It's Coming....

Advent is perhaps, my very favorite time of year. It comes from the Latin word which means "coming".

Each day of December we read the beautiful stories of the Old Testament, remembering the goodness of our God on behalf of His people....and we turn our hearts to what has come and is yet to come.

We anticipate the glorious, magical celebration of our Savior....Emmanuel, God With Us. Our God, who sent His Son to take on flesh and dwell among us.

Jesus lived and breathed our world's brokenness so that He could exhale healing upon all who would gaze upon Him in desire to be whole. 

The Holy Spirit, precious gift of the Father, sent to counsel, to teach, and to comfort.

No matter what pain has found its way into your home, or your heart, or your soul, advent is the reminder that healing and hope are for YOU.  They are for ME. It does not always fix things...but even in the midst of pain and hurting, it is the reminder that our God thought we were worth fighting for. He did not allow the darkness to win. He sent Light into the world to push back the darkness.  And so even in our aching brokenness in this life, we too can push back the darkness if we fix our gaze steadily upon the LIGHT.  There are some pains in this life that truly leave us limping, barely catching our breath....but oh! Advent is the reminder that He does indeed have a secure plan to get us to that finish line, where all brokenness and darkness is swallowed up by healing and light.

"The answer to deep anxiety is the deep adoration of God.

And the greatest gift we can give our great God is to let His love make us glad."--Ann Voskamp, The Greatist Gift

And one last quote, from our children's reading:

"Look for the little child everyone else forgets.  Look for that hunchbacked old man no one else remembers. Look for the small, broken cracks in the world, in hearts, that would be easy to walk right by--and right there, slip in a little word that grows great courage.  Miracles happen whenever we speak words that make souls stronger..."--Ann Voskamp

Yesterday was a long day of travel. There will always be migraines and deadlines and expectations and demands in this life.... But this morning, I desire to lose all anxiety in the deep adoration of my God.

Today, I want to watch miracles happen and speak words that make souls stronger. I want to bring light into the darkness, whether it's by lighting a candle, giving a smile and a hug, listening more than I talk, smiling more than I complain, or just by choosing joy instead of drowning in the demands all around me.  It's these small victories that gather up into great ones. 

Today, I want to get lost in the wonder and magic of the One who has come: Jesus our Savior.  And I remember, that He is coming again....to exhale healing upon my brokenness, and make all the wrong things right.

It's coming. HE is coming.

May you be captivated by the light and warmth of our Savior today!!!

Great News!!!!!

Elijah had a great exam today-he did not need any additional treatment beyond his exam!!!! This has not happened since before June, so this is a very big deal!!!! No laser, no chemo!!! There is one tumor that they are watching for growth, but we will return in 5 weeks to check on it!!! 

Hooray!!!!!

Us all bundled up together for our walk to the hospital.

On the walk to the hospital-this is my beloved health food store. I finally got a rewards card a few months back since I just love finding healthy (and not so healthy) food there. I went last night and grabbed a chocolate bar.

Cozy.

Undone....

It's dark here in NY, but Elijah and I made it safe and sound.  The last trip was difficult in so many ways that I almost had to push myself to return. But of course, I knew I would get Elijah here, no matter what.

Well. Listen to this. Not only were the flight attendants SO kind to me, one of them in particular even held Elijah so I could go potty and was just particularly friendly with Elijah. She told me about this delicious soup at a Greek restaurant in the Chicago/Midway airport. I, however, only had 20 minutes until my next flight was boarding so I knew I wouldn't have time to get any food. I was really hungry! But I just figured we would forge ahead until getting to RMH.

Well. After a few minutes in my seat on the second flight, as other passengers were boarding, that flight attendant came and brought a cup of soup that she purchased to go, and found me on my second flight and brought it to me. I cried like a baby as I felt so overwhelmed by this generous kindness. And truly, I recognized it as the Lord's provision!

Well.  A friend of mine here in NY has been so kind as to store a stroller for me so I don't have to lug one back and forth. Not only did he keep it for me, but he walked it right on down and delivered it to the RMH for me!!! I also recognized this as the Lord's provision, because I was so wiped out from the travel today, and it just a felt like an extra special kindness.

And to top it all off.  I normally write letters to each of the kids when I go somewhere. Even if it's just for the day, or what not.  I try to encourage them and assure them of how much I love them.  But this trip, we had so much going on that I just wasn't able to write letters.  I was so sad about this. Well. They all wrote letters for me!!!! Just as I was getting ready to lay my head down tonight, I read each letter, and all I can say is......wow. Thank you, Lord, for these amazing people. Thank you, Father in heaven, that you frequently choose to show your love by using the willing hands of your people.  Thank you for those hearts who joyfully accept your invitation to be a messenger of love.  This day was long and had hard moments....but it was all eclipsed by your lovingkindness. Your Word says that your lovingkindness is better than life.  Thank you for a taste of it.

Goodnight all! It's early to bed and early to rise for Elijah's appointment tomorrow!

'Twas the Night Before a Trip....

