Wednesday, December 30, 2015


Despite the sometimes weariness I feel, we have had a wonderful month, full of lots of fun. I don't want to forget all the wonderful things to be thankful for:

The Women's Worship night at church with my girl.
My husband's work Christmas party.

Our own little Christmas party at home.
A dinner date with Noah.
Lunch with grandma including a trip to the library the day Caleb had his minor oral surgery.
This darling little Santa girl.
Tickets given to us to see the Nutcracker Ballet, which revolutionized Evelyn's life. Now so much is about being a ballerina.
The Paseo Nuevo mall all lit up and decorated:
Children's Hospital and a lunch date with these two gentlemen.
Star Wars, Episode 7.
A super fun Christmas party!
Time with the cousins!
A local church offers a meal in the park for those who are homeless, or just don't have anywhere to go that day.  We had gone on Thanksgiving, but they had so many helpers, they didn't need much help. (Which is great!). So for Christmas, we decided to go early and help set up. We also purchased bookmarks and candy canes for the kids to pass out. It was so sweet! But this picture is one of my favorite memories of that day. Ben had talked with a few men and prayed with them, and was just about to pray with this gentlemen who was going through a rough season in His life. Just then, our 4 year old boy comes bouncing up with a candy cane to say "Merry Christmas!"  The man held out his hand to Judah and they all prayed together.

It was a full month, and we have much to be thankful for!!!!

Tuesday, December 29, 2015

"I thought...." (Lessons from Narnia)

"....Please, Aslan! Am I not to know?"
"To know what would have happened, child?" said Aslan. "No. Nobody is ever told that."
"Oh dear," said Lucy.
"But anyone can find out what will happen," said Aslan. "If you go back to the others now, and wake them up; and tell them you have seen me again; and that you must all get up at once and follow me--what will happen? There is only one way of finding out."
"Do you mean that is what you want me to do?" gasped Lucy.
"Yes, little one," said Aslan....
"But they won't believe me!" said Lucy.
"It doesn't matter," said Aslan.
"Oh dear, oh dear," said Lucy. "And I was so pleased at finding you again. And I thought you'd let me stay. And I thought you'd come roaring in and frighten the enemies away--like last time. And now everything is going to be horrid."
"It is hard for you, little one," said Aslan.  "But things never happen the same way twice.  It has been hard for us all in Narnia before now."

--C.S. Lewis, Prince Caspian
As Ben read this portion the other night, I felt just like Lucy. My mind rumbled and tumbled with all the things "I thought."
"I thought you'd come roaring in and frighten the enemies away..."

I feel like I have come to terms with Elijah having cancer. I have accepted that it will be a long road of appointments and check ups....and the fact that cancer will always be in the back of our minds for him.

Retinoblastoma is based on a two-hit theory.  All the kids who have it have a "tumor suppressor gene" missing in their eyes, and then also had a *second hit* somehow, which led to them developing the tumor (s) in one eye, or both. About a third to a half of the kids are missing this tumor suppressing gene all throughout their body. That's Elijah. He basically has one hit everywhere. Two hits to the eye. And the rest is yet to be *seen*. (Funny, not funny).  He will see an oncologist for the rest of his life.  He will be under anesthesia every 6 weeks until he is at least 3 years old.  These are the facts, we just take them as they come and file them away as we take each day for what it brings.

The stuff that really messes with me, is the *normal* stuff on top of that. 
It's the letter from insurance saying that coverage for his chemo back in July was denied and if they can't appeal it, we will be personally responsible for $30,000. (That one doesn't mess with me too much because let's face it: I don't have $30,000 anyway, so it's not worth stressing about, and Elijah is worth every penny and more.)
It's the stress of traveling and anesthesia and being booked again with *my favorite* airline, with less-than-desirable travel times (we will return to LAX at around 9pm with a two hour drive the night before our homeschool co-op).

But this beautiful passage from Prince Caspian put me right in the shoes of Lucy: 
"I thought......"
I thought it might be different. 
I thought maybe I would be flying with the airline I like at the times that were a little more convenient.
I thought maybe I would be able to take Emma with me this time.
I thought maybe he wouldn't have the genetic mutation and our road with cancer would be shorter.
I thought I would be stronger and not get worn out so quickly.
I thought getting dressed wouldn't seem like an insurmountable challenge some days.
I thought potty training my sixth child would be *a little* easier. 
And on and on with the things "I thought."

But Aslan, representative of my Good Shepherd, isn't afraid for things to be very hard for me (sometimes much to my chagrin).  He knows that things have been hard many, many times before in the lives of His sheep.  He has not given a guarantee that He will rush in roaring and frightening all my enemies away.

