Monday, October 24, 2016

Change of address...

For now, until I get the app/blog situation figured out, I'll be updating here:

https://needforhope.wordpress.com/

Sunday, October 23, 2016

Noah Benjamin....

Dear Noah Benjamin,
     Turning ten has welcomed you with a harsher greeting than I would have chosen.  You have always had a bit of a tender heart, but these last few years you have really matured in this area. I didn't know how having braces would be for you, but you rarely ever complained and handled it better than I could have hoped for.  This year, on your birthday, mommy and daddy will both be gone, taking your little brother for a cancer check up to see if he needs more chemo.  Sometimes on your birthday, dad is at work, and it's a normal day with schoolwork and chores, but mom has never, ever been away from you on your birthday.....until now.
     I am so thankful for some very special traditions that we have, which make this year more palatable.  We got to spend the morning as a family, all celebrating you today (a few days early!). We also get to have our special dinner at Grandma's house with the cousins. I don't think any of my kids will ever remember a birthday without thinking of dinner at Grandma's.  You have requested beef stew for dinner, as well as fruit salad and lemon meringue pie.  You have such a tender and compassionate heart-so loving and affectionate. You never go to bed without giving me at least one hug....if not many more. You are my special helper who takes Elijah outside to play in the morning. It is so sweet to watch him point at you and then drag you around the house to find shoes so that you can take him outside. :)
     You are working your way through Teaching Textbooks 7, and have almost finished Rod and Staff English, Grade 5.  You are amazingly artistic. You love others so deeply and it is such a joy to see the way you remember others in prayer and bring such love and nurture into our home.  You are very friendly and agreeable, and I'm so thankful for the special friendship you have with your big brother Caleb. You quite obviously look up to him, and genuinely enjoy his company at all times.
     Noah Benjamin, my heart hurts to not be with you on your birthday. My heart hurts for the many ways that things have been more difficult this year. But oh! I am so thankful!!!! I am thankful for the chance to celebrate you before we leave, I'm thankful for Grandma and Grandpa who love all you kids so deeply and celebrate you with such joy and service. I am so thankful to spend time with the cousins, and hey, when you add any number of people to our already large family, it sure does feel like a party!!!! I'm thankful for the ones who are giving of their time and their lives to serve us by watching you guys! Grandma Connie and Grandpa Ron, Grandpa and Grandma Nash, and the Norris family. I know that each one of them loves you so much that you may hardly even notice that mommy and daddy are gone.
     And while a momma never wants things to be hard for her children....sometimes it is the difficult and hard things that build the most character. Sometimes, a momma has to let it be hard for her children, and entrust them to their Creator and Sustainer. So Noah, I entrust you to the One who is called Faithful and True. I beg of Him to cause you to know in the very core of your being that you are loved and treasured beyond measure. I celebrate you and all that you bring to this family with your smiles and your jokes and your love.  It's hard to be the middle child sometimes. But Noah....I see you. I see you growing in your service to our family, in your diligence in your work for school and at home, and I see your dependability when it comes to helping with the younger ones.
     Your name, Noah, means "to comfort."  You are a great comfort to our family with your smiles and your silliness, but this year, I pray that you, personally, would know the comfort of the God of all comfort. That you would know how high and how long and how deep and how wide is the love that He has for you. And that you would continue to look ahead with joy and excitement, knowing that His plans for you are good, even when they are sometimes hard.  Happy birthday a little early Noah!
With love,
Mommy


Saturday, October 22, 2016

Birthday Boy

My sweet boy,
     Eight years ago today, I was anxiously awaiting your arrival.  With contractions on and off for about a month prior, I had almost given up hope that you were coming at all.  Not even one contraction that day, when I sent your daddy off to work night shift.  I called him just a few hours into his shift, almost in tears....and Daddy knew something was up.  When he got home, he found me in the shower and not too long after, you made your grand entrance into the world and became the first of our children to be born here at home.
     I think that is part of who you are.....I think you will be the one to blaze a trail to many "firsts" in this family and in the world!!
     You are a fantastic reader, although you would much prefer to be doing something active. =)  You were so excited about getting Heeleys....it only makes mama a little nervous since you have already had stitches, glue, x-rays, and a couple of CT scans.  You excel in your use of language, as well as math, science, and pretty much whatever you put your mind to...but only on the days where it suits you.  You recently began Teaching Textbooks 5, Rod and Staff English Grade 4, and you are so happy to finally be learning cursive (it took mama a long time to order your book).  At Groups, you are taking Astronomy, Chess, and Legos.  
     One of the things you were so excited about as you turned eight, was the possibility of watching the Narnia movies for the first time.  We snuggled in and watched The Lion, The Witch, and The Wardrobe.  Daddy had read it aloud to us a few years ago, but this was the first time you got to see the movie.  I asked the older kids, "Do you remember what it was like when you saw Aslan for the first time?"  As I watched the movie, I could identify so strongly with the battle scene.  Peter, still so young and unsure if he was ready to lead an army into battle.  Stepping out where he had never been before, unsure if he would even emerge alive.  And the thing that struck me the most this time....is that Peter and Edmund entered the battle before help was on the way or even an option.
     Many times this year, I have felt like I was entering a battle that I was not ready for.  Many times, I haven't been sure if I could keep going.  And often, as we have prepared for trips to NY and not knowing what treatment or when or so many details for the trip....it has felt like entering a battle not knowing if Help would really come, but needing to just trust and believe that it would.
     My darling Ezra.  In many arenas, your heart is fearless.  But there will times ahead where fear will come fast and fierce.  You will feel as though you are facing battles that you may not feel ready for and aren't sure you can win.  And even if you step forward with courage, you may find yourself wondering if Help really will come.  In those moments, you have to go back to the moment when you first saw Aslan.  He is the most terrifying,  most beautiful, most gentle, most powerful lion...And even though he is not tame, HE IS GOOD.  Aslan is a picture...He reminds us of Jesus.  Jesus is terrifying in His strength and authority, in His sheer power and command over creation...but He is gentle, patient, compassionate, and good.  Remember the moment when you first saw Jesus.  And even more than that....remember the moment, after the dark night where the lion was slain, when the sun rises, and there stands the lion shining in the brilliance of the sun.  Jesus is alive.  He has conquered the greatest enemy we have.  It is His strength that gives us courage for the battle.
     Your name, Ezra, means "Jehovah is my help."  And Lucas means "bringer of light."  My prayer over you, my sweet boy with the heart of a warrior, is that by the help of Jehovah, you would bring light into the darkness.  When the enemy threatens darkness, I pray that you would be one who would shine the light of Jesus with courage.  And I pray that no matter what battles are ahead for you, I pray that God would always give you the faith to remember that first look at Jesus, and to KNOW that help is coming.  He is your help.  He is your strength.  And HE alone is always worth the battle.
     Happiest of birthdays to my sweet boy.
With love, and for the King,
Mommy


