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.