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!

We made it!

We got checked in just in time to grab some food and some supplies for the days ahead (water!!!!). And now, we are exhausted and ready to crash. I will wake Elijah to eat for the last time at 2:20am, and then we will all be up at 5:45am to get ready to head to the hospital.

Good night, New York.

Oh! The Places You'll Go

On the drive down to LAX this morning, Ben and I passed the time in the wee hours by thinking about some of the great hospitals we have been privileged to receive care in.

We remembered Noah needed a minor surgery just before we had Ezra, and our insurance allowed me to choose the best possible care. We ended up at Cedar Sinai Hospital in LA.

Later, when I was diagnosed with Trigeminal Neuralgia, we ended up at Cottage Hospital, and eventually with a great neurologist in Santa Barbara.

I remember hearing about friends who made that seemingly long drive to Children's Hospital Los Angeles....the drive that now seems so familiar.  We never planned to visit so many different departments and to become so familiar with that hospital, but we are so thankful for the doctors and nurses that have cared for us there.

And now, Memorial Sloan Kettering Cancer Center, as well as New York Presbyterian Weil/Cornell. Both hospitals, the doctors, the nurses, all the staff--we feel so thankful for the excellent care that Elijah receives. And even though our insurance company has not always been the *easiest* or most *expedient* to work with, we are so very grateful that our coverage allows us to be cared for by these amazing doctors. 

So here we go again. Ben, Elijah and I are on our way to NY again.  It may not be where I would have chosen to go, or why I would have wanted to go somewhere.  But I'm thankful for the opportunity to get the best possible care for Elijah. And this is where our adventure is taking us.

First things....and that awkward question.

This year has been a different year for us.  It feels like a spin cycle that never really gets us all the way dry. ;-p

But sometimes, it takes a year like that to make you go back to the first things, and to remember what is really important.

I'll be honest. I've done my best to plan and prepare for this year's schooling...but let's just be real and honest for a minute: I don't care.

Not that I don't care about my kids...oh no! I care about them, perhaps even more so. And not that I don't care about their education or their hearts or their character....I care about those things deeply.

But in the midst of appointments and cancer and never knowing what life will look like in 4 weeks or even one week...

I lose my ability to care about math curriculum and checking off the boxes and keeping attendance (when, let's face it, everyone is always here, so do I really need to mark them "present"?)

I am often asked that awkward question, "Why do you homeschool?"

But this year, that question REALLY matters.  It has been good and necessary for me to go back and ask myself....why do we homeschool?

And with it, I go back over the many verses God has given me over the years. I go back over the many times I've tried to answer that question by condensing years of quiet times into a cohesive two sentence answer.

And I try to answer that question honestly in a way that communicates that I will never live or die on the hill of homeschooling. I will not ever tell you that you are supposed to be homeschooling your child because that would be presumptive and in His kindness, God has given me enough on my plate so that I don't have time to worry about yours. :)

But reminding myself why we homeschool is crucial for our year this year.  

It will remind me not to measure my "success" based on my children's performance...but on our obedience to God's call on our family.

It will remind me that worshipping the One True God is always more important than bowing to the idols of test scores, good grades, and the knowledge and wisdom of this world.

It will remind me that while physical training (including the mind) has much value, spiritual training has much more value-for both this life and the life to come.

It will remind me that what God may have in mind for us to learn today, this month, or this year, may not come from a textbook.

It will remind me that our reasons for homeschooling had very little to do with education and everything to do with discipleship.  I remember being awestruck, by the sacrifice Christ made in making disciples of 12 ragamuffin men. By hearing the call to make disciples myself, and thinking....the amount of time that requires is unreal!!

Thinking about why we homeschool, and all the reasons over the years takes me back to the very first call that God gave me in regards to these children...a call that remains, although sometimes looks different through these different seasons. 

The call to be WITH them.

I can order the right curriculum, but fail to be present. 

I can read the Bible, or play worship music-I could drive them to every available opportunity that presents itself. But if I have not chosen to enter into their world, to see things from their perspective, to feel what they are feeling...

And then call them to something Supernatural, something Greater than themselves...

Then I have not been faithful to my calling.