Wednesday, October 19, 2016

Quick update and Teaching audio

I'm having technical difficulties, so I haven't been able to update the blog.....(when would I ever sit down in front of a computer?????). I'm hoping to have this fixed before I leave for NY on Monday so I can keep everyone up to date on Elijah Bear.

In the meantime....I had the privilege of teaching on 1 Timothy Ch. 4, and here is the audio if you're interested.  :-)

https://soundcloud.com/user-450515923/1-timothy-ch-4-at-ccsb-the

Friday, September 30, 2016

Home...

(side note:  I have an app from which I can post to the blog, which automatically posts to Facebook as well.  I'm having trouble with the app since updating my phone's OS, so...if I don't update much, you'll know why.  I'm hoping to have it all worked out soon.)

My amazing Irish friend, Janet, took such good care of Elijah and I on our last night in the city before heading home.  She got us a STEAK (and we are talking GOOD quality meat here!).  I was excited for Elijah to try it for the first time.  Unfortunately, he was in a mood, so he just wanted to scream at me and wanted nothing to do with the delicious steak.  Finally, I decided to try putting Elijah in the bath.  He has happy and playing, and I didn't want the food to go to waste so I brought it in the bathroom to eat.  WELL!  Elijah decided he would enjoy his food much more while he bathed. 
I think he ate half of that steak!

Saying good-bye to the East River.

We found a cool little play area at the airport just across from our gate.  I know many were praying for us and our trip home.  I really don't have words to describe our return, other than to say that we made it, that part of this journey is behind us, and I am really thankful to be back home.


We made it home just in time for Caleb's check up at the endodontist....which revealed that he will need another root canal.  The tooth next to the one they have been working on had also partially come out in the whole trampoline incident.  The doctor has been watching this tooth and has seen changes that indicate he will need a root canal on that tooth as well.  While we were pretty bummed at this news, we are so thankful for a very diligent and thorough endodontist, who has become like family to us, and glad he was watching this tooth and knew when it needed treatment.

Tuesday, September 27, 2016

All Things


"And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them."
Romans 8:28

Elijah and I made it into the city and to the hotel. I was so exhausted I didn't know if I could actually get up and walk. I considered having food delivered but the hour wait time detoured me.  We headed out to Whole Foods, which was such a mad house that we left.  I had noticed a pita place so I headed over there. The price was more than I was hoping to pay, and after I ordered, I noticed that the only seating was upstairs (Elijah was in the stroller). I decided we would have to take it back to the hotel, but I was starting to feel faint from exhaustion and hunger.
Just about a block away from the hotel, I quickened my pace to make the crosswalk light....when the paper bag holding our food gave way and out tumbled our food onto the sidewalk.  I salvaged what I could, and we made our way back to the hotel room. By this point, Elijah was almost inconsolable for about 45 minutes so we decided to get loaded back up and head out for a walk.

Our friend Joey, who may have been in a work meeting with two of his associates.....invited us to come and crash their dinner meeting at one of our favorite cafes. I was worried about Elijah not having eaten, but Joey ordered his favorite frozen yogurt and fresh berries, which he happily devoured. He also, against my wishes, ordered a chocolate cake....which was like food for my soul. :)

Joey's associate and friend, Theresa was missing her boy (whose birthday it was), and so she gladly held Elijah and entertained him in his curiosity as a chemist mixing sugar and water. Joey and Taymour also enjoyed feeding Elijah, playing games with straws...
At the end of a long and wearisome day, I cannot say what a grace it was to have friends come around me and help with Elijah, and engage in pleasant conversation....not to mention the yummy food. :-)

We had a fantastic evening and Elijah slept wonderfully from 10:45pm when I put him to bed, until 2:15am when I woke him for his last feeding, and again until 5:45am when I woke him to get to the hospital.

It was a good reminder that many times the difference between a day ending badly and a day ending well is whether or not you keep going. (Although let's be real-there are those days that just need to be over.....think: early bedtime!)

Anyhow. We got to the hospital by 6:30am, and because we were trying something different with his anesthesia, he had to be poked twice for his IV (mostly because he was thrashing about.)

I took him back and laid him on the table and took a few deep breaths. I got Ben on the phone and then waited for the doctor.

The tumor near Elijah's central field of vision is growing again. The doctor carefully explained our two options: laser, or more IAC (intra-arterial chemotherapy.). He said that it is highly unlikely that they will be able to kill this tumor with laser without taking out his vision. So, the doctor felt that the best course of action at this time was to laser the tumor today, and loosely plan on chemo next month. (The doctor did go so far as to mention that he checked to make sure the chemo doctor is available in four weeks).  We will be back in four weeks, and our appointment lands on October 26th, which is my son Noah's 10th birthday.

