at all!  I know!  It sounds ridiculous as I write it too!

I have been acutely aware of this hill over the last several days and have been experimenting on how I approach it.  Instead of focusing on the top of the hill, I’ve been making interim goals…walk to the mailbox…walk to the post…focus on the path right under me.  Two to three short steps feel almost level.  I’ve got this.  Don’t think about the next little elevation…focus on this step…the next step…don’t look too far up the hill.  Push a little.  Stop and rest a little.  Cheers for each small bit of progress. It works. It isn’t less hard.  It is just more manageable.

This is different for me.  I have always been a planner and goal setter…until three years ago when multiple myeloma became part of my walk.  Suddenly the future was very uncertain and planning ahead became a mental challenge.  It is my other hill to climb, a long and gradual daily challenge. It is every step, every stop to breathe and every grateful day I get up and get to do it again.

In these three years, I have been blessed with little pain and discomfort, even after life altering treatments and some scares along the way.  Medicine has been good but also underlies unwanted side effects.  My immune system is working hard on too few fighter cells. I challenge my doctors to work for me, to see me as an individual and not a statistic, while appreciating their clinical expertise and the science behind it.  I anxiously wait on test results, staring at the notification of their arrival and pray for the good news of continued stability.

I am not everybody with multiple myeloma.  I don’t fit the profile.  But I have been given this. I have learned to let go of Dr. Google who only visits in the wee hours of morning when in sleepless night, I try to find wisdom or that one magic healing potion.  I have learned that my army of caregivers are my life givers.  Family that forget I have cancer, enlist me to help, love me unconditionally and just go and do life with me!  And I have learned not to think too much about what “might” happen next.  It doesn’t help me.  This is not to say that I don’t think ahead.  I do!  I have a long list of things to do.  I won’t allow this beast of a cancer to scare me from living.  It’s just that I have learned to live differently.  I take each day just like I am approaching the hill…two steps forward…sometimes two steps backwards…sometimes standing still…and take a breath, thankful for each step I take to reach the top of “the hill” on this day.

I have learned that sometimes it takes having the life we know ripped away to find our way.  My grandson took me to see the new Disney movie Frozen II, where this idea is the central theme, “where all is lost, then all is found”.  The enchanting ballad, “All is Found” speaks to me asking “…can you brave what you most fear, brave enough when all seems lost?”

On this new journey, I have learned to be brave and through it I’ve found so much more than I have lost.  I am resilient and content.  I’ve learned to find strength by trusting God in a new way.  He says to “look carefully” at how we walk, not as unwise but as wise, making the best use of time….to understand the will of the Lord.  I get it!  In retrospect, it was time wasted I regret most.  It was holding too tight to things I’ve loved…instead of just simply loving.  It was trusting my own will rather than God’s will. It was looking way far up that hill and missing the beauty right under my feet.

I celebrate all that is these three amazing years.  I live with joy!  I live with hope.  And right now, I’m heading out to climb that damn hill!

“All Is Found”
(originally by Evan Rachel Wood)
(from “Frozen 2” soundtrack)

Where the north wind meets the sea
There’s a river full of memory
Sleep, my darling, safe and sound
For in this river all is found
All is found
When all is lost, then all is found

In her waters, deep and true
Lay the answers and a path for you
Dive down deep into her sound
But not too far or you’ll be drowned

Yes, she will sing to those who’ll hear
And in her song, all magic flows
But can you brave what you most fear?
Can you face what the river knows?

Until the river’s finally crossed
You’ll never feel the solid ground
You had to get a little lost
On your way to being found

Where the north wind meets the sea
There’s a mother full of memory
Come, my darling, homeward bound
Where all is lost, then all is found

All is found
All is found

This is living with cancer!

“She is clothed in strength and dignity and she laughs without fear of the future.”   – Proverbs 31:25

Without loss or sacrifice, it’s hard to appreciate what we have.  I know this.  And so I celebrate what I have on the two-year anniversary of my stem cell transplant.