It is a lofty, and sometimes daunting calling. Being with them can be hard because it is loud and chaos can take over quickly. But it is one that is so necessary this year.  If we are to prepare these beautiful children for a life that is so much harder than I ever thought it would be....we can only do so by following the example of our Good Shepherd, our Emmanuel...our God With Us.  He entered in, he sympathizes with our every weakness, and empowers us to live in a way that is contrary to culture.

And so, even though our season calls me out of this home and back and forth to the other side of the country in order to take care of Elijah, it just means that I must count on God to show me how to be *with them.*  To go back to the first things:  to know nothing but Christ and Him crucified...in whom are hidden all the treasures of wisdom and knowledge.  To trust that He is the best teacher, and He will use my tiny loaves and fish, and multiply them. To trust that His purposes for these children are sure, and that He will accomplish them.

And maybe this year, we won't see "progress" in the way of workbooks or curriculum.  But, my children are learning that pain and sorrow do not mean that God is absent-they mean that God is NECESSARY.  Last night, we talked about Joseph, and his story of betrayal, false accusations, prison.... And how, if he had given up in the middle, so many lives would have been lost-both in Egypt and throughout the known world at that time.  We talked about those we have met who have already lost their child to cancer.  There is so much pain and sadness and sorrow in this life, but there is also life and hope and beauty.

So this year, I pray that we would discover more of the beauty and wisdom and knowledge that is found only in Jesus Christ. I pray that He would build our character and strengthen our resolve to be ones who would bring as much beauty and joy as is possible into the days we are given.  And I pray that we would seek first His Kingdom and His righteousness, trusting that all the other things will be added. (And subtracted, and multiplied....well, you get the point.)

This year is about going back to the first things.  And while I still don't have an eloquently succinct answer to the awkward question....in a world where tomorrow is never a guarantee, I think I'll start with, "It is my honor to be with them."

First Day?

This is one of the more difficult things about homeschooling. We don't always have a beginning or an ending to the year... I'd like to think that is because we are always learning and growing, but it is not always in ways that are measureable.

Also, the grade thing. It's silly, because at church we just put them in the grade they would be if they were in school. Except for my two October boys who would be held back due to the late birthdays.  But anyhow.  For me to say, Emma is in 7th grade and Caleb is in 6th grade would be true, but also wouldn't totally do justice to the work they are doing. So, I don't know what grade they are technically in, but they are working hard and I'm very proud of them. 

Elijah is doing great in his supervisory role; we also could call him the "joy distraction", because merely the sight of a smile on his face brings joy to the room and at least 15 minutes of distraction.  My favorite kind of distraction.😉

Evelyn will be learning her letters-we just use the flash cards from My Father's World Kindergarten, because it's just too precious for kids to know that the sun reminds us that "Jesus is the light of the world."  Oh, and that the "S" says "sssss".

Judah is still working on Sing, Spell...but he is well on his way through the "first grade" portion and can read small books with simple words. He is also working through Saxon Math 1....but he has been for over a year. Maybe he will make more progress when we remember to do his math....but for now he seems to be doing fine. When I tell Ezra to go jump 100 times on the trampoline, Judah will yell to him, "Ezra, you can also just count to 10 ten times!!!"

Ezra is doing great. He can read just about anything....When he finished up his work before the summer, he was working at about a 3rd grade level across the board. So my challenge right now is finding appropriate things that work for him and how his mind works, but don't overwhelm his little six year old body and require too much writing (his hand gets tired!) or sitting still.  Ezra and Noah are starting back through our history cycle, so we get to study Ancient Egypt again and read aloud some of our family favorites like God King, The Golden Goblet, and Shadow Hawk, as well as some beautiful picture books. We also get to go back to a few of my favorite resources: The Greenleaf Guide to the Old Testament, and Victor's Journey Through the Bible.

Noah has really grown this year. I've been so impressed by him. He completed Rod and Staff 4th grade English last year. This year, I'm using Character Quality Language Arts with both him and Ezra.  Noah also completed Teaching Textbooks 5 last year, and I'm trying to figure out where to go next for him. But he is loving Kahn Academy in the meantime.