When I saw the date, immediately so many things came to my mind. God's Word says that all things He is working for my good.  Even this? Even disease, and chemo, and missing important birthdays?
ALL THINGS.
I can't always see it, and I don't always understand it.
But I thought of how the campground had been closed for Noah's birthday, so Ben took him on his 10 year old camp out early.
I thought about how Ben was home with the kids when we got this news, so as we told them with me on speakerphone, they had the comfort of having a parent with them.
I thought of so many ways that God has been in ALL things.

And so, while this wasn't the news we had hoped for....we will just have to expand our "All Things" file.  I have always had compassion for families walking through childhood cancer, but never anything compared to what I have now. Now I breathe it with them and feel the ache in my chest with them.
And not just cancer, but so many other difficulties that children face.
These last 19 months, I have discovered strength that I KNOW does not come from me. But I would not have found it if I didn't need it desperately.
There is joy that would never have been mine, as I nurse Elijah in the quiet moments. I delight so much in each moment I have with him, and in many more moments with all of my children, because I can't take it so easily for granted that tomorrow will come.
There are countless ways in which these last 19 months have been for my good, Elijah's good, and our family's good.  And all the ways that I can't see the good....well, for now I'll tuck those away into the "All Things" file and ask for the faith to believe when I don't see.
He is with us.
He is for us.
In all things.



Thank you for praying with us and for us.



Monday, September 26, 2016

The Test....

It's 3am and we are on our way to the airport.  :). A friend of mine was posting about getting ready for their trip to NY this week as well, and I could relate so strongly to each mixed-up bottle of emotions.  
We sort of have a routine going. I even wear the same outfit for traveling (with minor changes for season, etc.). Due to construction at the RMH, we won't be staying at the house this time. Our hotel is only 10 blocks away from RMH, but in Manhattan, it's a whole new neighborhood. I'll have to find a new health food store and a pharmacy to buy diapers and wander the isles. 
We are doing a quick turn-around this time-I'll fly back Wednesday night and Ben starts his new shift at work early Thursday morning. New things all around.

Sometimes, it feels a little quiet with all the newness and change. I long to hear God speak to me and make sense of some things.  But the other night, I heard something really profound in a movie. The character said, "You know better than any that the teacher is always quiet during a test."

This rung true in my heart. How many times have one of my kids asked me a question during a test, to which I respond: "I can't tell you during the test. I'm trying to see what you know. When you're finished, we will go over it together." 

And so, even when it's quiet, and even when the changes are difficult, confusing, or hard.....I take such comfort in knowing that the Teacher is there! Perhaps quiet, but always comforting and providing and just being near.  

It was so neat though, the airline allowed Ben to accompany me to the gate, so it was nice to have my friend around until we boarded.
I think Elijah enjoyed it too:


Wednesday, September 21, 2016

Big Accomplishment

Judah Sean Hester has finished the Sing, Spell, Read and Write program! Hooray! We are so proud of you Judah and we can't wait to see what adventures await you. There's a whole world just waiting for you to read. :-)

When one of our kids finishes Sing, Spell, they get a special frozen yogurt date with mom and dad.  Judah was so motivated, he finished a few days work today so that he could have his special date!
And my favorite:
A special treat and prayer time to celebrate this big accomplishment!



Thursday, September 15, 2016

First Day of Speech Therapy!

Elijah bear had his first speech therapy appointment, which will soon be followed by his first occupational therapy appointment next week. He felt like such a big boy that when he got up from his nap he wanted to color like the big kids.
SO happy!!!!! Pulling around the little puppy toy and saying "woof, woof."  And in the last week or so, he's been saying "Maa-mee!"  Today the minute Ben walked in the door, he yelled, "Daa-Dee!"



Thursday, September 08, 2016

Unpacking the suitcase...

Due to traveling so frequently back and forth to NY, it became overwhelming to think about actually unpacking and packing again every time. I decided that it was in my best interest to leave my suitcase half packed. I remove the clothes in order to wash them and all, but I just have a second toothbrush, travel shampoo, etc. that stays packed in the suitcase. It's one less step when we are preparing for a trip to NY.

I'm the same way with hotels. Or when we stay at the RMH. I never unpack all the way. In fact, I leave as much packed as possible and live out of my suitcase. I would say it's because I don't want to do the work of unpacking everything, but I end up doing that anyway as I repack the suitcase when we leave.

But it got me to thinking. Unpacking is the feeling of settling in, a sign of being home with no immediate plans for travel, a sign of setting your roots down.
Yesterday, we took Elijah down to CHLA for his MRI.  We know that, while developing tumors in the brain is rare, Elijah has already fallen into the "rare" category a few times-both with his cancer, the young age of his diagnosis, and other things of that nature.  We also know that the average age for developing these tumors in the brain is two years after the initial diagnosis....and we aren't there yet.  But childhood cancer is really the feeling of remaining half packed. It's keeping an extra toothbrush ready to go because you just never know when and if this beast is coming back.

As we sat in the waiting room, I told Ben, "It's taking too long." What is usually an hour long had turned into two hours and I was getting anxious. It was reminiscent of the day they found tumors in his remaining eye. I remember sitting in the waiting room, with a screen that told me how long Elijah had been back in "surgery."  I kept watching as the number of minutes crept higher and higher.  I remember the progression that day in my thoughts from "that seems to be taking a little longer....", to "its been longer than normal...", and finally to the pit settling in my stomach as I knew it was way too long.

I felt the same way yesterday as the minutes crept by to a time well past normal. I was a little distracted by the shooting spasms of pain in my back that had given way as they had me bring a screaming and thrashing Elijah into the MRI room.