And all through the halls,

All the creatures were stirring,

Shaking ceilings and walls.

Mommy was packing 

And checking her list

To make sure nothing was left amiss.

The house looked as if a tornado had hit

With crumbs on the floor

And nowhere left to sit.

The kids were happily playing a game

Pretending to fly to NY on a plane

Southwest was their airline of choice, of course

For they had heard stories from a reliable source

Tears streamed quietly from momma's eyes

She hated the part where they all said goodbye 

But their sweet little baby needed specialty care

There's a reason they call her a "mama bear"

So whatever is needed, whatever the cost may be

We will get the baby to NY to be seen

And even though mommy can only be in one place

Her heart and her love multiply; it's a grace.

Early tomorrow we will catch our flight 

So to all: please keep praying! And have a great night!

Thankful....

Turkey-covered in gravy and nestled in next to sweet potatoes and mashed potatoes and homemade stuffing next to yeast rolls and green beans.....with the tart pop of color the cranberry sauce adds....

The deep, rich smells that linger in the crisp, cool air....

The leaves turning colors, and crunching beneath feet...

This is one of my very favorite times of the year. There is something absolutely magical about this time of year. Sunday we begin our advent reading: snippets of a story read every evening in anticipation of our Savior's birth.  Cozy fires and long days of reading while drinking something warm.  Baking and laughing and family and friends.

This year threatens to try and steal the joy....as I think about doctor's appointments and oral surgeries and trying to pay the mortgage, and....cancer.  Sigh. No matter how much I want to set that little "c" word off to the side, it still wrecks havoc by interrupting "our" schedule and whisking mom away from our nightly reading....

I'm so thankful that the last couple of months, I have been studying Psalm 27.  I love how David tells himself, demands of himself, really:

"Therefore I will offer sacrifices of joy in His tabernacle. I  will sing, yes, I will sing praises to the Lord."  Vs.6

Sometimes, even in this Psalm, joy is the natural outflow of our hearts as we rejoice in being delivered out of a trial.  But sometimes....joy is a sacrifice. Sometimes it is costly.  Sometimes we have to tell our own hearts "I WILL SING PRAISES."

I love that scene in the movie Big Hero 6...everyone is trapped and Hero reminds them all that they need a new perspective.  They need to look at the situation differently.

So, while I will miss some of our reading as I head to NY next week, and traditions get ruffled by appointments and such...

I need a new perspective. I need to look at my situation differently. There are always things to be thankful for! And quite honestly....I think the trials of this year have made that list of things that I'm thankful for longer.  

I'm thankful for each little face that looks to me as mom.

I'm thankful for adventure and the experiences we have had as a family.

I'm thankful for deep discussions and the chance to walk with my kids through hard things.

I'm thankful for friends!

I'm thankful for excellent medical care and access to facilities that treat my son's rare cancer.

I'm thankful that my husband had the chance and was willing to work Thanksgiving day because he knew we needed it.

I'm thankful for my boy, who is out on the couch reading The Lord of the Rings to his younger brothers....and that they were all so excited to get up this morning and resume reading.

I'm so thankful for my girls, and our trips to Starbucks, our experiments with hair and our laughing for days.

I'm thankful for our homeschool co-op, our church, and all the places where we get to see ordinary people living extraordinary lives.

I'm thankful for the people on both sides of this country that have staggered me with their kindness and care.

I'm thankful for the smiles on faces when we have a good dinner.

I'm thankful for Team Pumpkin

And Team Pecan)

I'm thankful every time we light a candle, declaring that Jesus is the light of the world....and reminding me that the small things really do matter.

I'm thankful for grandmas who love big-with both arms and a heart overflowing.

I'm thankful for prayers that come from tiny people with huge hearts-I'm always undone when I hear my children pray.

I'm thankful for the many who have joined our family through prayer, support, and concern for us.

(I am realizing that this list here could go on and on and on....because truly there is so much to be thankful for!!!)

So, while I tell my heart: I WILL SING PRAISES.... I find myself FULL of Things to be thankful for. But this year, I am both thankful and astounded by the God who sings over me:

"The Lord your God is in your midst, the Mighty One, will save; He will rejoice over you with gladness, He will quiet you with His love, He will rejoice over you with singing."

Zephaniah 3:17

Today, I will sing praises to the God who is IN. MY. MIDST. 

I can't always see Him or feel Him. But He is there, rejoicing over ME! 

For my family....and for all that I love, my Thanksgiving day prayer is that I would   remain so close to His heart, that His song, the one He is singing over me, would become my own. That my thankful heart would sing out and invite others into the presence of the God who is in our midst.

To the woman in 22B

Dear Woman sitting in seat 22B,

     I'm so sorry we weren't properly introduced. I wish you could meet me under different circumstances, rather than on a flight from Dallas to Los Angeles.  You might have even liked me if we had met in a restaurant or on the subway. What you see is a young woman with a fussy baby sitting near you.  (ha! If you only knew. Not only do I look younger than I am, and have more kids than normal, but there aren't words for how this year has aged me.) 