Since my transplant, I’ve welcomed two granddaughters, Mila Grace and Vivian Jane…adorable, strong, happy and surrounded by love.  I delight in the joy my grandson Reid gives me, who at four (almost five), loves to read and sing, swim in the lake with me and makes me laugh.  I cherish each walk and swim I am able to do.  It makes me stronger and is a platform to  raise awareness and money for the research needed to find a cure for multiple myeloma.  I have emptied closets and emptied the burden that the accumulation of stuff brings with it.  I’ve learned to sit still and simply enjoy living between the sunrises.  My hubby and I have surfed and walked on beaches in Hawaii and played golf in the desert.  I learned to pilot the Millennium Falcon.  I’ve quilted memories for family and friends with renewed creative energy.  Celebrated two more birthdays and two more anniversaries.  Had every hairstyle, from bald, to curly to straight!  And, I officially retired from a fulfilling career at Boeing.

Hope is my fuel, rooted in faith that God has orchestrated the perfect symphony that is my life.  It is a beautiful arrangement of fun, love, and peace that comforts me…I have no fear of the future.  So this new journey continues and at two years post-transplant, I can confidently say…life is good…it is very, very good!

Two years…





































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 Ua ola loko i ke aloha

Kapa’a, Kauai, March 2019

His music washes over me like a gentle wave.  Her storytelling, sweet and rich, connecting the man, the music and the passion.  They complement each other…knowing each rhythm and beat of life in the other.

Slack key guitar and ukulele.  The evening, the music and the moment…a gift.

It was more than music.  It was emotion.  It was love.  It was my heart beating.  I was inspired, captivated.  I felt its healing touch.

In the music, I am reminded of the importance of listening to the heart, the soul, the simplicity and beauty of life.  In his music, I see and hear this.  In each measure…the islands, the whales and dolphins, the birds, the majestic, the turquoise sea, Mike’s hand to hold.  Unexpectedly, I feel it all and see it all as my own…pure…a gift from above.

It is said that slack key came to the islands by Mexican vaqueros (cowboys) who came to the islands to teach Hawaiian ranchers to manage cattle and who brought their guitars and music. When their work was done, they left the guitars as a gift.  The islanders knew little of the structure of music but much about how to make beautiful sounds.  Slack key guitar developed using multiple tunings.  Technically very challenging, these multiple “tunings” that are sometimes undocumented or family secrets, require complex fingerings and techniques, and pure passion to play.

He says young people are not interested in learning slack key guitar these days, for it is too slow and too difficult.  This musical art form was passed on within families… from an elder master…to a chosen child.  As time and patience for learning, practicing and connection to tradition fade, the music may as well.

I hope he is wrong…maybe they just don’t hear the music calling them yet.

It is his mission to preserve and share its history.  I feel I need to share their story with you.

Let the music give you peace.

Let it inspire you to live…dream…love…create beauty…make your own kind of music.

“Ua ola loko i ke aloha”   –  “Love gives life within”

 

Find Doug and Sandy McMaster on Spotify, Amazon Music, iTunes

http://mcmasterslackkey.com/slackkeyfaq.html

 

 

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“Remember”

An unremarkable Saturday, my usual running around.

Radio on, cruising and ruminating on my to do list.

And so grateful that I am still able to do just this…the routine…the mundane…the unremarkable.

I have learned to push back on the inevitable creep of fear and uncertainty that sneaks in to undo me.

But not always.

Today was one of those days…some unwelcome worry…until I heard the music.

An angel tapping me on the shoulder…hey there…I am here…do not fear.

A clear message…I am not on this journey alone…my prayers are heard and I have an army to rescue me from the darkest places of my mind.

“Remember” and “Rescue” from Lauren Daigle’s new album, “Look Up Child” are a powerful reminder of the faith that grounds me and keeps me strong and filled with hope even in my trials.  Lauren’s soulful vocals, inspiring lyrics and simply beautiful arrangements are a gift from above.  I hope you find this album as inspiring as I do.

