Tuesday, January 26, 2016

To Elijah Seth

My beautiful baby boy,
      Today marks one year since you were born. I remember the anxiety of awaiting your arrival....with contractions that kept coming and going.  I remember going to see Dr. Cole on the morning of January 26th, and I walked into the office thinking, "Are these contractions doing anything?" He announced that I was dilated to about 5 cm.... He also informed me that if you didn't come that evening, then I would be back the next morning to go to the hospital for a little pitocin to help things along.  I remember feeling like my body was just malfunctioning and unable to do this whole "labor" thing correctly.  Karni was so patient-even when all my contractions stopped for an hour and I was fully dilated.
    That morning, this verse was part of my Bible study:
     "A woman, when she is in labor, has sorrow because her hour has come; but as soon as she has given birth to the child, she no longer remembers the anguish, for joy that a human being has been born into the world." John 16:21

     The moment I held you in my arms, I was undone. It never gets old. That moment, where you first hold this person that has been growing inside you, in your arms.  In those early days of your birth, I remember thinking how special the time was. It really felt like it was just you and I, in our own little world of joy: feedings, diaper changes, snuggles. It was pure bliss.
     I wasn't ready for all that to change.  But are we ever ready?  You were so little when we found out you had cancer. 7 weeks old.  I remember one of the night doctors when you were admitted (I'm sure she was SO tired), but she asked me, "Is he hitting all his milestones? Sitting up? Rolling over?"
I looked back and replied, "He's seven weeks old."  You only lived 7 weeks before all the poking and prodding started.  We had no idea how life would change, and neither did you.
     This year has gone faster than any of the years prior.  This year has been one of the hardest, and yet one of the best all at the same time.  It was full of heartache and sadness...as we learned of your cancer, and then the genetic mutation we hoped you didn't have.... But it was also full of adventure. You traveled to NY eight times before your first birthday.  Because of you we saw the Statue of Liberty, the White House, and we discovered the amazing restaurant in Pennsylvania.  We lived the equivalent of a month's time in our van between the two trips across country.  But also because of you, our hearts were opened to a world of childhood cancer. A world where compassion and sympathy run deep and hope is needed at every turn.
     Your name, Elijah Seth, means "appointed by Jehovah, God."  To appoint means to decide on beforehand; to establish.  There is not one doubt in my mind that you were appointed by God for so many things. In one year of your life, nothing has been or ever will be the same.  Our lives have been delightfully altered from their previous course. 
     One last thing that I remember so well from that day you were born. As you made your way through the birth canal-your body was halfway out (with a surprisingly large midsection). Karni was telling me to slow down and breathe. But you, you were ready. So you placed both of those tiny feet against me and kicked with ALL your might to free yourself and finish your grand entrance into this world.
     You are a fighter.  As a mom, I would wish to spare you from this cancer stuff, this life of *fighting*.  But you were a born fighter. 
     And so, my darling boy. My prayer for you is that you would live each moment to the fullest-as you have taught us to do. I pray that you would stand firm for what is true, even when you stand alone...just as the Old Testament prophet Elijah did against the prophets of Baal.  And I pray that even though you have lost one eye and will continue to fight for the other, I pray that you would know deep in your being that seeing is a gift from God. One that is not always dependent on the physical ability of the eyes.  There are those with eyes who miss seeing so much. I pray that you would be one who sees-- sees the hearts that are heavy, is willing to hear the cries of the hurting, and will fight against it all with the compassion and kindness of one who has been comforted by the Lord.  May you continue to be a fighter-a mighty warrior of the Lord whose struggle is not against flesh and blood. May you be one who pushes back darkness and hatred and despair by the power of Jesus Christ, who is himself light, love, and hope. My prayer is summed up in the words of Paul to the Ephesians:

      1do not cease to give thanks for you, remembering you in my prayers, 17 that the God of our Lord Jesus Christ, the Father of glory, may give you the Spirit of wisdom and of revelation in the knowledge of him, 18 having the eyes of your hearts enlightened, that you may know what is the hope to which he has called you, what are the riches of his glorious inheritance in the saints, 19 and what is the immeasurable greatness of his power toward us who believe, according to the working of his great might."
Ephesians 1:16-19

      Elijah Bear, I do not ever stop giving thanks for you. I pray that you would have wisdom and insight to see things as they really are. And I pray that the eyes of your heart would know the hope you have, the inheritance waiting for all who love Christ, and to know the great power that is at work on your behalf.  Never stop fighting....our King is always worth the battle.