     You clearly show your utter annoyance and displeasure with me by huffing, puffing, and sighing every time my baby cries out. Which, I'll admit, is more frequently than even I would like.

I'm standing up in the middle of a plane, perched in front of the only space possible which is the restroom in the middle of the plane. I squeezed myself up against the seat opposite you every time someone tried to get to the restroom because I can already tell that you loathe sharing space with me.

     I stood, swaying with my baby, trying to soothe him.  I prayed silently....asking God for help and wisdom, because quite honestly, it had already been a LONG day.  I had been up at 4am feeding the baby, and then got up at 5am for the day. I hid in the bathroom so I could pray and read my Bible and not disturb the baby after getting him back to sleep.  I cleaned our room at the Ronald McDonald house so we could check out. I had already done the flight from NY to Dallas and I was worn out.

     I decided to thank you for sharing your space with us, albeit begrudgingly. You interrupted me....and I mentioned that you seemed disturbed since you repeatedly sighed with displeasure.  When I explained that my baby boy has cancer and was flying for his treatment, you said words that shocked me. 

     "I didn't sign up for this," you said, referring, I suppose, to a flight with a fussy baby and a momma rocking him back and forth.

      Well.  Neither did I. I never signed up for spending my postpartum weeks deciding whether to remove my son's eye or to flood his body with poisonous chemotherapy.  I did not request to forego counting milestones like clapping and crawling, in order to count tumors or make treatment decisions.  And I can assure you, every single part of my being would rather be at home making dinner for my family than on a plane with my baby so sad and uncomfortable.

     Even though I didn't "sign up" for this...it was sifted, through the hand of the Creator, for me.  

     Our meeting is really an instrument of grace.  It's hard to see that, and even believe that at times.  That's what faith is: believing that God exists, and that He rewards those who earnestly seek Him. Even when evidence suggests the contrary.

    Our meeting reminds me that there is always more going on than what we see. It reminds me that every person I see has a story that I can't see.  It reminds me to be kind when all I see is the hard outer shell of someone hurting.

    And it also reminds me just how good I've had it. I have sat by so many who have been kind, understanding, and sympathetic. It causes me to be so grateful as I returned to my seat, tears streaming down my face, as the gentleman next to me started playing with a fussy baby and even got him to laugh.  It reminds me to be grateful for the sweet angel I met named Margaret, who not only showed extreme kindness and empathy on the flight from NY to Dallas, but even offered to be a new friend for me in the city. (The kindness preceeded the pain...I did notice that.)

     I'm sure that I could have handled  our meeting in a better way. I'm learning. I'm still figuring out how to navigate life in the midst of some heavy things. But in the end, I know even our meeting and my tears were all part of my journey. And who knows? Maybe in some small way, I have been a grace in your life too...and perhaps seeing a momma with a fussing baby will never be the same for you again.  

Sincerely,

The momma with the fussy baby

Elijah's exam

It's so hard, because it can start to feel a little like one step forward, one step back.

But that is why it is so important for us to think: marathon, not sprint!  This will be a long road for Elijah. And with his genetic

mutation, it just means he will need to be watched for the rest of his life.  Today's appointment was a good reminder, though. All of the time, effort, and resources going towards his treatment right now is so worth it. For moments like these:

When he does his nose-crinkle smile because he can SEE me!!!!! :-)

So, no new tumors this time!!! One of his old tumors is growing again (not the same one as last time).  This is the one that is in his central field of vision.  So, they need to be careful not to just blast away with laser! But they did treat with laser today, and went back and injected the green dye to hopefully make the treatment more effective.

His doctor gave some perspective: we could absolutely cure him of cancer right now....by removing his other eye.  However, all the time and effort and flights....all the treatments he goes through are because he can see, and we would like to retain that ability to see if it is possible, without putting his life at risk.

Someone asked me at some point in this journey why it mattered so much that he lost his other eye.  Two main things came to mind: one, without his prosthetic, it's like a wound that will never heal. I don't know how to explain it any better than that. It's a constant reminder that something was there, but it has been removed.  There's a void. 

And secondly, if you have ever seen me parent my children....I probably say about 50 times a day, "Look at mommy's eyes." There a connection that happens when you look someone in the eye.  

I love that Elijah can see-especially since his first few months, he wasn't very responsive and I wasn't sure if he could see.  But we just take each look, each nose-crinkle smile response to our faces, as a gift.

There's an old hymn that I sing to Elijah all the time.  The last lines strike me every time:

Be still, my soul; thy Jesus can repay
From His own fulness all He takes away.

Today, we are thankful that he can see with his left eye, and we pray that his remaining eye and vision can be saved.  And we remind ourselves that Jesus is the greatest treasure.

Hope you all have a nose-crinkle smile kind of day.

My sincere apologies....