I am so thankful Ben was with me yesterday. When I finally received the report, I braced myself for whatever news may come, and breathed a sigh of relief as I read through the report and realized that there was no signs of cancer outside of his eye.  There are, of course, signs of disease in the eye, but we can't tell from the MRI if they are active tumors or not.

So, while this is GREAT news!!!!!! You can't help but feel a little bit like you are still half packed.  There's just too much still going on for us to unpack it all.  We leave the toothbrush in the suitcase because we head back to NY in three weeks.  

No matter what is ahead in the future, I was meant to remain as a traveler-a sojourner-in this world.  There are joys to be known and memories to be made, but they will all give way to greater joy when we finally find ourselves home.  It's the forever tension of living in one world while awaiting my place at home in another.

My suitcase is still half packed. But you know! A sojourner doesn't always know the destinations. Leaving the suitcase half-packed is also a sign of hope: maybe one day, we will not be traveling to a hospital but to a vacation!!!!  For right now however, this is our journey.
Even in the scary moments where the scans or the surgeries/exams take too long....there are memories to be made and gifts to recognize and be thankful for.  It was by sheer accident on our part that Ben was able to be with me....although I know it was planned perfectly in the heart of God.

So today, we are thankful for the good news we did receive, but we aren't unpacking the suitcase. Not until our sojourning is over and we reach our home.

"For this world is not our permanent home; we are looking forward to a home yet to come."  Hebrews 13:14


"Beloved, I urge you as sojourners and exiles to abstain from the passions of the flesh, which wage war against your soul. Keep your conduct among the Gentiles honorable, so that when they speak against you as evildoers, they may see your good deeds and glorify God on the day of visitation."  1 Peter 2:11-12





Saturday, September 03, 2016

Hope Rising Video

For those of you who were unable to attend the Hope Rising conference, or for those of you who just need some encouragement in Hope, here are the links to the videos of the main sessions. 

May God continue to unite us around Jesus Christ, who by His blood has secured our hope.

Session ONE--Hope Uprooted: https://www.youtube.com/watch?v=b8Y0K_3pXHo

Session TWO--Hope in Darkness: https://www.youtube.com/watch?v=jvV5JLaIHzQ

Session THREE--Hope For the Future: https://www.youtube.com/watch?v=0_Eb8asB2Mk


Tuesday, August 30, 2016

The Need for Hope

Yesterday, I sat with a beloved friend in a room with her daughter's body that had been overtaken by cancer.

There are so many people in our lives these days-so many CHILDREN in our lives with cancer, that when my 3 year old daughter prays, she has started praying for "no more cancer" even in those who don't have it.  

So many that we love and care for are riddled with pain or disease or loss....

Not to mention that so much of our own life involves appointments and anesthesia and night terrors and watching and waiting to see what this destroyer called cancer will do next.

I have also had the amazing privilege of standing with, sitting with (like yesterday) or being acquainted with those who have endured unspeakable loss....and while it has crushed them, and broken them, and uprooted them....the power of Jesus Christ has allowed them to not be overtaken. With aching hearts, they still get up and believe that He is good.  So today, I honor these faithful ones. They dare to call me to a courage that goes beyond this life and looks to the next one.  They give me the strength to endure because the power of Christ really IS made perfect in my weakness. They remind me how much we all need Hope, and that in Christ....I have it.  
And so with this Hope, I long to proclaim to every hurting heart, every broken body, and every soul that is weary: Jesus is real.  He will return. He is perched, upon a white horse, waiting for the command of the Father to RIDE IN. His name is Faithful and True. And when He comes, our hopes will be realized, our hearts will be mended, and we will know the unspeakable joy of life without sorrow or sin.  Come. Lord. Jesus.

September is Childhood Cancer Awareness month. Childhood cancer receives only 4% of the research funding for cancer.  Please join me in praying for the many little warriors who are fighting this fight. Pray for their families to have the hope of Jesus Christ in the midst of the most difficult circumstances. Pray for the comfort of the Holy Spirit to abound.

The great preacher of old, Martyn-Lloyd Jones, at the end of his life, was said to have told those who would pray for his healing to stop it because they were "holding him back from glory." Oh Lord, give me those eyes to see that this life is just a shadow of the glorious one, where the mountains are higher, the trees are taller, and the goodness of God is so great that I need a new body to handle it. 

And pray that the Lord would continue to send laborers into the field so that many would be brought into the Kingdom of Light. May we long for the return of the King of Love with such strength that we are actually moved into action.  Through the power of the Holy Spirit, let us have more compassion and kindness than ever. Let's speak gentle and kind words, because we never know what brokenness will be met by them.  Let's love radically because the glory of God is on the line.
We need Hope.
Jesus is Hope.
Let's make Him known, for the sake of His name and His Kingdom!!!!

Friday, August 26, 2016

Halfway Between Broken and Healed

As much as I love it when Elijah has a good report at the doctor, I have to be honest that there's always a part of my heart that holds back just a bit. Probably because we've heard good reports that turn into bad reports and because they have prepared us by saying that his genetic mutation just means that there is always a chance for regrowth.

It doesn't mean I don't celebrate the good news--it just means that I don't take it to be the last word. There's still tomorrow, and no one really knows what tomorrow will bring until it comes.  And honestly-I pray it brings the return of Jesus! Amen?

Anyhow. So, I did rejoice in the good news of no new tumors for Elijah, and the two remaining seem to be inactive-meaning, they aren't growing.  I love this news!  This is wonderful!!!!! Elijah has had 4 good exams since his last chemo surgery, the longest he has ever gone with out treatment since he was diagnosed a year and a half ago.  