“In the moments when we don’t have it nailed, when we don’t have it figured out, what is the one thing that we could do? Look up.” – Lauren Daigle

Remember

Lauren Daigle

In the darkest hour, when I cannot breathe
Fear is on my chest, the weight of the world on me
Everything is crashing down, everything I had known
When I wonder if I’m all alone

I remember, I remember
You have always been faithful to me
I remember, I remember
Even when my own eyes could not see
You were there, always there

I will lift my eyes even in the pain
Above all the lies, I know You can make a way
I have seen giants fall, I have seen mountains move
I have seen waters part because of You

I remember (I remember) I remember (I remember)
You have always been faithful to me
I remember (I remember) I remember (I remember)
Even when my own eyes could not see
You were there, always there

I can’t stop thinking about
I can’t stop thinking about
I can’t stop thinking about
Your goodness, goodness
I can’t stop thinking about
I can’t stop thinking about
I can’t stop thinking about
Your goodness, goodness
I can’t stop thinking about
I can’t stop thinking about
I can’t stop thinking about
Your goodness, goodness
I can’t stop thinking about
I can’t stop thinking about
I can’t stop thinking about
Your goodness, goodness

I remember, I remember
You have always been faithful to me
I remember (I remember) I remember (I remember)
Even when my own eyes could not see
You were there, always there, with me

Songwriters: Lauren Daigle / Chris Tomlin / Ed Cash / Jason Ingram / Paul Mabury

Rescue

Lauren Daigle

You are not hidden
There’s never been a moment
You were forgotten
You are not hopeless
Though you have been broken
Your innocence stolen

I hear you whisper underneath your breath
I hear your SOS, your SOS

I will send out an army to find you
In the middle of the darkest night
It’s true, I will rescue you

There is no distance
That cannot be covered
Over and over
You’re not defenseless
I’ll be your shelter
I’ll be your armor

I hear you whisper underneath your breath
I hear your SOS, your SOS

I will send out an army to find you
In the middle of the darkest night
It’s true, I will rescue you
I will never stop marching to reach you
In the middle of the hardest fight
It’s true, I will rescue you

I hear the whisper underneath your breath
I hear you whisper, you have nothing left

I will send out an army to find you
In the middle of the darkest night
It’s true, I will rescue you
I will never stop marching to reach you
In the middle of the hardest fight
It’s true, I will rescue you

Oh, I will rescue you

Songwriters: Jason Ingram / Paul Mabury / Lauren Daigle

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The Caveat

One of the side effects of living with cancer is the magnification of experiences.

I see with clearer eyes, hear the noise, the hush and silent voices and feel with a depth that draws tears, laughter and hugs instantly.

I am acutely aware of time, careful to invest in it with heart and mind.

I feel incredibly wealthy, humble, grateful.

But it has not been easy and I am acutely aware of the seriousness of my situation.

It’s been two years since my diagnosis.  Eighteen months since my bone marrow transplant.  I have spent the last year in transition hibernation.  Processing the business of cancer.  Adapting to life with a caveat.

A caveat is not a bad thing.  It is a motivator.  Paul Allen is my hero, a man with a caveat.  His, catapulted him to prosperity, generosity and creativity beyond imagination.  Of course, he had the means, but more important, he had the caveat…an underlying “warning” to get moving…that life is precious…that every day matters!

Multiple Myeloma is not curable.  Even a transplant is an incomplete answer.  But it has proven to boost survival rates.  It is hoped to restart one’s own stem cell production and function.  I am fortunate that my transplant has kept me stable.  Eighteen months of hopeful watching.  There is routine.  Blood tests in tired veins, shots that burn and leave spidery trails to nowhere, sleepless nights and long naps.

I suppose it is remission. But more…it is my caveat.

It is my motivator.  Empowers me.  It has made me better.

As the new year begins, I reflect back on the last two years.  I have made the best of living.  Loving on my family and my sweet grand babies, swimming miles and then a special mile for a cure (and raising $2500…thank you friends and family), adoring my friends who pray with me and make me laugh and make me cry and make me better, stitching memories into quilts, using my finest linens and china, walking hand in hand on the beach with the love of my life, finding the heart in each beat of music and the joy in the story it tells, lingering in the stillness of the lake at dusk, marveling at each new garden miracle, strengthening my faith and trusting His plan for me, celebrating the mundane as well as the amazing, sitting still and moving at Mach speed.

And yes, I have those days…but the “why me” doesn’t linger long. I remember my caveat…for the good it is.

Bring on 2019…bring on year three…bring on new surprises and new opportunities…new hope…bring on the next chapter in this new journey!