To all who are staying at the Ronald McDonald house, especially those on the same floor as Elijah and I. :)

It's always a rough night after all the traveling, adjusting to a new time zone, and preparing to be up early (with no food) for anesthesia.  Elijah did NOT want to sleep in his crib. He also didn't want to sleep much with me either, but did better that way. :) 

By 5:30am, I decided we just needed to get out and walk. As soon as we were moving, Elijah did much better. Now, we are just waiting for his appointment.

Good morning New York!!!! There's something so comforting about the sunrise.  It's like a breath-taking reminder that there is so much more going on than just you and your life. It is a reminder that whatever darkness or difficulty the night has brought, the morning will come with new light and perspective.  And everything that has seemed still and inactive bursts forth with life.

Good morning!

Goodnight moon...

Well, after a long day of travel....it's time to say goodnight. 

Up early for Elijah's EUA (exam under anesthesia) tomorrow.

Goodnight moon.

Run with endurance.....

Elijah and I are just getting ready to board our flight. Elijah had a rough day yesterday and he is tuckered out!

I saw this sign at the airport on our very long walk to our gate:

1953 was the first commercial transcontinental flight between New York and LA.  

In a strange way, it made me think of all the many who have gone before me. Maybe they were traveling for different reasons, but they made this trip too.

It reminded me of this verse in Hebrews:

Therefore, since we are surrounded by so great a cloud of witnesses, let us also lay aside every weight, and sin which clings so closely, and let us run with endurance the race that is set before us....

I'm surrounded by so many who have gone before me. They remind me to run with endurance the race that has been set before me.

It was hard to say goodbye this morning. Standing in the middle of a quiet room with the kids sleeping and still....it's always hard to leave them, even if only for a few days. I miss them already.

But this is the race that has been set before us right now.

Oh Lord. Give me endurance to run in way that gives you honor.

Creative....

So, it's dress up night for youth group

Here is Mary Poppins and the Holy Bible. I love the creativity of these kids. This was fun. :)

I'll see you later....

Today, one of the best friends I have ever had on this earth, along with her husband, her eight children and her dog, packed up and drove away, headed for Maine.

After almost 28 years of faithful law enforcement service, her husband retired. They sold their house here in Ojai, California after only 5 days on the market. They purchased a larger home on 10 acres in Maine for much less. :)

So, while I'm very sad to be saying "I'll see you later" to my friend, I'm so excited for them and the adventure that is beginning.  They get to have two parents home!!!! This is truly a joy and I'm so excited to see what adventures God has waiting for them ahead.

Today is hard though. In the time we have been friends, we have welcomed seven children between the two of us. (I'm counting Judah since he was just born when we met.) Jennifer Pfleging, I am so honored to call you my friend and I will miss you.  Until I see you again.

Birthday Boy

Dear Noah Benjamin,

     HAPPY BIRTHDAY!!!! You are 9 years old today!!! The time has gone by so quickly.  We moved back to Ojai from living in the mountains of San Bernardino just in time to wait for your arrival. Hahaha! I started having contractions and we thought you were coming soon!  Both Emma and Caleb had come two and a half weeks early, so it seemed pretty reasonable to expect that you really were coming.  But 26 days later, with contractions on and off, (and one week past your expected due date), the doctor told me there was no choice but to induce labor.

     They even gave me a chance in the hospital by breaking my water first. The contractions came, sure and steady...until your heart rate started dropping and they told me to lay on my left side. All contractions stopped.  You are the only baby that I have had pitocin with during labor, but 2 hours later you were out and in my arms. (Side note: they think your dates may have been wrong and you were born at 39 weeks gestation.)

   You have always been on your own timetable. You have a different rhythm and pace sometimes.  You didn't walk until about 16 months, and at two they wanted you to begin speech therapy because you weren't talking much. But we had a feeling you were just on your own schedule.  And you were!  You are a very bright boy, excellent in your work.  

(This is when you built "Toothless" from How to Train Your Dragon out of Legos)

     In this world of hustle and bustle...you may find yourself hurried along by those around you.  But, you, my dear boy, were created with a different rhythm.  Oh yes, there will be times when you have to work quickly to get things done.  In the grand scheme of it all, however, you will find that this life passes so quickly.  We are in need of those who might slow the pace, and enjoy the beauty of each moment, rather than rushing on to the next. I NEED you, Noah.  I can't tell you many times I have longed for you to hurry up, only to find myself surprised by the joy of waiting...and discovering something I would have missed.  

     You have an incredible smile and a laughing heart to go with it.  When we took you to see the comedian Tim Hawkins the other night, I couldn't help but be just as entertained by your uncontrollable laughter in your seat.  I'm pretty sure your stomach will be sore in the days to come because you laughed so hard.  Don't stop laughing.  Times will come in this life that are painful and difficult to understand, and you have been gifted with a special ability to laugh and bring joy.  This world needs you and your million dollar smile.  It needs your goofy jokes.