But as I'm in NY, thinking about getting home, my mind turns to the practical stuff. I still have to make it home, and there's too much to carry, especially with a bulged disc in my back.  I call the airline, who only offers assistance to those with disabilities. Well, okay. I'm learning to humble myself and so I'll take the label of "disabled".....which disability would they care to write down-my son's cancer, the bulged disc in my back, or the injury to my rotator cuff?  (No, I didn't actually say that, I just thought it.)
We arranged for a representative of the airline to meet me at the gate to help me get all this stuff onto the plane. (JFK has longer terminals, so I really didn't have a way to do it on my own.). 

There's something so hopeful about moving forward with the confidence that where you need help, it will be made available to you.  I wasn't stressing about a thing because I knew someone would meet me and help me get to the plane. This was part of the new challenge of traveling with a car seat. I have to push the stroller with the car seat sort of hanging on it, as well as pull the roller bag with 3 other bags dangling from it, as well as holding Elijah (who is, of course, not very happy at this point).

Then at the end of the terminal gate, I have to remove the car seat, fold up the stroller, and then get the car seat to our row all while holding Elijah and pulling a roller bag.  Needless to say, I was just happy to know that I would have help. I even started thinking, "This might have been one of our easiest trips in regards to travel."

When we got to the gate, I told the airline representative about the arrangement for someone to meet me and help me. Let's just say, she started off pretty rude and condescending. I politely asked her to look up our reservation in her computer, to which she said that although there was a note in my account stating that I was to receive help....it was not a service they provided and so I was on my own.

There is something especially dejecting about thinking you will have help, and then finding that you won't.  As they allowed me to board, I gave new meaning to the phrase "those who need extra time to board."  I would push the stroller/car seat contraption about five feet in what can only be described as a zigzag pattern, and then come back and drag the roller bag.  This worked for about 10 feet, until the stroller and car seat combo fell over, the roller bag fell over, and I sat blocking the terminal gate, fighting back tears, trying to hold a crying toddler and feeling so.....humiliated. 

I know that one of my weaknesses is in not always admitting my need for help.  But this time I did.  I called ahead, I acknowledged that I could not do this on my own.  And then people stood around and watched as it was proven true.  It's not that I really cared so much what people thought....it's that all my energy had been spent-getting up with Elijah at 1am, waking up at 3am to gather all of our things and clean the room, check out of RMH, get uber to come, install Elijah's car seat, get to the airport, print boarding passes, get through security.....and here I am in the middle of a terminal gate with all my stuff sprawled across the path so that no one can get through, boarding a plane I don't want to get on-except that this one is the one that will get me home.

Finally, an airline representative did come and help. Most likely it was more because I was keeping everyone else from boarding by blocking the way....I guess that only because there was so many opportunities prior to that to help me for the sake of kindness.

I got Elijah's seat installed and we made it home. I knew I would have the same problem exiting the plane, but this time I got everything mounted on my roller bag, including the car seat which I banged my hand on every row that I passed, until a flight attendant noticed that I was holding up the whole plane by moving so slowly.  He came and carried the seat off the plane for me.  I got Elijah buckled, got the bungee cord to attach the car seat to the stroller, and just as I stood up, I saw an airline representative standing there with an electronic sign with Elijah's name on it.  The irony sunk in, as I realized I finally had help....and I no longer needed it.

This experience is one that I never want to repeat. But I will in 5 weeks.  I will keep going and keep getting on a plane, and keep trying to find better ways to make it work and keep putting one foot in front of the other because that's what Elijah needs right now.  It got me thinking about Jesus, and the many he healed when he walked upon the earth.  He touched them, and power went out from Him. The person receiving that power KNEW they were healed.  Instantly, they felt the difference of healing power coursing through their veins.  And yet, as far as we know, they still died.  The curse of sin was still at work upon their body, bringing about the decay of death, even as they were healed.

It's a paradox. They were healed. But they still died.  Death, rather than being the curse of separation from God, in Jesus just becomes the means by which we pass through into full and complete healing. We know healing in part, but then, we will know it in its fullness.

I thought about how in sin, we are all walking towards death and decay, and separation from God. But because of the cross and the resurrection, Jesus sets us on a new path. It's a little scary because it still leads towards death....but He went through that path, and He conquered its power so that the path now leads towards healing and life in the presence of God.

As Elijah and I walked through Central Park, I saw hundreds of workers and volunteers working on the sprawling green spaces that make the park so beautiful.  These workers were actually almost laying in the greenery, meticulously pulling out each weed that threatened to take over the beautiful space for the plants.

I thought, no matter how much God works on me, no matter how much transforming work He accomplishes in me, there's still weeds that need to be pulled out. God is a faithful Gardner-He will even lay down in the midst of the dirt and muck of my heart and meticulously pick out the weeds that have grown up.

He has healed me by setting me on a path that leads to freedom from sin and suffering, and living in the presence of God.  But there is still so much brokenness in this world. There are still hard things that happen in the midst of hard things--even when there is good news.

And so, while this trip meant good news for Elijah, it wasn't exactly the easiest trip.   This trip, well, it was about halfway between broken and healed.  The joy of Elijah's report while still walking in the brokenness of a world that no longer stops to help people who need help.  That's just the practical reality.  We rejoice in the good news, and yet the reality of life right now is still sometimes difficult.

But today, not only am I SO glad to have made it home, but I am glad that even if I'm just somewhere in the midst of the journey....even if there's weeds everywhere in my green places that need to be pulled up.....even if there's still hard things, and I feel like I'm somewhere in between broken and healed--the end destination is complete healing, in the presence of God with joy everlasting.





Tuesday, August 23, 2016

A good report!

Elijah is doing great! No new tumors and the two remaining tumors appear to be inactive.  They do not detect any "live" cells, however it is always a possibility moving forward. For now, we are just stoked for this good news and we will be back in 5 weeks!