But the next scene in the book is what He has promised:

"Lucy buried her head in his mane to hide from his face.  But there must have been magic in his mane. She could feel lion-strength going into her...."

I don't always feel the lion-strength going into me. But I'm going to bury my face in His mane until I do.

A wise friend told me that in the difficult moments of life, you just do the next thing.  Whether it is getting dressed, making breakfast, going on a walk to get some fresh air, or getting on a plane.

So. I'm just doing the next thing. I'm going to bury my head in Christ until it's time to get on the plane again.  (And hopefully in between that time I can get dressed and make a few meals!).
(Maybe a few walks here and there? This is on the bike path with my big ones)

But the beauty of this sweet passage is that it reminded me how frequently it hurts when things don't go as we thought.  Our God is not afraid for things to be very, very hard for us, because He can see the beauty that comes from them.  But it also doesn't bother Him a bit if we just need to hide our face in His mane until the lion-strength comes for the next thing. 

Friday, December 25, 2015

A Letter to the King

My Great King,

     You know that this year has been different for us. In many ways, much harder. And I know you have seen the last month.  You have seen how rather than doing many of our normal things-really beautiful, wonderful things that cause our hearts to slow down and really focus on You....well, instead we have had lots of appointments with the oncologist, the pediatrician, the endodontist, the periodontist, and even the emergency room.

You know the things You have been teaching my mostly selfish heart about gifts....about how we don't get to choose them, just receive them. Sometimes what you give isn't what I want.
You see me....crying in the midst of a flight just praying that I can calm Elijah down, or that my back won't feel like it will give out any second, or that Elijah wouldn't be up all night crying before a day full of travel. You see me wish for help in those moments...and you see the hurt when I feel like you're not there.
And then you give something else. Something unexpected. And I have to learn that I don't get to choose the gifts, but I do get to choose to see them. I do get to be thankful.

You give new friends in a big city, or kind people to answer my call to the insurance company.  You give Christmas parties and gifts for my children.

Sometimes I feel like the Little Drummer Boy, longing to give you everything but feeling like I have nothing worthy to give.  You saw that too. And that's why you spent this month reminding me:


It is WHO you are.

You are the pursuer, and your love never stops looking for me. I can NEVER, ever out-give you.

So tonight, as I felt the weight in my heart because we couldn't make it to church with little ones just getting over sickness...
I thought about how I was depriving my kids of one of our favorite traditions where we stop and gaze upon Your goodness...

And I found myself in awe of You anyway.  You moved the hearts of my children to write a play, a poem, a drama.  They reenacted the beautiful story of the Christ child's birth, they displayed the true meaning of Christmas, they even sang songs of worship and adoration.  It was their gift to me.

It was YOUR gift to me.
You are the giver.
I can't out-give you.

So tonight, as we close our eyes and prepare to awake with the early hours and the overflowing excitement of many little people...

I bow my head before you, my King.  The gifts are fun and exciting and even sometimes...magical.  But they are just means to the great end...the Giver.  Thank you for the gifts--even the ones I didn't want, and the ones I didn't get.  Thank you for being a King who knows the hearts of His people.  Thank you for being worthy of worship, adoration and service.

This Christmas, you have reminded me how much I need a Savior.  You have reminded me that even on my very best day....I need someone to see me, to know me, and to love me.  I'm Mary, and there's no room for me....and yet as the Giver you come and tell me that Christ will make His home in me. Jesus said He would go and prepare a place for me.  I am so underserving of all of this....but I want it, I need it desperately.  I need beauty and hope and joy in a world that can only offer brokenness and finality. I need to be reminded that there is more to this life than what I can see.
I need to be reminded that even in the midst of sadness, or sorrow, or longing for a world where things are "right"... You are there. You see me.  You still have plans for me--and they are still plans to prosper me and not to harm me, plans for my hope and my future.  I need You. I need a King that has a True and Lasting Kingdom. I need You, the One who was, and is, and is to come.  I need You to keep coming, to keep chasing, to keep being Emmanuel, God with us. 

Thank you for reminding me that You are the Giver.  Thank you for sending Jesus, Emmanuel, to be with us. Thank you that in the midst of this crazy life, you're still giving.  Thank you for staggering me tonight with Your work in the hearts of my children. It could only come from You.

It is my honor to serve you, and to love you. 

Your daughter,

Friday, December 18, 2015

The Cool Mom....