Emma and Caleb have a somewhat rigorous year, but I am trying to pace it in such a way that they are challenged but not overwhelmed.  Right now they are reading Chosen by God, and have finished Genesis, and soon we will move on to the Iliad. I purpose to take them through IEW's The Elegant Essay.  Emma is doing Algebra through Teaching Textbooks, and after Saxon 1/2, it has been a true blessing. (I was able to borrow it from a friend-it's so pricey!)

I still haven't quite figured out Caleb-he is starting Algebra 2/Trig.

Still using Visual Latin (Caleb is almost done with year 2), and Rosetta Stone for Spanish.  Both kids loved Lightbearers, which is the curriculum we used last year. A challenge at their stage of the game is that I cannot necessarily keep up with everything they are reading....and much of what they are studying, I have never read.  But, we are using a combination of Veritas Press Omnibus, and Roman Roads Media Old Western Culture. I love the writing the kids are producing, as well as our late night conversations about artwork and culture and God's Word. It's like a dream come true. These two challenge me and I love talking about deep things with them.  I'll leave you with a recent topic of conversation:

This is a picture of Michelangelo's Creation of Man. There is a woman under the arm of the portrayal of God. Eve is painted elsewhere on this ceiling so it is not likely to be her. Who do you think the woman is????

Elli the Elephant!

All the way from Germany! 

Elli the Elephant has a "special" eye just like Elijah. Thank you so much to 

http://www.kinderaugenkrebsstiftung.de/blog/elli/

This amazing organization based in Germany is connecting Retinoblastoma kids all over the world through this sweet elephant with a removable eye.

Broken

I woke up early Friday morning to the feeling of pain flooding my lower back.  I am fairly accustomed to this pain, having had back trouble for the last 6 years or so. The original injury came 9 years ago, when I slipped on the ice of the mountains while pregnant and carrying a toddler. The bulged disc in my back will surprise me at times by claiming the use of my body at random intervals.

The last few times haven't been quite so bad. I can usually get by with ice, a few chiropractor visits, sometimes some deep tissue massage, and a couple of down days.

This time it is worse. My dear teenager drove me down to the chiropractor and my mom stayed with the kids. Unfortunately, they couldn't do too much in the way of adjustment because of how tight things are and the level of pain I'm experiencing.

The timing is....difficult. Although, I'm not sure there is ever a great time for a mom of seven kids to have her back go out.

 ;-).

In two weeks, I'm supposed to be flying to NY with Elijah. After the long drive out and difficulty in figuring out the details....our plan moving forward was for Ben to be with the kids here while I took Elijah to NY. We know that my back is an issue, but since it had been doing okay, we thought perhaps I would be strong enough to make the trip on my own.  Honestly, I don't know what to make of all the details of the upcoming trip.  It will work out one way or another. 

But it got me thinking....

Loss, in general, is like what's happening with my back.  Whether it's the loss of a child, a spouse, a marriage, a way of life, a home, a country, an eye, or just the way you thought it was going to go....it leaves us broken.

There's a dull and constant ache that never goes away. And on top of that, there are those moments where the pain rears up and shoots through you with electrifying power, making you wonder if you can withstand it.

There are a multitude of solutions this world would offer in attempts to dull our ability to feel the brokenness. But they can never heal.  Only Jesus can do that.

The pain has a purpose, though. That dull aching is meant to serve as a reminder that something isn't right (and to tell you when you need to slow down!). And the jolts of pain that come when you move in certain ways remind you that you can't slap on a smile and pretend to be un-broken.

And while it is human to have discouragement, and depression tempt you and beckon to you in your broken state....they are not the final word.

The HOPE of the follower of Christ is that He has paved the pathway to healing. He made it possible through His death on the cross and His resurrection from the dead. But He didn't forge this pathway by avoiding pain; He willingly subjected Himself to loss and brokenness...because it was the only way to purchase our healing.

I'm like a scared little sheep, flailing on my back wondering when the pain will end. And I don't have an answer. But I know this. My Shepherd is not one to leave a sheep behind. 

I asked Him this morning, "What USE (VALUE) is a momma with seven kids who can't even get up???"