With all my heart,
Your first taste of cake. 
Your last day of the first year of your life. You're pretty tuckered out-it's been a full year!


Monday, January 25, 2016


My big two had to write an essay on celebrations. In an effort to show them what I meant in regards to their corrections, etc, I felt like I should write the same essay. It comes in perfect timing, seeing as how we are *celebrating* a certain someone's first year of life tomorrow.

Lisa Hester

January 25, 2016


 I can still remember the dish filled with jellied candies that my grandmother had out on the end table whenever we would flood her home for family celebrations.  I remember the octagonally shaped end table full of games and hidden treasures.  Every single birthday in our family was spent celebrating at grandma's house. Each of these gatherings is like a thread, tying me to a past full of happy memories, and inviting me into a future of making new memories with my own family.

The dictionary defines celebration as "the action of marking one's pleasure at an important event or occasion by engaging in enjoyable, typically social, activity."  We can see many ways in which our culture has made each occasion for celebration into an extravagant affair: weddings have become a multi-billion dollar industry, we've made planning a 16th birthday party into a reality TV show, and birthday parties now include the expectation of leaving with a "goodie bag" to reward your attendance.  So is this the message we are left with? That celebrations must be extravagant, expensive, and well-attended in order to "mark one's pleasure?"

 In Biblical times, God commanded His people to celebrate feasts because He knew how prone they were to forgetting the great things He had done on their behalf.  He commanded them to celebrate the Passover, when the blood of the lamb caused the angel of death to "pass over" the homes of the Israelites. Over and over, we see God instituting feasts and celebrations as a way for people to remember the mighty ways He had acted on their behalf. And each of these remembrances foreshadowed His future coming, a time where He would set up His rule and reign in a Kingdom where wrong things are made right.

Past times in our own country have held less extravagant celebrations. Our own birthday celebrations growing up included our immediate family, a piece of cake with a candle, and smiling faces singing the traditional "Happy Birthday" song.  Other cultures have long since celebrated important milestones such as birthdays, weddings, and coming of age.  Although these celebrations vary from culture to culture in their decorations, attendance, and traditions, they all have the same purpose: a group of people, sharing in the same joy, have gathered together to remember what has been up to that point, and to anticipate with joy what is yet to come.

So, in the end, I believe that celebrations are much less about how you celebrate, but about why.  We have been given the opportunity to celebrate each moment that we live and breathe. Even the most mundane tasks, like doing the dishes, can be a celebration! Each dish that is washed is a remembrance of a meal eaten, and a hopeful reminder of many more meals to come.  Every candle lit is a reminder of the Light, Jesus Christ, come into a dark world, and a hopeful reminder that His return carries with it a promise to end all sorrow.  Celebrations are about remembering.  They are invitations to stop and slow our breath; they are opportunities to look for the gifts of grace all around us, and to enter into them with thankful, joyful hearts of praise.  In essence, each time we celebrate, we acknowledge that we have been given something good, something worthy of our time and attention.  We have the right to stiffen our necks and refuse to acknowledge the Creator's hand in this. Oh yes, we can chalk the gifts up to Santa or the Easter Bunny,  or our good fortunes. But in my experience, the very best celebrations-the ones that are the most true and therefore, the most joyful-are the ones which acknowledge the Giver of all things. The best celebrations remember the goodness of a God who is always working on our behalf, bringing all things to the climactic celebration He has planned for those that love Him, and will enter into the joy He has purposed since the very foundations of the world.  So whether they are extravagant, or simple, celebrations are links in the chains of our memories, reminding us that all good things began with Him, our Creator.  All good things find their meaning and culmination in Him.  And in between, we have end tables full of treasures and jellied candies to lead our wandering minds back to Him.