     And finally, the thing that perhaps characterizes you the most, is your loving spirit.  I think you hug me goodnight about 3 times every night.  You are always the one to notice when grandma is leaving after having stopped by for a visit, and you are the first one to throw your arms around her because you love her so very much.  You love BIG.  Noah. This world needs men who can love BIG. There are hurting, broken people all around who need the only kind of love that can heal....the love that comes from above.  And that love is often best delivered by those who are willing to HUG, to LISTEN, to SLOW DOWN, to CRY and to LAUGH with another.  

     Jesus knew how to slow down.  He was on a different time table too--He was always on the Father's schedule.  He wasn't bothered by the hustle and bustle around Him because He saw that there was more going on than what human eyes could see.  Jesus knew how to laugh.  He knew how to see humor even in hard situations.  And He loved BIG. He lived, knowing his earthly life would end with stretching out His arms in order to show His love.  

     In one of our favorite family books, Tales of the Kingdom, an apprentice juggler found himself struggling against his rhthym. He kept trying to stifle it in order to bring himself in line with all the other jugglers and their rhthym. But it was only as he revealed the rhythm given in his own heart that he discovered the job the King truly had for him--he was a clown!!!!  He was the best juggler of all because his rhthym was different.

"A juggler with the instinct of a clown! Oh, they are rare! They are rare! What a troupe we'll have! We'll bring down the house! We will make the balls dance!"

So the Apprentice Juggler lost his place in the troupe, but found another.  For all who live by the rhthym of the inner timing, which the King approves, find a place in the Kingdom all their own.  More than any other, they live happily ever after.

     Noah. This world needs you.  So keep teaching me how to wait. How to laugh. And how to love.  I am a better mommy because of you and I am so absolutely humbled and honored to learn from you, as well as teach you.  Happy birthday.

For the King,

Mommy

     

Happy Birthday Sweet Boy

     Oh, my darling boy. Ezra Lucas Knight Hester. It was 7 years ago that you surprised us by coming so quickly that you became the first of our children to be born at home.  I must say, that that is just one of the many ways you have changed things in our home and in my heart.

     If it weren't for you, I may have gone on, thinking that I knew a thing or two about parenting. But in His kindness, God saw fit to give me a beautiful, rough-and-tumble, blue-eyed, determined, out-of-the-box, mysterious, tenacious, free-spirited little boy to remind me that every good thing that has happened in the parenting department has been by His grace.  Even when I find myself unsure of what to do or how to do it...I do know WHO I am following and trusting for it all.  At seven years old, you can read pretty much anything-including your science textbook. You like roller blading, skateboarding, and pretty much anything else that requires lots of energy. We still have all the knives in a box up on a high shelf, even though you are not nearly as likely to get into them. You haven't lost your fascination with weapons, although you are learning to use them for more honorable pursuits....I think. ;-). You look up to your brother Caleb SO much. Which is interesting, because your mind works in a very similar way.  You love being a big brother. Even though you have to fight other desires along the way... Protection truly is part of your nature. You will often read to Evelyn, and play with Elijah.  You love cooking, Legos, the trampoline, and so many other things.

     Your heart does not know many limits.  This can be difficult and tricky to navigate at times....but it can also come in handy.  I can ask you to do jobs that the average six year old would not even attempt, much less accomplish, as well as you do.  I love taking you to Costco because you are such a gentleman to load the cart with the big flat of water.

     There are so many things I want to say to you, Ezra. I want to remind you how much I love you, how much God loves you, how great His plans are for you. I want to remind you that your greatest accomplishment in this life will be to serve your Great King and Captain by loving Him and His people.  I want to tell you to be bold and courageous.  I want to tell you that this life is harder than you think....times will come ahead which will make you want to give up or give in. But the God we serve...He is always worth the battle.  As long as there is breath in your lungs, you have a purpose and a mission.

     Listen to what was said about the Ezra of the Bible:

"For Ezra had prepared and set his heart to seek the Law of the Lord [to inquire for it and of it, to require and yearn for it], and to do and teach in Israel its statutes and ordinances."

Ezra 6:10

     Under Ezra's leading and instruction, the people repented! They recognized that they were going the wrong way, and they wanted to stop and start going the way that God has asked of them. Ezra set an example-not of never sinning, but of being sorry over his sin-SO sorry, that he would not continue that way. God gave him faith to believe that there was a better way. He "set his heart to seek the Law of the Lord", which is really the Law of Love.

     Right now, we are revisiting a family favorite series-the Chronicles of Narnia.  It does not surprise me one bit, that as we read, every single moment for you, is about when Aslan will come on the scene.  He is the picture of Jesus Christ, out Good Shepherd. It was said of Aslan that He is not "safe." But He is good.

     This is what I want to tell you most. Following Jesus has been the grandest adventure I have ever been on. But it hasn't always been safe and it has certainly not always been easy. It takes a tenacious heart, one who is set upon the Law of the Lord.  And when things are so difficult that you can't see up from down, and you find yourself where you never thought you could be....remember the face of Aslan. Remember how in The Magician's Nephew, one deep look into His face and his shining gold mane changed everything for all the years to come.  This is how it is with Jesus. HE IS GOOD. Not safe. But good. The grandest adventure ever is following Him.  I am forever humbled and overjoyed to be called your mama. I love you.  