Monday, August 22, 2016

Swept off to NYC....

"It's a dangerous business, Frodo, going out your door. You step onto the road, and if you don't keep your feet, there's no knowing where you might be swept off to."--J.R.R. Tolkien


We got up at 2am after I successfully spent yesterday afternoon avoiding packing. :-). We left the house about 2:45am, and while several phone calls to TSA in advance did not seem to help us much in the security department.....Elijah and I made it through. 
This is all the stuff, with the car seat bungee-corded to the stroller. Delta was kind enough to have someone help me push down the terminal since I was carrying Elijah at that point.
We got onto the plane and I got the car seat installed.
Elijah only slept about 20-30 minutes the whole flight-which actually surprised me. He wasn't entirely happy, but words cannot express how much easier it was-even when he was crying and upset, he was not thrashing against me or kicking someone next to me. And, I could eventually calm him down with snacks, or by rubbing his sweet little head. So! All in all, I think having Elijah in his own seat was a HUGE answer to prayer. I don't know how we will keep that up, but I really do think it made an amazing difference.
Lugging the car seat around brought some new challenges.  When I went out to grab a taxi, they informed me that there was about 400 people in front of me (literally.). So we did Uber instead, and the man was SUPER nice, let me install the car seat, and I'm pretty sure he was a believer.  I had some trouble keeping my eyes open at this point, and so did Elijah:
But it was fun to hear all about this man's life.
When got to the FDR, and could see the East River, I knew we were close.
They gave us the warmest welcome including a couple of toys for Elijah, beautiful smiles and hugs, and they even had a room "pre-assigned" for us and a crib waiting. :) we weren't sure if we would get to stay at RMH since they are doing major renovations....so this was a super sweet blessing and just made a long day feel so much less tiresome to be greeted by....well, our NY family. 

I'm so thankful to be here, and on the ground. We will turn in early tonight since one of us is very tired and we have an early morning at the hospital. Thank you all for praying!!!!!



Wednesday, August 10, 2016

Fracture....


Yesterday Caleb was having fun at the Santa Barbara skate park. It is a special treat because we don't always get up that way.  I had to race home to get Emma to dance, and just as I arrived home I got a phone call from Ben. He said that Caleb had fallen and caught himself on his arm, but he most likely needed to go to the ER. We met at home and took Caleb over.  

He has a fracture in the wrist, and although the elbow looked a little funny, they think it looks okay. Evidently the treatment wouldn't have been much different if the elbow were involved so they just treated it as if it were.
Caleb has a fiberglass cast for now, which is very helpful because he can take it off to shower and such, as long as he is disciplined to not do much with it.

We will see the doctor at the end of the week and they will decide what happens from here.  Out of seven children, this is our first fracture. That's probably a miracle in itself. :-)

Oh Lord. Thank you for protecting Caleb from anything more serious. Thank you for great medical care.  And thank you for this boy who smiles, even though it isn't exactly how you want the last few weeks of summer to go.


Monday, August 01, 2016

Hope Rising.....

You know, it's been a pretty crazy year and a half for our family.  In February, I really felt the Lord place it on my heart to do a conference for women, with the theme of Hope. More and more, we see heartache and hurting around us, and more than ever, we need the HOPE that only Jesus Christ can offer.
I am so excited to join with two of the dearest friends as we desire to proclaim the hope of Christ, the goodness of God, and the return of a Great King....
Together, we want to look forward to the day when Jesus Christ will return and set all the wrong things right.  We desire to declare how good and faithful God is....even when it's hard and painful and you don't know how you are going to make it.
We want to encourage each other that as the times get harder, we need to unite around Christ and hold each other up.  We need each other more than ever.

So, if you're available, please consider joining us on Saturday, August 20th, 2016 from 9am to 4pm at Calvary Chapel in Santa Barbara.  Share! Tell the ladies you know who might need to be encouraged that they are not alone. Let's come together, and worship the One who is worthy of our Hope.


Tuesday, July 12, 2016

The Brooklyn Tabernacle!


Our church is currently re-reading through Jim Cymbala's book Fresh Wind, Fresh Fire.  It is the story of how the Holy Spirit moved mightily through prayer in the congregation of the Brooklyn Tabernacle.  So I thought about how cool it would be to visit! I knew I wouldn't be able to go on a Sunday....but even more special would be to attend their Tuesday prayer meeting!!!!
Well. It didn't quite go as planned....Elijah fell asleep in the stroller on the walk to the subway station.  I had to wake him to put him in the ergo, and then carrier my bag and the stroller down to the platform. Elijah was so mad, he cried the whole way to Brooklyn.  
We made it to the Brooklyn Tabernacle
And discovered that instead of their usual prayer meeting, they were having a play. I was a little bummed, only because Elijah was already so upset, I didn't think I had much chance of him sitting through a play.
The lady at the front was so kind. She started asking questions, and had me fill out a prayer card. She walked Elijah and I (and our prayer card) down to the secret prayer "bed" (I think that is what she called it???  Boy oh boy! Did I walk in on a prayer meeting!!!! The group of men and women surround Elijah and I. They anointed Elijah with oil and went to town praying. I'm pretty sure we got spit on a little bit, but whew! It was amazing!!!!!!  And then they walked us back through the actual sanctuary area and took a picture of us on the stage!
We sat down for a little while, but with an hour and a half before the play even started....I was pretty sure we wouldn't make it.
So, we loaded up and began the trek back. I'm not feeling that great tonight but it sure was an amazing experience and I will go to bed thankful!!!! :-)




Great News!!!!!

Elijah's exam went SO well! NO new tumors, NO regrowth of old tumors, AND his blood work has returned to normal (after the doctor told me he had never seen levels as high as Elijah had.)