Tuesday, January 19, 2016

Adventures in NY

We did actually have a lovely time in NY, and I wanted to chronicle some of our adventures.
A short walk through Central Park....I normally do much more walking than we did this time, but it was much colder than it's ever been!!!  I think it was around 28 degrees this day.
The steps of the plaza. Underneath the plaza is sort of like a food court-more affordable options. :-)
I knew I wanted to bring the kids to Vive Le Crepe!  We chose two savory crepes and one sweet crepe. Emma chose Ham and Gruyere, Caleb chose Smoked Salmon, cream cheese, spinach and capers, and for dessert we chose apples and cinnamon.  They were delicious!!!
Followed up with NY's famous black and white cookies.
We rounded out that day by spending time with our friend "Mr. Joey", who cut Emma and Caleb's hair, and then a quiet evening back at the Ronald McDonald house. This was the one night that Elijah slept pretty well. :)
The next morning we met up with my friend Margaret for breakfast.  We had such a lovely time with her! And with her counsel, we were able to board the cross town bus and head toward the American Museum of Natural History. (I normally walk across town, but as I mentioned, it was much colder this time!)
We met up with a dear friend and her kiddos and experienced the Shake Shack. The black and white milkshake was ah-mazing!!!!!  The Kill girls so kindly indulged Emma's request of riding the subway!  We rode to Rockefeller Center and back.
We rode the bus back across town, where we stopped for some French pastries. Emma is learning French and receives extra credit for things she brings to class. So it was only right that we got some pastries to try after dinner, along with the bag and box she can bring to her class for credit.
A chocolate tart, a chocolate with passion fruit mousse, and an uzu lemon tart. SO good! We were all beat and knew we had to be up quite early for the return flight home. 
It was so cool! They had the music room open at Ronald McDonald, so Caleb was able to go in and play an electric guitar. He had been working on a song entitled "Though You Slay Me." The guys in there were so cool, they looked up the chords and gathered around him to play with him. He got to play the drums too!!
I had some food delivered to the Ronald McDonald house, and we began packing up.
Elijah had another rough night, but by 5:15am it was time to get up and clean what we could of the room and head out. By 6:30am we were in a taxi on our way to the airport!!! 
Aside from the 5 minutes of the fire alarm blaring and flashing at the airport (false alarm!).....it was uneventful. (Thank you Lord!) We were all anxious to return home and we are so thankful for the adventures we did get to have!!!!

Friday, January 15, 2016

To the passengers in 20A and B

Dear fellow passengers,
     You didn't know this, but I was dreading this trip.  It had already been five weeks since the last trip, and Elijah's exam was postponed due to sickness. My stomach churned at the thought of six weeks having passed without knowing what was going on inside him.  Not to mention that there is almost always something: a new tumor, an old one growing, something. 
     In addition, Elijah is getting bigger, stronger, and more resistant to the things he doesn't want to do. I knew that, like any almost-one-year old, he was not going to just sit still for hours on a plane.  I knew he would fuss and scream and thrash his body around while my weak back held on for dear life.
     To look over and see your beautiful, excited, awe-struck faces made ALL the difference. Please here me say that again: it made ALL the difference.  When I thought my back would finally give out, to have an offer of, "Would you like me to hold him for awhile?"  Or when I needed to use the restroom, to have trusted faces willing to entertain him.  To lug the hefty carry-on bags up into the overhead bins, or to share your tray with me so that I could have a drink without Elijah spilling it.
     I'm not sure you totally knew what you signed up for (we rarely ever do). The long day of travel, often going without meals, and the nights where Elijah just won't sleep. Having to pick Elijah up and bring him to me in the night, buckling him in the stroller as he fights with all of his might. And how it takes all three of us to change this kid's diaper. :-)
     Most moms, I'm sure, wish they could take their children on a trip where they can see and experience all that city has to offer-the major attractions, the sights. New York, perhaps more than most cities has so much to see and do.
     But this wasn't that kind of trip. Not once, did either of you complain or even mention the things you wanted to do that we didn't get to do. From the very beginning, you had the mindset that this trip was about helping me with Elijah.
     And so, to my sorrow, we didn't see many sights or explore the city much.  But to my absolute delight, you got to experience THE VERY BEST of New York City: it's people. And some very good food.  Rather than the top of the Empire State Building and its view of the city, you'll remember Joey having lunch with us and cutting your hair.
     You'll remember stepping into an exam room full of amazing equipment and seeing a team of the best doctors in the world, all giving their attention to your baby brother.
     Rather than a Broadway show (which I REALLY would have loved to have taken you to), you'll remember breakfast with Margaret, and how brilliant and kind she is.  You'll remember the brothers at Cafe Luka, and how they have made kindness their business.
     Rather than Times Square, you'll remember meeting the Kill family at the Shake Shack and riding the subway with the girls.
     And rather than a fancy hotel with long nights of sleep, you'll remember freezing because I couldn't work the heater. You'll remember Peter and Dominique from the Ronald McDonald House, as well as all the musicians who give their time to play with the kids at the house.  You'll remember Trucker and his mama, Miss Becky and her boy Nolan, and all the other families from the Ronald McDonald house who are fighting cancer, other illnesses or injuries.
     The trip was so fantastic. The memories we made were not traditional for a trip to NY, but they are exactly the ones I want you to have-for they will shape you and grow the seeds of compassion.  There are so many others that we missed this time-like Miss Janet and Donna and Dave....the list goes on and on.  But you got a taste of what truly makes NY great.  The people. 
     And the very best part of this trip for me, was looking over and seeing you two sitting next to me. Thank you.  I am so proud of you both and honored to be your mom, and to have shared this trip with you. Thank you for being willing to help me.  I love you Emma and Caleb.
Momma (from seat 20C)
PS-more to come on the exciting adventures we DID have soon.  :-)

