Filled to the Measure

 I am worn thin.  I am weary.  Watching Lily suffer, endlessly, has taken its toll on me.  I have been pulled in more directions lately emotionally and physically than I can even count.  And certainly  more than I can handle...alone.  At the end of a much needed chat with my sister Lori, she reminded me that the only thing to do during a time like this is to bury myself in the word.  To carve out time, every single day, between just the Lord and I.  To breathe in his promises and meditate on them.  

Ephesians 3:20-21 are perhaps two of my absolute favorite verses in the entire Bible.  "Now to Him who is able to do immeasurably more than all we ask or imagine, according to His power that is at work within us, to Him be glory in the church and in Christ Jesus throughout all generations, for ever and ever!"  But the gems buried directly before those verses, that I tend to skim through to get to my "favorites", were salve to my soul today.  

How grateful I am to know this love that surpasses knowledge!

"For this reason I kneel before the Father,

from whom every family in heaven and on earth derives its name

I pray that out of His glorious riches 

He may strengthen you with power through His spirit in your inner being, 

so that Christ may dwell in your hearts through faith.

And I pray that you,

being rooted and established in love, may have power

together with all the Lord's holy people,

to grasp how wide and long and high and deep

is the love of Christ,

and to know this love that surpasses knowledge -

that you may be filled to the measure

of all the fullness of God."

Ephesians 3:14-19

Catching some rays yesterday afternoon

 

Lily had a very rough day today.  She woke up feeling yucky, and it turns out that her sodium levels are very low again.  I feel like I am experiencing the worst case of deja vu, and I am quite certain that the Prednisone is making Lily hyponatremic just like the Budesonide steroid did.  Lily was given a couple saline boluses, and they held two doses of her diuretics.  I feel like the past week of working so hard to get the fluid off Lily has all been for not.  But I agree with the team that it is important to keep Lily safe from seizures, even if it means that she will be puffy again. 

As frustrated as I am.  As defeated as I feel, Lily continues to amaze me.  She always reminds me that no matter what, I must always choose HOPE.  This morning Lily gently wiped the tears that streamed down my face as I placed her in the wagon.  On our ride around the Heart and Kidney Unit, Lily sang, "God is faithful, God is faithful!"  

Yes Lily Grace, God is faithful...always.

 

There is a very important meeting scheduled tomorrow, Monday, here at the hospital to discuss our Lily Grace.  Jacques and I have prayed that God will make our decisions clear and our path for Lily known.  Please join us in praying for that miracle.