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.

Monday, November 30, 2015


It's dark here in NY, but Elijah and I made it safe and sound.  The last trip was difficult in so many ways that I almost had to push myself to return. But of course, I knew I would get Elijah here, no matter what.
Well. Listen to this. Not only were the flight attendants SO kind to me, one of them in particular even held Elijah so I could go potty and was just particularly friendly with Elijah. She told me about this delicious soup at a Greek restaurant in the Chicago/Midway airport. I, however, only had 20 minutes until my next flight was boarding so I knew I wouldn't have time to get any food. I was really hungry! But I just figured we would forge ahead until getting to RMH.
Well. After a few minutes in my seat on the second flight, as other passengers were boarding, that flight attendant came and brought a cup of soup that she purchased to go, and found me on my second flight and brought it to me. I cried like a baby as I felt so overwhelmed by this generous kindness. And truly, I recognized it as the Lord's provision!

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

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

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

Sunday, November 29, 2015

'Twas the Night Before a Trip....

And all through the halls,
All the creatures were stirring,
Shaking ceilings and walls.

Mommy was packing 
And checking her list
To make sure nothing was left amiss.

The house looked as if a tornado had hit
With crumbs on the floor
And nowhere left to sit.

The kids were happily playing a game
Pretending to fly to NY on a plane

Southwest was their airline of choice, of course
For they had heard stories from a reliable source

Tears streamed quietly from momma's eyes
She hated the part where they all said goodbye 

But their sweet little baby needed specialty care
There's a reason they call her a "mama bear"

So whatever is needed, whatever the cost may be
We will get the baby to NY to be seen

And even though mommy can only be in one place
Her heart and her love multiply; it's a grace.

Early tomorrow we will catch our flight 
So to all: please keep praying! And have a great night!

Thursday, November 26, 2015


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

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

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

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

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

I'm so thankful that the last couple of months, I have been studying Psalm 27.  I love how David tells himself, demands of himself, really:
"Therefore I will offer sacrifices of joy in His tabernacle. I  will sing, yes, I will sing praises to the Lord."  Vs.6

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

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

So, while I will miss some of our reading as I head to NY next week, and traditions get ruffled by appointments and such...
I need a new perspective. I need to look at my situation differently. There are always things to be thankful for! And quite honestly....I think the trials of this year have made that list of things that I'm thankful for longer.  

I'm thankful for each little face that looks to me as mom.
I'm thankful for adventure and the experiences we have had as a family.
I'm thankful for deep discussions and the chance to walk with my kids through hard things.
I'm thankful for friends!
I'm thankful for excellent medical care and access to facilities that treat my son's rare cancer.
I'm thankful that my husband had the chance and was willing to work Thanksgiving day because he knew we needed it.
I'm thankful for my boy, who is out on the couch reading The Lord of the Rings to his younger brothers....and that they were all so excited to get up this morning and resume reading.
I'm so thankful for my girls, and our trips to Starbucks, our experiments with hair and our laughing for days.

I'm thankful for our homeschool co-op, our church, and all the places where we get to see ordinary people living extraordinary lives.
I'm thankful for the people on both sides of this country that have staggered me with their kindness and care.
I'm thankful for the smiles on faces when we have a good dinner.
I'm thankful for Team Pumpkin
And Team Pecan)
I'm thankful every time we light a candle, declaring that Jesus is the light of the world....and reminding me that the small things really do matter.
I'm thankful for grandmas who love big-with both arms and a heart overflowing.
I'm thankful for prayers that come from tiny people with huge hearts-I'm always undone when I hear my children pray.
I'm thankful for the many who have joined our family through prayer, support, and concern for us.
(I am realizing that this list here could go on and on and on....because truly there is so much to be thankful for!!!)

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

"The Lord your God is in your midst, the Mighty One, will save; He will rejoice over you with gladness, He will quiet you with His love, He will rejoice over you with singing."
Zephaniah 3:17

Today, I will sing praises to the God who is IN. MY. MIDST. 
I can't always see Him or feel Him. But He is there, rejoicing over ME! 
For my family....and for all that I love, my Thanksgiving day prayer is that I would   remain so close to His heart, that His song, the one He is singing over me, would become my own. That my thankful heart would sing out and invite others into the presence of the God who is in our midst.