For the King! And the Kingdom!

Love, 

Mommy

     

Big Changes....

This beautiful young lady made me this purple scarf for my birthday to keep me warm in NYC. (My birthday needs a post unto itself).

Seriously, she is so lovely. I can hardly believe she is my daughter.

This was a week of big changes for her! She got her braces, an expander, and must wear rubber bands all at once.

So far, she can't eat or chew, so she's been surviving on smoothies and yogurt. I'm so proud of how she is handling it all, and it's just one more step in her growing up process. 

Braces or not, this girl is a beautiful gift to our family!!!!

Look Mom...

I'm the Great Sphinx!

Can you guess what we are studying?

Ancient Egypt!!! They colored these while I read The Magician's Nephew out loud. 

From Coast to Coast...

Wednesday night I was dazzled by the beautiful city lights as I walked with some wonderful friends through New York.

Elijah and I made our way back to California. The second flight was rough-Elijah was in loud protest for the last half hour or so. Our plane arrived early and Ben got stuck in traffic....

But once we got on the road I couldn't stop taking pictures of the beautiful sunset that our God painted across the sky in Malibu:

There is so much beauty...so much that reflects the goodness and creativity of our God.  

I am amazed by the beauty I have seen in the people we have met along this journey.

So to the amazing people I was honored to spend time with in New York (and those I missed on this trip).... Those who have given of their time, their talents, their kindness, their smiles....who have loved on Elijah and I, eaten with us, and shared smiles and stories....thank you.

To those who have sat next to a momma and her precious boy who wasn't always quiet but has really been through a lot, and have patiently endured load protests as well as squeals of delight...thank you.

To those who have faithfully walked with us and prayed for us-who have given, have encouraged, and have waited for updates on this side of the country (and everywhere in between)....thank you.

It is the beauty of those who bear God's image through loving and supporting and caring for our family in countless ways....it is this kindness that truly staggers me from coast to coast.  My heart is so full of love, and truly thankful for each of you that I consider gifts from above. 

Update on Elijah

Elijah is tuckered out. He didn't sleep super well last night. 

He has no new tumors! That's great news. And the tumor that was treated with laser last month (and were told to expect to treat again this month) looked great and didn't need further treatment.

However....one of his old tumors had some new growth.  Because of its lack of pigmentation, the laser is not quite as effective. So today, they gave Elijah an IV and injected a green dye (called ICG). This helps give color to the tumor so it will absorb more of the heat from the laser.  They also gave him a little bit of pain medicine in the IV.

As you can see, he is sleeping now. We will be back in 4 weeks to see how things are going.

Thank you all for praying!!!

Birthday

As an adult, sometimes special days like a birthday can get buried by real life. They get buried by bills, appointments, unexpected life events (like a baby with cancer)....

Ben Hester. We live a crazy life. We have seven kids and we are doing the cancer thing, and the homeschool thing....

Your birthday day is not at all how I would have planned it. I never would have planned to be across the country with Elijah, going to the hospital, while you and the kids are back at home.

But this is real life. We live a real life. It is messy, unexpected, often unplanned (much to my chagrin), and beautiful.

I remember one of our anniversaries early on...maybe our 2nd? Anyway, I was throwing up, you weren't feeling great. I thought somehow that we had missed out on getting to celebrate such a momentous occasion. But then I realized...This is the real celebration of marriage. It's not always pretty, or fancy. It's not always fine dining and having a babysitter. Really, it's celebrating what God is doing in the midst of the chaos we call life.  And by His grace, He makes beautiful things.

Amidst all our differences, we share the most important common things: we love Jesus, we need Him desperately to rescue us, and by His strength, we desire to love people well.

For your birthday, our boys have been at work for weeks on a special project that they weren't able to complete just yet. But they have worked so diligently, because of their great love for you.

Our sweet girl made a piñata for you and filled it with candy because she loves you (and knows what a sweet tooth you have!).

I'm so thankful that we were able to celebrate together a little early.

But today, even though we are apart, even though it doesn't look like I wanted it to.

I wish you the happiest of birthdays. 

38 looks great on you.  Thank you for doing this crazy life with me.  And especially today, thank you for trusting me to get Elijah what he needs.

And most of all....thank you for loving Jesus. It is the thing I treasure most about you.

Happy birthday. Today, may you know and feel how much God loves you. May you be inspired by that love to love others boldly and courageously. I love you, Ben.

Familiar....

Early this morning, Ben drove Elijah and I to the airport and dropped us off. This time, we just felt like it was best for our family if Ben stayed home (and went to work!). I know he is concerned about me traveling with Elijah on my own.....but we did make it to NY safe and sound. (I know this is due to the faithful prayers of many!)

Some of the sights are becoming familiar. I know, as I am driven past the East River, that soon we will exit 71st and I'm really close to Ronald McDonald.