Instantly, I saw the beautiful wild flowers swaying in the wind, offering up sweet praise and worship to the Lord.  And the gentle rebuke to my question became clear: we humans measure everything in usefulness and productivity. But praise be to God!!! I was made to worship Him!!! And although it is not, perhaps, the platform of my choosing....I can worship Him just as sweetly from the couch.  My brokenness spills out as an offering and things happen in the heavenly realm.

Our brokenness is really a declaration of His wholeness, His goodness, His ability to do what I cannot.  So today, I'm "broken." But my eyes can see the day when brokenness is swallowed up in healing. 

Come. Lord. Jesus. 

5 "But he was pierced for our rebellion,
    crushed for our sins.
He was beaten so we could be whole.
    He was whipped so we could be healed.
6 All of us, like sheep, have strayed away.
    We have left God’s paths to follow our own.
Yet the Lord laid on him
    the sins of us all." Isaiah 53:5-6

Sunrise in Texas

There's just something so beautiful and breathtaking about a sunrise.  I think it's because after the dark of night, it carries with it the hope of something new.  It's my favorite time of day.

We stayed last night in Amarillo, Texas. The hotel was so nice, I wanted to stay. But home is getting so close we can almost taste it.  Early this morning, while everyone slept, I snuck out to the Wal-Mart nearby which is open 24 hours.

I loaded up on snacks for the day.  As I got everything loaded in the car to head back to the hotel, I got to see the beauty of the sunrise.

As I took the first driving shift this morning, Ben read aloud from my book, A Shepherd Looks at Psalm 23.  We read the well-known words:

"Surely goodness and mercy shall follow me..."

This part of the Psalm is a bold declaration of the trust the Psalmist has in his Good Shepherd: no matter what happens in this life....His goodness and His mercy shall follow me.

It's so much easier to believe, to trust, to remember this when things are going well. When things are hard...well, that's when it is tempting to forget that His goodness and mercy WILL follow after me all the days of my life.

Maybe that's why I love the sunrise so much. It is His goodness and mercy to remind me that even in the darkness of night, His is there. And at just the right time, He will show Himself in His brilliance, and darkness will be swallowed up by the light.

And just because I know everyone loves seeing the little man....

I didn't mean to cut him off like that...I was just taking the picture from an awkward turning around and guessing type of angle. :-)

Lady Liberty (from a few days ago)

I'm not gonna lie folks...I couldn't help but sing the national anthem ever so quietly to my kids as we saw this from the Staten Island Ferry....

#nofilter #ladyliberty #nycadventures 

Books are friends....

Books, and stories in general hold such a special place in the life of our family.  So many amazing stories have come to life in our home.

So it wouldn't be a Hester family road trip without a book. And the Lord has such perfect timing.

Our current read-aloud is called Seal of God. It is engaging, readable, relatable, and inspiring.  (Caveat: it is about a young, wayward man who desires to become a Navy Seal for revenge...but finds a Savior instead.  There are some stories of serious misbehaving....which my kids found HILARIOUS.  But others may not find so appropriate for their children).

Anyhow! Imagine the perfect timing of this story, as the author describes the grueling exercises involved in Seal Training. Imagine, our ability to relate as he describes "Hell week", including "surf tortures" and the "Grinder."

This week....definitely felt like a grinder. Ben and I had some good laughs as we read about the author consistently being pushed far beyond what he mentally, physically, and emotionally thought possible.

But it also carried a lot of profound lessons for us.  There is no easy way to train for the hard things.  (If there were, I'm sure we would choose the easy way every time.). You can only really train for the hard things...by going through hard things.  There is a strength, a resolve, and definitely a surrender.  I don't like it when people say "God won't give you more than you can handle."  For two main reasons: first, because that's not what the Bible actually says.(It does say that He will not allow us to be tempted beyond what we can bear, and that He will always give us a way of escape from what we are being tempted with). And second, because my experience is that God ALWAYS gives us more than we can handle.  That's kind of the point. His power is made perfect in our weakness.

And while we aren't going through Navy SEAL training...we could definitely relate, and have been so encouraged to keep going by this book.