Friday, November 06, 2015

To the woman in 22B

Dear Woman sitting in seat 22B,
     I'm so sorry we weren't properly introduced. I wish you could meet me under different circumstances, rather than on a flight from Dallas to Los Angeles.  You might have even liked me if we had met in a restaurant or on the subway. What you see is a young woman with a fussy baby sitting near you.  (ha! If you only knew. Not only do I look younger than I am, and have more kids than normal, but there aren't words for how this year has aged me.) 
     You clearly show your utter annoyance and displeasure with me by huffing, puffing, and sighing every time my baby cries out. Which, I'll admit, is more frequently than even I would like.
I'm standing up in the middle of a plane, perched in front of the only space possible which is the restroom in the middle of the plane. I squeezed myself up against the seat opposite you every time someone tried to get to the restroom because I can already tell that you loathe sharing space with me.
     I stood, swaying with my baby, trying to soothe him.  I prayed silently....asking God for help and wisdom, because quite honestly, it had already been a LONG day.  I had been up at 4am feeding the baby, and then got up at 5am for the day. I hid in the bathroom so I could pray and read my Bible and not disturb the baby after getting him back to sleep.  I cleaned our room at the Ronald McDonald house so we could check out. I had already done the flight from NY to Dallas and I was worn out.
     I decided to thank you for sharing your space with us, albeit begrudgingly. You interrupted me....and I mentioned that you seemed disturbed since you repeatedly sighed with displeasure.  When I explained that my baby boy has cancer and was flying for his treatment, you said words that shocked me. 
     "I didn't sign up for this," you said, referring, I suppose, to a flight with a fussy baby and a momma rocking him back and forth.
      Well.  Neither did I. I never signed up for spending my postpartum weeks deciding whether to remove my son's eye or to flood his body with poisonous chemotherapy.  I did not request to forego counting milestones like clapping and crawling, in order to count tumors or make treatment decisions.  And I can assure you, every single part of my being would rather be at home making dinner for my family than on a plane with my baby so sad and uncomfortable.
     Even though I didn't "sign up" for was sifted, through the hand of the Creator, for me.  
     Our meeting is really an instrument of grace.  It's hard to see that, and even believe that at times.  That's what faith is: believing that God exists, and that He rewards those who earnestly seek Him. Even when evidence suggests the contrary.
    Our meeting reminds me that there is always more going on than what we see. It reminds me that every person I see has a story that I can't see.  It reminds me to be kind when all I see is the hard outer shell of someone hurting.
    And it also reminds me just how good I've had it. I have sat by so many who have been kind, understanding, and sympathetic. It causes me to be so grateful as I returned to my seat, tears streaming down my face, as the gentleman next to me started playing with a fussy baby and even got him to laugh.  It reminds me to be grateful for the sweet angel I met named Margaret, who not only showed extreme kindness and empathy on the flight from NY to Dallas, but even offered to be a new friend for me in the city. (The kindness preceeded the pain...I did notice that.)
     I'm sure that I could have handled  our meeting in a better way. I'm learning. I'm still figuring out how to navigate life in the midst of some heavy things. But in the end, I know even our meeting and my tears were all part of my journey. And who knows? Maybe in some small way, I have been a grace in your life too...and perhaps seeing a momma with a fussing baby will never be the same for you again.  
The momma with the fussy baby

Tuesday, November 03, 2015

Elijah's exam

It's so hard, because it can start to feel a little like one step forward, one step back.
But that is why it is so important for us to think: marathon, not sprint!  This will be a long road for Elijah. And with his genetic
mutation, it just means he will need to be watched for the rest of his life.  Today's appointment was a good reminder, though. All of the time, effort, and resources going towards his treatment right now is so worth it. For moments like these:
When he does his nose-crinkle smile because he can SEE me!!!!! :-)

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

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

Someone asked me at some point in this journey why it mattered so much that he lost his other eye.  Two main things came to mind: one, without his prosthetic, it's like a wound that will never heal. I don't know how to explain it any better than that. It's a constant reminder that something was there, but it has been removed.  There's a void. 
And secondly, if you have ever seen me parent my children....I probably say about 50 times a day, "Look at mommy's eyes." There a connection that happens when you look someone in the eye.  

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

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

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

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

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

My sincere apologies....

To all who are staying at the Ronald McDonald house, especially those on the same floor as Elijah and I. :)
It's always a rough night after all the traveling, adjusting to a new time zone, and preparing to be up early (with no food) for anesthesia.  Elijah did NOT want to sleep in his crib. He also didn't want to sleep much with me either, but did better that way. :) 
By 5:30am, I decided we just needed to get out and walk. As soon as we were moving, Elijah did much better. Now, we are just waiting for his appointment.
Good morning New York!!!! There's something so comforting about the sunrise.  It's like a breath-taking reminder that there is so much more going on than just you and your life. It is a reminder that whatever darkness or difficulty the night has brought, the morning will come with new light and perspective.  And everything that has seemed still and inactive bursts forth with life.
Good morning!

Monday, November 02, 2015

Goodnight moon...

Well, after a long day of's time to say goodnight. 
Up early for Elijah's EUA (exam under anesthesia) tomorrow.

Goodnight moon.

Run with endurance.....

Elijah and I are just getting ready to board our flight. Elijah had a rough day yesterday and he is tuckered out!
I saw this sign at the airport on our very long walk to our gate:
1953 was the first commercial transcontinental flight between New York and LA.  
In a strange way, it made me think of all the many who have gone before me. Maybe they were traveling for different reasons, but they made this trip too.
It reminded me of this verse in Hebrews:

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

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

It was hard to say goodbye this morning. Standing in the middle of a quiet room with the kids sleeping and's always hard to leave them, even if only for a few days. I miss them already.
But this is the race that has been set before us right now.
Oh Lord. Give me endurance to run in way that gives you honor.

Wednesday, October 28, 2015


So, it's dress up night for youth group
Here is Mary Poppins and the Holy Bible. I love the creativity of these kids. This was fun. :)