Sometimes it is sad that all this is familiar...but today, I'm thankful that there is a comforting feeling. I am greeted with joy and hugs by the staff at Ronald McDonald who remember Elijah. I get to see familiar families that I've met before on previous trips, and I know how check in goes.

I know that we are going to go to bed early, wake up at 2:30am for Elijah's last feeding, and be at the hospital at 6:30am.

I'm anxious to see how Elijah is doing.  And despite the crazy circumstances and the stress involved to get here....I am just so thankful to be here. Elijah is receiving such great care, and tomorrow, we will know a little better how he is doing.

Getting ready.....

Even though Hurricane Joaquin has so graciously taken a turn eastward.... We still found ourselves highly unprepared for the cold and wind (and rain!) that may greet us in NYC on Monday.

I usually walk to the hospital on Tuesday morning for Elijah's appointment, so I needed to be sure I could keep the little guy cozy.

They were so kind to us at Patagonia, even giving us a coupon off our purchase. And since we got a 2T, hopefully Elijah will be cozy for months to come.

I Will Trust in You....

One of my favorite songs right now:

When you don't move the mountains

I'm needing you to move,

When you don't part the waters

I wish I could walk through

When you don't give the answers

As I cry out to you

I will trust, I will trust, I will trust in You

https://m.youtube.com/watch?v=n_aVFVveJNs

A week from tomorrow, we will head back to NYC and check up on Elijah. I'm so thankful to go and see what's going on and how he is doing.

My foot is healing and I can walk again! We felt that a second opinion was needed in the dermatology department, so I headed up to Santa Barbara and met with a lovely woman dermatologist. The biopsy on my arm came back as: pigmented spindle cell nevus of reed. It is a benign lesion....but so clinically similar to malignant melanoma that 1) many pathologists can't agree on it and 2) the treatment is just to have it completely excised.  Since it was not completely removed in the biopsy, I'll go back at the end of the month and have it completely removed.

She also felt that I have "atypical mole  syndrome", meaning....quite a few moles  that look *atypical.*. I really just thought I had lots of freckles, some darker than others.  She picked two more to biopsy and I am still waiting on those results.

More waiting. :-). 

But it is sweet to have a good song to play while you wait.  I love singing to the Lord, reminding....telling my own heart that I will trust in Him.  There's no where else for me!

L.A. Day....

I took Elijah down to LA to have some work done on his prosthetic. He has gotten it out a few times (like, during lunch at our homeschool co-op!).  It was frequently rotating the wrong way, and it was time for it to be built up a bit.

They are so fantastic. Not only is the ocularist gifted in his work, but they all love Elijah and are so kind to him.

It turned out to be a most-of-the-day trip, but we are so thankful things went well, and that his prosthetic is more stable now.

(Big boy! Sitting in the exam chair! He actually sits on my lap so I can hold his head against my chest while they remove his prosthetic)

Eye Fight to Win

Immobile

This is Ben pushing Elijah and I around Children's Hospital in a wheelchair.

I was going to post a picture of my swollen, infected foot but I decided against it. Suffice it to say....I literally cannot walk on it at all. I tried crutches, but it was becoming painfully clear to us that I just wasn't going to be able to get around on my own. Thankfully, Ben was able to come and push us around the hospital in a wheelchair. Hopefully the antibiotics will do their work and I'll be back on my feet soon!

Hooray!!!!!

Elijah's MRI was all clear!!!! (Well, except for the tumor in his left eye that we already knew about.)

This is great news and we are so thankful!!! 

If I rise on the wings of the dawn....

9If I rise on the wings of the dawn,

if I settle on the far side of the sea,

10even there your hand will guide me,

your right hand will hold me fast.

Psalm 139:9-10

We left early this morning and are on our way down to CHLA for an MRI, blood work, and a visit with Elijah's oncologist. Ben ended up taking off work to drive us down, because one of my skin biopsies got infected and I can't walk.  Not exactly how I planned for things to go, but I'm very thankful to have Ben with me nonetheless.

The minute I walked out the door, I heard this verse in my mind. I'm so thankful His right hand is guiding us and holding us today.

Waiting....

One of the (many) books I love is Dr. Seuss's Oh! The Places You'll Go. I really do find it contains some deep and sweet thoughts, but there is one point at which I must disagree with him.

He calls "The waiting place" a most "useless" place:

You can get so confused
that you’ll start in to race
down long wiggled roads at a break-necking pace
and grind on for miles cross weirdish wild space,
headed, I fear, toward a most useless place.
The Waiting Place…

…for people just waiting.
Waiting for a train to go
or a bus to come, or a plane to go
or the mail to come, or the rain to go
or the phone to ring, or the snow to snow
or the waiting around for a Yes or No
or waiting for their hair to grow.
Everyone is just waiting.

Waiting for the fish to bite
or waiting for the wind to fly a kite
or waiting around for Friday night
or waiting, perhaps, for their Uncle Jake
or a pot to boil, or a Better Break
or a string of pearls, or a pair of pants
or a wig with curls, or Another Chance.
Everyone is just waiting.