Tuesday, January 12, 2016

Great News!!!!

We hit the streets after a short night of not sleeping much. Caleb slept through a bit of it, but poor Emma had to get Elijah out of the crib for me when he would cry.... Which was most of the night.
We did a good amount of waiting.... 
They decided to do a breathing treatment on Elijah to make sure he was clear and open for anesthesia.
He went back for his exam, and quite honestly, I was sort of preparing for bad news.
His doctor came and said there was no *measureable* growth!!!! (What that means technically is that they *suspect* a small amount of growth with their high tech gadgets, but it is not measureable or even detectable with the human eye. So. Just to be cautious, they lasered two spots that would not affect vision, they gave him a little Tylenol, and they will see him back in 7 weeks!!!!
Took the kids to grab some food, and asked if they wanted to explore. Since Elijah was sleeping so well in the stroller, they requested that we return to RMH and rest for a bit before we attempt any activity. Everybody is pretty wiped out!

But we are so excited about this great news!!!!

Monday, January 11, 2016

A long day....

I had the most amazing seat mates on my flight this time!
The first flight went pretty well and the kids loved getting to be on an airplane for the first time. (The second flight was a little more rough, and let's face it: Elijah was OVER it.) :-)
Then we had to ride the Skylink train at Dallas/Fort Worth airport.
Big sister sharing pizza with Elijah.
After checking in to Ronald McDonald, and Emma and Caleb making beds for me and helping to get a crib set up for Elijah....it was after 10pm and we hadn't had dinner.
So....pizza it is!  The pizza place around the corner is open until 1am.
Had to try the homemade tiramisu.
And last, but not least....it's FREEZING! We weren't *quite* prepared seeing as how we were still in the clothes we were wearing from traveling. But we couldn't help but take a very short walk so Emma could see this part of 73rd St., which I have talked about every trip for the last couple of months. It's so pretty!!!  The trees are lit up and make an arch over the street.
But we are ready for bed and have an early morning at the hospital!!!!
Good night!!!!!

Sunday, January 10, 2016

Change of plans...

Well, we have been working hard to make sure Elijah stays well enough to
go under anesthesia for his exam.

But in the meantime.....my back is acting up again.  It went "out" Thursday, we did the chiropractor on Friday, massage on Saturday. 

As we looked ahead at Elijah and I being on a plane and in NY together, with a momma who can't lift her baby....we realized we needed a change of plans.  I can walk, and I can hold Elijah for shorter periods of time, but I can't bend down and pick him up (say, out of a crib or a stroller).
Unfortunately, we just didn't have the resources to make sure the kids were covered here at home so that Ben could go with me.

So. My big two are coming.  Emma will be such a big help with Elijah, and Caleb will be such a helper with heavy lifting and helping with the tasks we will have when cleaning and checking out of RMH and all.

It was not exactly how we planned this trip to go. But we just have to trust that the Lord will provide and care for us.

I'm so thankful for these big two, willing to help with 2am feedings and taking out trash.  We will spend the day packing and trying to get what we need together and then tomorrow, we head to NY!