And personally, I have been re-reading a sweet one: A Shepherd Looks at Psalm 23.  This book as well has been so valuable and relatable.  I have been so enriched by the beautiful pictures of the Good Shepherd...when he takes his sheep to a new place (even the valley of the shadow of death), He makes several trips beforehand to survey the land where He will bring His sheep.  What a comforting thought to know that even when I don't like where I find myself, I can know that He has been here before me, preparing the land and me before I ever get there.

I'll leave you with a timely quote from this book (speaking of sheep in a storm, and how the Shepherd must remain with them-that when cold threatens to take over He may give them a drink of wine to warm their bodies):

"What a picture of my Master, sharing the wine, the very life blood of His own suffering from His overflowing cup, poured out at Calvary for me. He is there with me in every storm. My Shepherd is alert to every approaching disaster that threatens His people. He has been through the storms of sufferings before. He bore our sorrows and was acquainted with our grief. 

     And now no matter what storms I face, His very life and strength and vitality is poured into mine."--Phillip Keller

Take a deep breath....

Sometimes I underestimate the power of sleep. Each day has been pushing it to the limits of the night, and then getting up early to push on ahead.

Our kids LOVE a restaurant we discovered on the first trip out: Breakfast at Tiffany's in Sharpsville, Pennsylvania. Not only is the staff so kind and welcoming, but the food is amazing!!! So, we rerouted our trip just a little so we could visit.

We decided to stay nearby in Pennsylvania and ended up with th coolest set-up! We have adjoining rooms and the biggest bath tub I've ever seen. We got here after normal bedtime...so the kids went swimming, then we watched a little Food Network, and then we did some reading. (We have an amazing read-aloud right now, which I'll share more about later). We didn't get into bed until midnight!! I was dreading  getting up and getting on the road. I was sooooo tired. We had called to see about getting our stay extended, but the room was booked.

Ben took the big kids down for the hot breakfast at the hotel, and I stayed and gave Ev another bath and played with Elijah.  He checked one last time and found that they would let us stay another night!! Yay!!!!!!

We were able to relax a little, do some laundry, and go swimming. Ben and I even got in a workout. It was much needed down time. I wish it could last a little longer, but we do need to get home. :)

We are so thankful for a night to just take a deep breath before getting back on the road.

Pennsylvania is beautiful!

The huge tub!

A good workout.

Swim buddies!

The chocolate chip pancake so big, you cut it with a pizza cutter....caramel apple crisp French toast....maple glazed and bacon French toast....

Delicious!!!!

Into the darkness...

Usually, when things are difficult for me, you can tell because I'm quiet. In the hard moments of labor, you can often find me closed off in my own little world trying to manage the pain. Similarly, when I'm overwhelmed, or hurting emotionally...I'm just usually....quiet.

I know everyone who is praying appreciates the updates, so I am trying to still do that. But I figure if I'm going to be telling our story for many to read...I need to do it honestly, and kindly.

This week was one of the hardest yet. It was the details, I think....Things not working out, trouble communicating and coordinating care and arrangements, melt downs, late nights...the list goes on and on.  And the details aren't really important in sharing because 1. I don't want to speak ill of anyone involved in Elijah's care because overall, he has the absolute best. Especially when it comes to his doctors and nurses.

2. As I fought through my frustration in all the details...you can't help but come to the conclusion that you are really frustrated because things aren't working out.  It isn't going how you want it to.

It's sort of like entering into the dark tunnels of the Subway for the first time. You don't know what's down there. And some of it is down right scary. It's unknown. You're worried that you might not come out with everyone you went in with. You're not even sure if you're on the right train and heading in the right direction. And even once you're on the train safely, you have to wonder if you've missed your stop, or maybe you made a mistake and got on the entirely wrong train all together.  

So, if I'm honest...I can't help but feel like somehow I made a mistake and got on the wrong train.  It seems so dimly lit that I can't tell which direction I'm heading. There is fear in making sure all *my* people are safe and together, and that we all get off at the same exit.  I'm tired of the bumps and the turns and the stops that make your head and your stomach lurch.  I'm weary.  I want off this crazy cancer ride.

And while I am rejoicing in the good news for Elijah...I have to be honest that it's not entirely all the way good. Although the tumors responded well to the chemo treatment...his vision is at risk no matter what treatment course we take. And although we are headed in a much better direction in regards to tumors and their growth... There is still cancer inside him.