I am not very good at waiting.  I much prefer action-productivity!  But life has taught me that some of the deepest, most holy work happens when I must wait.  Whether it is waiting for the plan to unfold, or the test results to come in...waiting shows us what is really lurking in the deep places of our hearts. Is it fear? Is it faith? Or, most likely, some combination of the two.

This week, I am waiting on the results of two skin biopsies that were sent off last week.  I am also waiting for Wednesday to hurry up and come, since that will be Elijah's 6 month MRI to make sure there are no tumors growing in his brain.

And while this type of waiting makes me long for the moments when I was just waiting for the blue stuff to sit in the toilet long enough until I can scrub....

Or waiting with a little person who is learning to use the potty (oh wait! We are doing that too!!!)....

I remember what God has taught me about waiting. Waiting on test results, or circumstances is always exhausting.  But there is a waiting that actually renews our strength.

So maybe, just maybe, that is what Dr. Seuss is saying after all.  There is a waiting that leaves us weary and exhausted-anytime we are waiting on our outward circumstances to give us inner peace.  But there is a waiting upon the Lord, which calls us to worship even while we wait. No matter what the outcome, He is still worthy of the worship offered in the waiting.

I can't say that I have mastered this by any means. But this week is another chance to practice. :-)

Like a Bridge Over Troubled Water

We saw this beautiful bridge in Central Park on one of our many walking adventures. Poor Elijah, the travel is hard for him. When he ends up really fussy, the best course of action is to just start walking and to keep walking. This was from a good two hour walking session. 

Before cancer, and laser treatments, and chemo....it had been more than a decade since I had been on a plane.  I am not an experienced traveler by any means.

I had met a few people, who, upon hearing that we were traveling to New York would say, "Oh! I just LOVE that city!!!"  It was curious to me, because at that point, all I could see was a place that didn't have room for my family and was so expensive I didn't know what to do.

Each trip, however, New York wins a piece of my heart. I see God's grace hiding behind corners and surprising me at just the right moments.

But the most interesting part about it is that it is not the city itself that has won me, so much as its people.  We have met so many amazing, kind, generous people in New York, and it just reminds us that we are all connected. There is still love and beauty and kindness in this world and it is worth noticing, and it is worth fighting for.  From California, through 18 states, all the way to New York, I have been in awe of the capacity the human heart has to love others, to give sacrificially, and to feel compassion for hardship.

So, to everyone who has loved, given, supported, prayed, and thought of us on this journey with Elijah-thank you. You have been like a bridge over troubled water. You have pointed us to Jesus and reminded us that we aren't alone.

And New York.  I love your doctors, your hospitals, your Ronald McDonald house full of hope and bright colors and big smiles.  I love your cafes and your bakeries full of colorful pastries. I love Central Park, and how I discover something new every time I'm there. I love your creative genius including hair stylists and floral arrangements and amazing food.

But most of all, I am forever grateful for the way you have loved and taken in my beautiful baby boy as he needs treatments for his cancer.

I would never have chosen this road, but imagine my surprise to find myself at a beautiful table in New York with stunning beauty, intelligence and love. 

We are so humbled to have been invited in to a group of friends and family so loving and welcoming.  It is part of the bridge...the one that God is building under our very feet to carry us across the waters that we never intended to travel.

It is a beautiful picture of how love multiplies and grows and expands our heart. We are very grateful to have returned home safely to California and all our munchkins. Our homeschool co-op has begun and the kids were anxious to attend and see their friends.  There are dishes and laundry and many things that need our attention here at home.

But as for New York, we will see you again in 4 weeks!  And whether in CA or NY, or somewhere in between, I pray that we will notice beauty and love and bring light wherever our bridge takes us.

Next steps

Elijah has his exam under anesthesia early this morning. He had had a really rough night, up every couple of hours screaming, no matter how we tried to help him. We were able to calm him down eventually, but then the whole process would start over. I think it was a combination of being exhausted, and possibly some discomfort in his ears from flying. Oh! And teething.

Anyhow! His exam went very well. His 3 tumors are now gone. He does, however, have one new tumor that they treated with laser.  There is a "moderately high" chance that it will need to be treated again with laser when we come back in 4 weeks. 

But overall, this is good news. In regards to any new tumors developing, we are in good shape as to his vision-they will most likely not grow in his central field of vision.  So moving forward, it is continuing to treat any new tumors and stay on top of any *reoccurances* of his old tumors, which are in more dangerous locations.

Elijah is KONKED OUT. He's been asleep for a couple of hours now. He nursed after the exam, but between little sleep and the anesthesia, he is tuckered out.

Mommy and Daddy are too. :)

Go Gold

September is National Children's Cancer Awareness Month. So, today we are heading over for Elijah's exam to see what's happening with his cancer.

Childhood cancer is gnarly. We have been privileged to meet some amazing families walking some really difficult roads.  Our hearts are with those families in prayer.

And we are going gold for Elijah!