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.