We are so thankful! Rejoicing in this news for today!!!!!

Back in 5 or 6 weeks! 

Monday, July 11, 2016

Long day of travel

Yesterday was a long day of travel! We left our house just before 2am, boarded the plane by 4:45am, landed at Newark around 2pm, took the Airtrain and just missed the New Jersey Transit train, so we had to wait almost an hour for the next one. We took the New Jersey transit train to Penn Station in New York, then (I met a lovely couple who helped with the luggage and the stairs and the Subway) took the Subway to the Upper West Side.  Then I got on the cross town bus, which let me out just a few blocks from the RMH.

    Elijah and I were exhausted! We crashed at 8:30pm....and after a pretty decent night's rest, felt much better today!  Thank you to everyone who was praying.  Today, we adventured over to the Children's Musuem of Manhattan, where Elijah had a blast!!

We headed back to our side of town and are planning to keep it simple for the evening since we have to be at the hospital at 6:30am tomorrow.

I'm so thankful for the prayers and for a good night's rest! It sure does make a difference.





Friday, July 01, 2016

Caleb Paul, age 12


Dear Caleb Paul,
     There are so many stories these days of young men who go off on an adventure, and discover that they have amazing giftings or powers inside them.  It is the super heroes who look around them and see that things are not always as they should be....and they rise up to meet the challenge of pushing back the darkness and fighting for the light.
    But in order for a hero to rise up and find the strength to face darkness....he has to somehow be made aware of the darkness.
     This year brought some really difficult moments. Well--you know that because you were the child who had both mom and dad gone on your birthday last year. So many other kids would have allowed bitterness to grow in their hearts.  It has been difficult, having your mom (who formerly never went anywhere!), now flying across the country every 4-6 weeks, gone for a few days.  Some would have allowed this to make them angry because they didn't understand why their baby brother had to get cancer.  And then, there was the dear man in our neighborhood who had a crazy-brilliant mind like yours. You two had lots of fun together, and dad was so surprised by the spot welder you made together (with help from your brother Noah).  So, it could have been so discouraging to have finally found someone who understood you so well.....and then to have him pass from this life into the next one.
     Yes, this year has brought its share of difficulty.  But what has been so amazing for this momma-heart to watch....is that instead of bitterness, anger, and discouragement....you have allowed the grace of God to rise up within you.  This year, more than ever, you have discovered the power within you--the Holy Spirit of God which brings comfort when you're sad, when you're lonely, and when things didn't go how you wanted them to go.  You're finding the grace of Jesus Christ and His sacrifice on the cross to be sufficient to cover your mistakes, and the mistakes of others.
     When I asked you what this last year had taught you, you told me that you learned to trust God more.  You said that with everything that happened with Elijah, with his cancer and treatments and going across the country, you learned about how God can bring good out of the most difficult circumstances.  You learned to trust God, even when someone you loved greatly left this life, because the life he gained eternally in the presence of Jesus had become more real to you this year.
      Caleb Paul. I have not met a young man so faithful, disciplined, and diligent as you.  You are amazingly gifted, and if you are not naturally talented at what you put your hands to, you will persevere and endure and practice over and over again until you master it.  I am constantly humbled and amazed by your super hero power.....and I recognize it as the power of God at work in you.  You have a super hero power inside you. It is a gift, given by God for the joy of the world and the building of His Kingdom.
     And while many times, my heart ached over the hardships this last year brought, I am so, so thankful for the Light we have seen more clearly. I am honored to serve a Great King beside you. I love being your mom. May you continue to rise up along with the grace of God, to find strength to meet whatever is ahead for you, and may you never stop learning to trust God more.  No gift I could give you is as great as the one the Father in heaven has given you-the sacrifice of His Son Jesus, and the Holy Spirit to be your Comforter and Teacher.  May you experience these gifts to greater degrees as you rise up to push back the darkness. May you know the great love the Father has for you.  You are not a warrior who fights only out of duty, but a warrior who is greatly loved and valued.  May you grow deeper in your love for God's Word-may it come alive to you as you read it, and may you be transformed by it as you understand its wisdom and beauty. May you grow in your communication with the Lord, and may you begin to truly see how much of the battle is won by getting on your knees.  And when you rise, and when you fall, may you always, always find the grace of God to meet you in that place, and carry you on to greater things.  
     I cannot fathom the wonderful adventures that await you. I love you.  Happy birthday. I pray that God's blessings would overwhelm you with love and joy today. And I'm so glad Daddy and I get to be with you on your birthday this year. :)
With love,
Mommy

     

Monday, June 20, 2016

On Father's Day....

I have a wonderful Father. He is kind-hearted, hard-working, and just a little bit ornery. :). He and my mom traded off working a second job to make ends meet, and they faithfully took us to church every week.

I will be honest though-I don't think I ever knew how hard my parents were working, or how much they sacrificed, or how much energy it takes to be a parent....until I became one.

So, a great deal more of appreciation for my own father, comes in watching my husband as a father to our children. It is in seeing him bear responsibility for providing for our family, that I begin to understand what my father must have felt all those years of working two jobs, or the sorrow he must have felt at times when he didn't have a job, or the constant struggle of trying to provide for us all.

It is in seeing Ben come home from a long day's work, tired from a night with little sleep, that I recall my dad rocking with me in the rocking chair after a bad dream.

It is in our struggle to find time and money to put our own children in lessons or classes that would grow them in their giftings, that I understand the sacrifices that were made for my piano lessons and gymnastics.