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Barking at the Moon

Grandma benefits include watching kid movies with the little ones!  I’ve seen “Moana” at least 25 times, and many, many other classics of course, but the one that I have slowly fallen in love with is “Bolt”.  It’s a story about a girl and her dog, Bolt, who are the “actors” in a superhero cartoon.  The adorable dog has a lightening bolt emblazoned on his side and is the girl’s partner and protector.  Bolt lived his whole life on the set of his action TV show, where he believes he has superpowers. When separated from the studio by accident, he meets a female alley cat named Mittens and a hamster named Rhino who help him on his journey to find his way home. Along the way, he learns that he doesn’t have superpowers and that the show is not real.  Spoiler alert…in the end he becomes a real life hero…why wouldn’t he!?

The music is charming and I have fallen for the mangy cat and her ballad, “Barking at the Moon”.   It is a sweet reminder that no matter where I am on this new journey, home is all I need.

“Barking at the Moon” by Jenny Lewis

I have got so much to give, I swear I do.
I may not have nine lives, this one feels brand new.
Yes I’ve lived a good one.
I have tried to be true.
There are some things I never realized, till I met you.
How the wind feels on my cheeks
when I’m barking at the moon.
There is no home like the one you’ve got, cuz that home belongs to you.
Woo Woo! Here I come.
Woo Woo! Back to you.
There is no home like the one you’ve got
cuz that home belongs to you.

Well I was in trouble, bad.
I was so confused.
I may not see in color babe, but I sure can feel blue.
I have been a lot of things, they may not all be true.
My experience was so mysterious, till I met you.
Now the sun will rise in the east
but I’m barking at the moon
There is no home like the one you’ve got
cuz that home belongs to you.
Woo Woo! Here I come.
Woo Woo! Back to you.
There is no home like the one you’ve got
cuz that home belongs to you.

There is no home like the one you’ve got cuz that home belongs to you.

There is no home like the one you’ve got, cuz that home belongs to you…

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“Something Wild”

There is no greater way to move me than the pairing of powerful words and creative music!  My latest obsession is with rock violinist, Lindsey Stirling.  Her story is one of persistence and passion.  In a competitive and cluttered music industry, she built her musical success by way of YouTube, where her creativity and unique gift has been rewarded with millions of followers and many awards.  She is quirky, fun and a ridiculously talented violinist with a determination to follow her passion!  I love this about her!

The song “Something Wild” is a favorite of mine.  Love the reminder…especially on this new journey…to remain strong, face my fears and be true to the person I am meant to be…

“If you face the fear that keeps you frozen
Chase the sky into the ocean
That’s when something wild calls you home, home”

Enjoy…..

Something Wild

Lindsey Stirling

You had your maps drawn
You had other plans
To hang your hopes on
Every road they let you down felt so wrong
So you found another way

You’ve got a big heart
The way you see the world
It got you this far
You might have some bruises
And a few of scars
But you know you’re gonna be okay

And even though you’re scared
You’re stronger than you know

If you’re lost out where the lights are blinding
Caught in all, the stars are hiding
That’s when something wild calls you home, home
If you face the fear that keeps you frozen
Chase the sky into the ocean
That’s when something wild calls you home, home

Sometimes the past can
Make the ground beneath you feel like a quicksand
You don’t have to worry
You reach for my hand
Yeah I know you’re gonna be okay
You’re gonna be okay

And even if you’re scared
You’re stronger than you know

If you’re lost out where the lights are blinding
Caught in all, the stars are hiding
That’s when something wild calls you home, home
If you face the fear that keeps you frozen
Chase the sky into the ocean
That’s when something wild calls you home, home

Calls you home
Calls you home
Calls you home
Calls you home

If you’re lost out where the lights are blinding
Caught in all, the stars are hiding
That’s when something wild calls you home

If you’re lost out where the lights are blinding
Caught in all, the stars are hiding
That’s when something wild calls you home, home
If you face the fear that keeps you frozen
Chase the sky into the ocean
That’s when something wild calls you home, home

 

Songwriters: Taylor Bird / Peter Anthony Hanna / Andrew Ross McMahon / Lindsey Stirling