And I know that God is with us and He loves us. I know that He gets to decide what Elijah gets to see and not see. I know that sometimes God allows hard things because those are the things that truly develop character.

But it doesn't mean it isn't hard. 

21Yet this I call to mind

and therefore I have hope:

22Because of the Lord’s great love we are not consumed,

for his compassions never fail.

23They are new every morning;

great is your faithfulness.

Lamentations 3:21-23

So it turns out that sometimes you just have to go down into the darkness.  Sometimes, it even surprises you. Sometimes it is scary. But so much less scary when your daddy is with you.

Sometimes, you take all seven kids on the subway and meet a lovely older couple who teach Sunday School in Florida and are getting off at the same exit. Sometimes you emerge from the tunnel and find yourself ready for Central Park, walking to Belvedere Castle, having ice cream and lemonade just before it begins to sprinkle, and with kids in awe of a new experience and adventure.

Sometimes it's dark and you have to remind yourself at every stop that it's not your bravery that gives you endurance for the ride. It is because of the Lord's great love, and His compassions that never fail.

Unexpected turn of events...

Well. That's one of the difficult things about cancer. It's inpredictable. So far, it's unpredictability has not been in Elijah's favor....but today, it was.

We had planned for two more intra-arterial chemo treatments (well, that's what we were told to expect.)

We had loosely planned to stay in NY for 4-6 weeks, encompassing this treatment.  Today, we got some great news. Elijah responded very well to the chemo. 3 of his tumors are gone-just scars left.  The other 3 are just scars with some cancerous tissue remaining. So, he is not totally stable as far as all tumors under control, but he is in much better shape. I think normally they would have gone ahead with the intra-arterial chemo....but the challenge in Elijah's case is the location of his tumors. One is very close (1/10 of a mm) to his central field of vision and one is very close to the optic nerve.

Right now, Elijah's only options are laser treatments and IAC (the special chemo).  Both carry some risk to his vision....and since he only has one eye, we need to be cautious.

SO! No chemo this time. Dr. Abramson treated with laser today, and then we will determine what's next at the next exam in four weeks.  We may do more chemo then, depending on the possible growth of the tumors, or the development of new ones. Or! He may continue to respond well and we can manage things with laser.

Seeing as how we didn't have the treatment we thought, as well as subsequent follow-up as we do with the IAC.... We are going to head home.

I don't think any of us are ready to face the drive back to California just yet. But, Ben needed to come get me from the Ronald McDonald house. It was nice-the kids got to play in the playroom, have "science time", and we ate dinner at the house.  A lady came and taught how to make crafts out of pipe cleaners.  They really have something special going on at Ronald McDonald house NY.  It's amazing and I'm so thankful my kids got to experience some of it. We packed everything up and cleaned the room.

Tonight, we are staying at the Holiday Inn on Staten Island. (The same one we stayed at before.) Maybe just tonight...maybe another night. Just depends on when we recover enough to head home. Thank you to all who have prayed for us and thought of us.

In spite of the amazing good news for Elijah, all of the stress and unknowns and change of plans and so many other things (like driving and parking in NY) have taken a toll on us all. (Did you catch that? They've taken a "toll"? Hahahaha.)

Good night y'all.....

Update

Here is a quick summary:

We stayed in Flagstaff, AZ on Thursday night.

We stayed in Elk City, Oklahoma on Friday night.

We stayed in Vandalia, Illinois on Saturday night.

And finally, Sunday night we stayed in Johnstown, Pennsylvania.

We got into the city about 3pm this afternoon.

Unfortunately, they won't let us all stay at Ronald McDonald and we couldn't find anywhere else (at least no where remotely reasonable) in the city.

So. With sad goodbyes, Ben and the kids left Elijah and me at Ronald McDonald.  

An amazing couple offered to allow us to stay in their home a couple of hours outside the city.  Ben and the kids are headed there now.  Elijah and I will head to bed early tonight, seeing as how his last feeding is at 2:30am and then we are to be at the hospital by 6:30am.

Thank you again, to everyone who is praying with us.