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 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. :-)

Sunday, June 05, 2016

Early morning check in....

Well. Let's just say that the delays didn't stop where I left off. :-)
The flight was all over the place due to the weather conditions in New York. But it is 1:30am, and we are checked in, the beds are made, and we are hoping for some sleep. At least one of us is. :) 

I'll be honest. Today was long and hard. Elijah had a difficult time on the plane, and I wasn't able to stand up much due to turbulence. That just means a lot of crying, screaming, and stares from various people surrounding me.

But, let me just practice thankfulness, because there are so many reasons to be thankful.  Here are a few:
1. By God's complete kindness, another family that I know from CA was traveling to NY on the same flight! This is a sweet little boy that our family prays for so often, and so it was so precious to see them and to not feel so *alone*.
2. Ben told me he would pray for an empty seat next to me. Which NEVER happens. But today it did. :)
3.  I had the most amazing companion in my row.  Her name is Lisa, and she has fought her own battle with cancer. Not only was she so gracious and friendly with Elijah despite his *loud protests*, but we had a truly delightful conversation, and I just felt....again, less *alone* in the journey.
4. Since I was flying to a new airport, and was getting in so late (or shall I say early), it worked out perfectly for me to share a ride with my friends who were headed to the same place anyway! 
5.  The amazing Ronald McDonald House in New York.  It feels more and more like family every time.  I had called to let them know I would be checking in super late, and requested that a crib be in the room so I could get Elijah to bed quickly.  Not only was the crib waiting for us, but we were greeted with smiles, familiar faces, and such excitement. 

And as I lay my head down tonight, I am thankful that God never wastes the difficult moments in our lives. He uses them to strengthen us and build character up in us. So we pray that when the morning greets us, that we will find ourselves stronger after having made it through today.  Goodnight!

May the God who gives endurance and encouragement give you the same attitude of mind toward each other that Christ Jesus had...
Romans 15:5


"He may delay because it would not be safe to give us at once what we ask: we are not ready for it. To give ere we could truly receive, would be to destroy the very heart and hope of prayer, to cease to be our Father. The delay itself may work to bring us nearer to our help, to increase the desire, perfect the prayer, and ripen the receptive condition."George Macdonald

Early this morning, we all loaded up in the van.  Ben and the kids dropped Elijah and I off at the airport, with plenty of time to get through security and find out.....our flight was delayed. Twice.

Quite honestly, it isn't that big of a deal for us-although I do wish I had a stroller, since it's a long time to have Elijah on my back.  It means a very late arrival into the city, but in the Lord's kindness, I flew out on Sunday instead of Monday this time so that Ben could take me to the airport without affecting his work schedule. So instead of being at the hospital early tomorrow morning, I'll have a day off to recover from travel.

I got to thinking about delays in often they feel like interruptions and intrusions upon our plans.  I love the above quote by George MacDonald. It is a reminder that even delays are a kindness of our Father.  His delays are for our good.  So, Elijah and I are getting to know LAX. He fell asleep and even though I was *hoping* he would sleep on the plane, it was so nice that I got to take a break and sit down for a bit.

Oh Lord, may I wait upon You and hope in Your Word.  May I trust you to give, and to delay as You see fit.

Psalm 130:5-6 I wait for the LORD, my soul waits, and in his word I hope; my soul waits for the Lord more than watchmen for the morning, more than watchmen for the morning.

Wednesday, June 01, 2016

Early morning...

We left early this morning to head to CHLA.  Elijah has to have blood work and see his oncologist.  Since I was gone yesterday (saw the neurologist), I took Ezra and Noah today as my *helpers*.

As so much of this becomes familiar-the drive, the pokes, oncology clinic, I am very thankful that my kids have a positive view of it all. I am not usually short on volunteers to accompany me to CHLA. It gives me the opportunity to spend time with individual kids, helps them to be part of Elijah's care (which makes it less scary), and I think it grows their compassion and sympathy. Not to mention, I try to include food.

The poking part isn't fun, but I'm glad we are checking on Elijah to see how he is doing.  We leave Sunday for NYC.