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,


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.

Tuesday, June 07, 2016

Elijah's exam

As Elijah is getting older, he gets pushed back a little on the schedule for the day. It was very busy today so he was seen much later than usual. 

The doctor said he looks great! No visible signs of cancer regrowth, and we are to return in 4 or 5 weeks.

Last week, there were some abnormal results in Elijah's blood work. They retested today during his exam but we won't have results until later today. :)

Thank you everyone for praying!
New York at 5am. :-)