Tuesday, January 05, 2016

Blessed and Broken

I have always loved the story of Jesus feeding the five thousand.  It's such a beautiful story, of all these people, hungry for Jesus and for life and he meets their hunger for food as well. The disciples are telling Jesus to send the people away, and Jesus tells them, "YOU give them something to eat."
They respond to Jesus, "We only have five loaves and two fish."

Isn't it like us? When Jesus asks us to go and give and serve and love and we bring our excuses and our measly offerings.

But I don't have time.
I am not good at that.
What if I make a fool of myself?
That's not the position I want; I want something better!

We bring our excuses and God multiplies them to feed those around us who are hungry.  THAT, is beautiful. It is the hopeful and triumphant knowledge that it is not so much about what (little) we have, but about the God who multiplies what we are willing to offer up.

Today though, I read this all differently.  I happen to be studying the book of Matthew.  I realized that this story comes just after one of great sadness and tragedy.  John the Baptist, the cousin of Jesus, has just been beheaded at the whim of a wicked woman who didn't like being called out because of her sin.

I can only imagine that even though Jesus knew this was going to happen....it still broke his heart. His cousin was faithful, proclaiming the kingdom of God and a baptism of repentance, and he died a cruel death at the hand of unjust sinners.  It must have had a particular sting, as Jesus thought about what was ahead for Him.

So Jesus departs from there by boat to a deserted place by Himself.  He wanted to be alone to process it all and to pray.
But the people followed Him.
Perhaps that is one of the hardest things about grief or pain or sorrow....is that even as you're trying to process and pray and find your way through it, the needs around you don't stop.

I'm human. I get frustrated in this moment, thinking to myself, "I can't meet your needs because I'm trying to process my own needs and emotions."

But Jesus.  When He saw the great multitude of needs before Him, He was MOVED.  Moved with compassion. As in, His lovingkindness was so large that it moved Him beyond His own pain and grief.

And then the people are hungry and the disciples bring them the five loaves and the two fish.

But what happens before the food is multiplied?

The loaves and the fish....the meager offerings of the disciples....
They are blessed.
They are broken.

Before the offering could be handed out and made useful to the hungry people, it had to be blessed....consecrated and set aside....and it had to be broken.

Sigh.  Sometimes it is so hard to see that I am both blessed and broken.  I easily see one or the other, but rarely both at the same time.  Sometimes the hard places in our hearts have to be broken in order to be useful.  It is often not until we are broken that it can give way to the kind of compassion that MOVES us.

But the loaves and the fish were blessed, they were broken, and then they were used to feed and bless and meet the needs of many.

And after it is all done, and the needs are met, Jesus went up on the mountain by Himself to pray.  There was still so much to process and pray about.

This morning, I am here, with Jesus. I bring my measly offering, my excuses, and even my impatience at the needs around me.  I want HIS lovingkindness to MOVE me to have compassion for the needs around me.  I want to be used to meet the needs of others and to point people to the Kingdom that is lasting and true. 

And in this longing to be used for His Kingdom, I find myself just like the offering of the disciples:
Blessed.  And Broken.

Saturday, January 02, 2016


Well, Elijah and I were scheduled to fly back to NY on Monday. Unfortunately, we had had a case of the croupy cough going through. He was doing much better, but to be safe I took him to the pediatrician so they could listen to his lungs and clear him for anesthesia. He seemed to be doing well and he got the okay. However! That night, he became so much more congested.  We keep sucking his nose clear and doing all the normal at-home things we can. But after discussion with his nurse in NY, we decided that the best thing for Elijah is to postpone his appointment for a week.

I have so many mixed emotions about it all. Of course, I would never want to put Elijah at risk! They explained that even within a week of symptoms, going under anesthesia can cause symptoms to reappear and cause trouble.  I definitely don't want that for Elijah!
But, this is also the first time he has gone 5 weeks (instead of 3 of 4) since June!  I am anxious to get back and see what's happening in regards to tumor growth (or lack thereof!)

It's just another opportunity to slow down and trust the Lord.  Both Ben and I have had a cold, and I'm pretty sure I wasn't physically up to the trip in two days. So the extra week is better for us both to heal and get better. 

But it's always hard to be postponed. :)