Bubbling

It has been a quiet weekend at home.  First, Anthony got this video of Zinnia Thursday...pretty cute!

We played lots of drinking games to try to keep Esther hydrated and running smoothly...it seems constipation comes easily to her body and can make her really sick, so we need to be on top of her meds and hydration.  Her favorite game this week was watching our VBS video and taking a drink when we saw friends we know from church. 

Overall, she's felt pretty well, not too pukey, fever free, and happy.  It's so nice to be home.  I'm pretty sure she'll have bloodwork done on Tuesday to check her counts, but they might let us wait until Thursday.  She is looking a little pale and has been sleeping a lot, so I'm a little worried her hemoglobin is low and may need a blood transfusion.  She needed two the last round, so it's likely she'll need another.

I feel some emotion bubbling under the surface.  It's hard to define.  Hopeful dread?  Every family I've met at Children's is coming for treatment because they've had a relapse.  We wanted to stay away from knowing much about the long term prognosis for neuroblastoma, but it's unavoidable because the ugliest part of this cancer is that it often comes back.  I'm trying to not look to the future, seek grace for today and for the most part have been successful in not predicting Esther's future in this life.  But it's hard, when I teeter down that path and meet yet another family who is fighting their 3rd or 4th battle with this disease, I shut down.  It's more than I can bear. 

I am comforted that her eternity will not include disease and pain.  My honest fear is that she will suffer and lose the battle with this disease.  I want to hope and find God's goodness in it all regardless of Esther's journey.  I don't know His plan and question. But I know the character of God.  God is love.  God is kind and good.  So are His plans. A friend sent me a link to a song by Mercy Me, "The Hurt & The Healer"
I posted it at the end if you'd like to listen. 

Why?
The question that is never far away
But healing doesn't come from the explained
Jesus, please don't let this go in vain
You're all I have, all that remains

So here I am, what's left of me
When glory meets my suffering

I'm alive
Even though a part of me has died
You take my heart and breathe it back to life
I fall into your arms open wide
When the hurt and the healer collide

Please pray for our hearts.  Anthony misses Esther.  He stayed home from church today so he could get some time with her.  We've been short with each other and the kids.  My heart is numb, tired.  I feel emotions bubbling, but they seem so far off.  The song continues...

Breathe
Sometimes I feel it's all that I can do
Pain so deep that I can hardly move
Just keep my eyes completely fixed on You
Lord, take hold and pull me through

I can't do this.  I can't muster up faith or trust.  This can only happen when my eyes are not fixed on the doctors, the treatment plan, journeys that belong to other kids, or my own desire for Esther's life.  For my family's life.  I miss being mommy.  It breaks my heart that instead of teaching Esther to greet people at church, to look in their eyes and say good morning, I am teaching her to tell her nurses and doctors thank you, to greet them when she knows they may have to do something that will cause her pain.  I have to teach her not to scream when a needle is near, that those times when the numbing cream had worn off or the ER nurse had to poke her twice don't happen every time.  That she doesn't have to be terrified of a bath because the aquaguard is going to tear her fragile skin only to be met moments later by alcohol because a dressing must be changed.  She used to love taking baths, now she is terrified of just a few seconds in a gentle shower.  

Please, Jesus, keep my eyes fixed on you.  I need Him to hold me up and pull me through because this journey is unbearable.  I pray the rest of this song would be my hope, not in this life.  Esther's hope is not in this life or in her survival, this is a temporary dwelling.  Our home is not on this earth, our happiness and satisfaction will not be found here even in the best of circumstances.

It's the moment when humanity
Is overcome by majesty
When grace is ushered in for good
And all our scars are understood

When mercy takes it's rightful place
And all these questions fade away
When out of weakness we must bow
And hear you say "It's over now"

Lord, would you please give me the grace, pour mercy over my heart, that I would bow and bless your name when you say about this journey, this life, "It's over now" regardless of Esther's future.  The song finishes with a plea...  

Jesus come and break my fear
Awake my heart and take my tears
Find Your glory even here
When the hurt and the healer collide