And all of this together, makes me think about the wonder and beauty of our Great God. He is a good Father. And in His infinite wisdom, the Father knew that so much of our understanding of His heart toward us would be bound up in our experience.  So the Father didn't just say, "I love you."  But He showed that love to the fullest extent by placing our sin upon the shoulders of Jesus. Jesus suffered in our place-that we might know the comfort of one who has endured the fullest extent of suffering.  The Father endured the pain of watching his beloved Son as he carried the full weight of sin's wrath upon the cross.

There is such a deep sorrow in watching your own child suffer.  Especially when it seems so unfair, and so unjust. To watch needles and poison and wires be poked into your tiny, precious flesh and blood.  But there is an understanding of the cross, of the Father's heart that comes with it, which makes it all so much more real-so much more painful, and yet so much more precious.

In those moments of watching Elijah have blood drawn again, or of keeping everyone on "lockdown" because he doesn't have an immune system....my love for them is never decreased. In fact, it is exponentially increased, because I feel pain for what they must endure, but I know that it is necessary.  The pain that we allow now, we hope is in some way allowing for a better future.

All this to say, this Father's Day, I love and honor my father, and his hard-work, sacrifice, and faithfulness, without which I surely would not be who I am today.

I bless and honor my husband, who is one of the hardest working men I have ever met, known, or seen. His willingness to serve us is beautiful, rare, and costly. He loves to say to me, "How can I rescue you?", and he truly does delight in being my knight in shining armor.  

But for us all on Father's Day, may we look to Christ, and see forever the full and complete love that God the Father has for us.  No matter what your experience of a father has been, no matter what sorrow your heart has known....His love for you is sure. He has declared it in the beauty of creation, in the provision of relationships, in so many blessings day after day that we may or may not notice.
The love of the Father has been forever declared by the cross of Jesus Christ. The Father's heart broke as His Son bled.....but He saw the good that would come from it: the redemption of the hearts and souls of many.  

This Father's Day, I look to the cross and I remind my heart that suffering in this life does not mean that the Father does not love me.  It means that His heart toward me is ever beating with loving kindness, and that not a minute of sorrow or suffering is wasted. Whatever He has allowed is surely producing something wonderful for myself, and others, that I cannot yet see.  And so today, I will look for the gifts: the tiny miracles all around, the clouds in a beautiful blue sky, the voices of so many precious little people, and of course, a father and a husband who faithfully join with the chorus of creation that declares the love of a Good Father.  

Oh! I want to honor and bless my Heavenly Father all my days! But in the end I find, it is always Him- loving me, redeeming me, rescuing me. Father's Day is another chance for me to echo back the worship that all creation is declaring: He is good! And His steadfast love endures forever.


This is a picture of Ben, holding Elijah, and dancing in the airport to ease some of his discomfort. Isn't it just like a good father, to hold us and dance with us even in the midst of our troubles?
This is my dad, at Judah's birthday celebration, holding Evelyn. There are always bear hugs and good stories to be found on grandpa's lap.

And. This picture is just too fun. Ben, you are always full of adventure and you bring so much FUN! to our crazy life.

Wednesday, June 15, 2016

Big Day!!!!

The picture is blurry because he was moving so fast!!!!

So this guy, at 16 months old, would not even attempt to take a step-even with the walker.  

We headed down to CHLA today where he had a hearing test, and another blood draw. His oncologist came in with such a sigh of relief and said, "His numbers are down!"

They are still high, but are significantly lower than last week. So we will continue watching just to make sure they keep heading in the right direction.

One of our conversations today included him not walking, and the possibility of neuropathy as a side effect from the chemotherapy. 

When we got home, I was chatting with Ben when I heard a commotion!!!! Elijah was barreling through using the walker and making car sounds every step of the way.

So good news on his counts! And it looks like maybe he does want to learn to walk. :-)

Wednesday, June 08, 2016

When the Cloud Continues....

It's a rainy afternoon here in NYC. Elijah is wiped out so we are having a quiet moment in our room. 

I was reading this in Numbers the other day, and it spoke straight to my heart:

"Now on the day that the tabernacle was raised up, the cloud covered the tabernacle, the tent of the Testimony; from evening until morning it was above the tabernacle like the appearance of fire....At the command of the Lord the children of Israel would journey, and at the command of the Lord they would camp; as long as the cloud stayed above the tabernacle they remained encamped.
Even when the cloud continued long, many days above the tabernacle, the children of Israel kept the charge of the Lord and did not journey."
Numbers 9:15-19

     I don't know what cloud is covering you.  But I do know this....sometimes, there are places and seasons and circumstances in life that leave us longing to journey. To high-tale it on out and MOVE ON.  
     I feel the desire in my heart, as I see pictures of sweet, beautiful family vacations taken by friends.  I think of things that I might like to do or see or experience with our kids.  But for this time and this season, the cloud continues.  I am not to move on...I am to press on.  I am to keep the charge of the Lord and not journey. I am to plant my feet and be faithful with what's in front of me.

     Long story short with Elijah's bloodwork... His numbers have gone up higher than they were.  It could be nothing, or it could be something.  At this point, our course of action is to go back to CHLA next week, retest his blood, and possibly run some more tests or scans.  I'm tired sometimes, of fighting for his care and phone calls and emails and not getting straight answers.  But the cloud continues....and so it is not time for me to journey on to the next thing just yet. It just means that the fullness of this time and this season and this circumstance has not yet been accomplished.

     But the most beautiful thing about this story, this reminder to continue in the charge of the Lord, is that the cloud wasn't the circumstances. The cloud is the presence of the living God. That's how I know I'm not to move yet. His presence is beckoning me to stay here, with Him, and to keep His charge. He is still working in this place, this season, and this circumstance.  And I want His work to be carried on to completion, because He does the best and most beautiful work.

     So, I may not have a whole lot of answers. But I'm staying here while the cloud continues, and I'll look forward to the day when I receive the command to move on.