Posted by: myroadtoemmaus | November 4, 2010


The last week has felt a bit like a blur.  Some days have seemed to last for ages.  Others seem to already be forgotten.  I can’t remember what I was doing Tuesday afternoon or Sunday night or even yesterday morning.  But I can remember certain moments.  And ten years from now, I know that I will still remember these moments.

One of them happened this morning.  I was forewarned that the chloride sweat test (for CF) would not be a pleasant experience for Hannah.  Little did I know how much of an understatement that would be.  They strapped two electrodes onto her legs, one around her calf and one around her thigh.   Next, they turned on a machine that caused an electric current to push a medication through her skin that would stimulate her sweat glands.  The machine had to be turned on for five minutes on each leg.  My little girl screamed the entire time, not stopping for a single second.  Her entire body was sweating.  Her face was bright red.  Her heart was racing.  Nothing I did worked to console her.  It was awful.  I watched the clock as the time was winding down, wishing that I could just tell her, “Only two more minutes.  You are almost there.  It’s almost over.”  For thirty minutes afterwards, she tried to catch her breath, her lips quivering, completely exhausted and still trembling.  I held her so close and cried and cried.

But it was in that moment that God broke in.  It was as if He said, “I know how you feel.  I know what it’s like when I’m the only one who can see the clock.  I know what it’s like to see your child in pain.  I understand.  I don’t stand back and watch.  I don’t turn my head.  I don’t walk away.  I do what you did.  I hold you and I cry over you, too.”

A sweet friend shared with me this afternoon her sense that this week hasn’t just been about Hannah.  It has been about her mom, too.  It has been about the parts of my heart that are still broken, still yet to be healed.  It has been about the lingering questions that have never been answered in my life… about the God who allows suffering, sickness, and death.  I feel the lump in my throat even as I am typing now.  God cares too much about us to let chapters remain unfinished.  And there are chapters in my book that He is still writing… even when I tried to skip over those pages because they just hurt too much.  My lack of understanding does not diminish His goodness.

And this week… in these moments… as a new mom, I can feel Him starting to turn back to those unfinished chapters to show me that He isn’t far off and He hasn’t turned away.  He was there.  He was watching the clock.  He was holding me.  He was even crying with me.




  1. SO POWERFUL! I follow each day sending thoughts and prayers to the best of my abilities and I am blown away by your strength! A “veteran” mother of three ,I find myself humbled, learning from you… and revitalized on my spiritual quest. I should find words of comfort to send your way but in light of your courage and Faith, all I can say is Thank you for showing the way!

  2. EJ, I’m so glad your dad and Mary will be there tomorrow. It seems like having your dad there, particularly at this time with these unanswered questions, is yet another way God is holding you tight as your lips quiver, you are completely exhausted and trembling. I guess the other lesson is that sometimes we have to go through some pretty traumatic times to find answers, with input from some unexpected places. Sweet little Hannah has been through so much already but the goal is always the same, to make her well, to get her home, to love on her. Wish we were there to help.

  3. oh Lord, Eliza Joy…I was to the point of tears reading this. It’s amazing the revelation you’re getting through these moments. I’m amazed by your response, and though I haven’t had a chance to see you and your baby, I have to say I admire you. Thank you for sharing these deep thoughts and feelings. Oh I have no more words. Bless you, friend.

  4. Made me cry. Love you and continue to pray to our good Father.

  5. I love you EJ. I just wanted you to know we are thinking of and praying for you. I love the posts, it is so good to know what is going on and how you are doing so we can pray. This one is making me cry.

  6. keeeping you all in our prayers. hang in and God IS there for you and hannah. love ya,mema

  7. EJ – Hannah, and you and Russell, are both in my prayers and on my heart. As you so beautifully wrote, it is an amazing gift of grace that God breaks through. Always. I pray that you will see that again and again as we wait, pray, and hope for Hannah’s healing. Much Love – Trina

  8. Thanks for being real. I love you and wish I lived in Kansas City right now.

  9. Eliza Joy, I’m so sad to hear Hannah has been so ill! Not sure if you remember me, you bought a dresser from me. One of the reasons I write is to ask if the doctors have considered or checked into Pyloric Stenosis? I’m not sure I didn’t spell that correctly. Why I ask, is my daughter had it when she was 4 weeks old. Not common in girls & it took awhile for them to figure it out. God Bless you all & saying prayers!

  10. EJ and Russell, Our love to you and Hannah. You have been through so much. Such pain but such progress!! I am visualizing you walking out of the hospital whole and healthy. We love you and hold you in our hearts.

    Nene and Michael

  11. A friend of a friend sent your blog posts my way. I remember so vividly being in your shoes — new mom, sick baby, unknown GI issues…it can all be so overwhelming and scary. Our dear daughter had intestinal surgery at birth and 2 more emergency surgeries over the next 4 months…a year later she was also diagnosed with HD and IND, had surgery to correct the HD, and still trying to diagnose some ongoing issues today (she is 19 months). Your previous post brought tears to my eyes…I had sung the exact same song, “He’s got the whole world in His hands” to my daughter before she went in for emergency surgery…at the time I honestly wasn’t sure I was going to see her alive again. It is so hard to trust, but you know — God is there, holding and crying over you. I pray for you that God will lead you directly to the right doctors, to the right support network, and when your heart is overwhelmed, to the comfort of God’s loving arms. Blessings and peace to you.

  12. Eej, thank you for sharing your heart. I am so grateful for the way Abba has allowed you to feel His embrace these weeks. You are truly a beautiful fragrance to Him. Your post reminded me that He has some unfinished chapters to write for me too. So glad He will not relent. Love you.

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