For those of you who know me, you know that it's not often I get to be the "cool" mom.  Loving, educational, and maybe even fun. But not usually "cool" by most standards.

Thanks to my mom, the construction crew near her house (a whole story on that one!), and the movie theater for offering a show at 10am....

I got to take the big 3 to see Star Wars Episode 7!!!!!

We don't get to go to the theater often (think, ever!). So this was a huge treat and SO fun!!!!!!!  

Wednesday, December 16, 2015

Heading to LA....

Today, every inch of my body aches. I decided last week that I might take up running. For those of you who know me, this is shocking because it violates a long-standing objection I have with running: too much jiggles.

Unfortunately, the jiggling is still an issue. But I thought about how I walk and walk the streets of NY when I'm there and had wondered how much ground I could cover if I actually ran.  I thought practicing here in CA would help me to know if this is something I might enjoy.  I bundled myself up and put Evelyn in the Chariot stroller and hit the path. The walking warm-up was great. It didn't seem quite so cold. I had headphones in with some amazing and inspiring music....but the headphones kept yanking and pulling and falling out so I abandoned that.

As I turned the corner onto the bike path, I thought, "Here we go. Just me and the path."  I would love to report that I felt light and that the energy flowing through me created some amazing runner's high. But that would be lying folks.

Every step felt like pulling lead out of mud.  I noticed a few minutes in, as I constantly reminded myself to breath "in through the nose and out through the mouth," that my nose had become numb from the cold.  It was hard to breathe, but if I stopped breathing through the nose, the shooting pain would begin in my side.

My heaving chest wanted to stop only minutes in.  The frost took over my hands so that they were both numb and yet so full of pain that I couldn't move them. All in all...I covered a mile and a half. Not much by any runner's standard. And I didn't even run all of that.

And I would love to report that I feel amazing now, proud of the accomplishment and looking forward to the next time.  But that's not true either. I'm not sure I'll keep running. Everything hurts and I'm just not good at it. But I will keep moving. 

Today, I am taking Elijah down to CHLA to do blood work and meet with his oncologist.  Ever since I returned from New York, it's felt like my run. Life feels a little like pulling lead from the mud. This life can sometimes feel like the biting cold, or the heaving of your chest, or the pain in your side.  

Perfect timing to read this yesterday:

"Some seasons are Naomi times.  You ventured out with those hopes, full--and you feel you've been brought back empty--disillusioned, withered dry.
In some seasons, for all their gloss and glitz, it can be hard to find gifts, and days can feel like fists....
The radicals and the reflective, the Ruths and the revolutionaries--they are the ones on the road, in the fields, on the wall, pointing to the dawn of the new Kingdom coming, pointing to the light that breaks through all things broken, pointing to redemption always rising and the Advent coming again.  Brilliant people don't deny the dark; they are the ones who never stop looking for His light in everything."-- Ann Voskamp

So today, I'm hitting the road. I'm not denying the dark.  But I'm looking for His light in everything.  I'm putting one foot in front of the other and I'm going to keep moving.

Tuesday, December 08, 2015

Never a Dull Moment....

Well. We had a really fun Christmas party on Sunday night-just our family!! We tried to have a gingerbread house competition, which didn't work out....then we tried to decorate the Christmas tree, which took 3 trips to Rite-Aid because of some newly purchased lights that didn't work....

But sometimes, things just don't go as planned. Sometimes it feels like everything is going wrong and you're exhausted and you just want something to go "right".  But. You just keep going.

So. We ate our "Christmas pasta"
We drank apple cider. We ate Ginger Cookies and Peppermint Bark:
And then we delivered some goodies to a couple of neighbors....with a little chorus of "We Wish You a Merry Christmas."

All in all, it was still fun, even if it didn't go as planned.

Monday was just supposed to be a sort of lazy, kind of catching-up day....
My sweet boy sort of hobbled in, crying, laying on the floor in front of our door.

We have a very fun climbing tree, which he fell out of from a pretty high height.  
(Emma is up in the tree about where Ezra fell from. Ezra is showing us where he fell).

Nothing was obviously broken....but after four hours of laying on the couch (which is extremely out of character for this young man), we made a call to the pediatrician. They thought the ER would be best, especially to rule out concussion.

They were so kind and really great with Ezra at the Ojai Hospital ER. Because he had a temperature with no other explainable cause, we went ahead and did a CT scan, which came out clear.

All in all, he is okay and we are so thankful.  We will lay low and keep an eye on him over the next few days. Just like we always do. ;-)

Friday, December 04, 2015

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 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!!!

Tuesday, December 01, 2015

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!!! 
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.