Wednesday, July 7, 2010

Up, down, around and back again


The Netherlands wins the semi-final. I may have been one the few people at the hospital who cared about the World Cup yesterday, although I converted some nurses to cheer for the Dutch. I think my jersey helped, as did Noah's constant playing with a set of jingle bells during the game. It was a fun day and a good distraction from the stress of an on-again, off-again MRI.


Retching. We vent. He retches. He smiles. Repeat. No answers. Daily change in Drs., ideas, direction, medication. One foot in front of the other. Baby steps.


We may start feeding Noah continuously through the night. That is a workable plan for home (up every 4 hours just to fill the feeding bag). That means we will need a pump for home. It takes the pressure off the day feeds a bit, less volume, less time. He may start on some medication today to help with the retching. We are praying it works for Noah. It seems like taking steps back (he would eat 60% of his diet while sleeping and it takes us further away from oral eating), but now it is more about how we get home and help Noah get his nutrition. Baby steps.

Back Again

Sitting in our hospital room. My son sleeping. His tube feed running. My hands raised. The following to songs playing. Simple surrender. I sense God's grace. I see glimpses of Him all around - in people, in creation, in our precious son. Baby steps.

Matt Redman's "The Father's Song"

Selah's "Wonderful, Merciful Saviour"

(thanks to Brenda, my singing partner, for introducing me to Selah. Their music has been such a blessing to me over the years).

Can you share a song or poem that has encouraged you in the past or present?? Email or facebook me!!


  1. Oh my! I am very glad you could enjoy the game but the retching seems to be a constant. Night time feeding may be an answer. It allows you a greater opportunity to enjoy him in the day time. Every body's ideas though....Remember you know him best. To be able to still witness to God's grace in this is huge....His everlasting arms are around all three of you.

  2. You probably already know this one, but when times are tough I love Bring the Rain by Mercy Me.

  3. Darlene,
    I have chosen up to this point to be a silent observer - always following the updates, but choosing to remain in the prayerful background. I have also been wondering if I should share something that was of great help to me when Christopher was born with CF... but now that you've asked, here it is:

    I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this.
    When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michalangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
    After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
    "Holland?" you say. "What do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
    But there's been a change in the flight plan. They've landed in Holland and there you must stay.
    The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of famine and disease. It's just a different place.
    So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
    It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips. Holland even has Rembrandts.
    But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."
    And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.
    But if you spend your life mourning the fact you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

    By Emily Pearl Kingsley

    Every blessing,
    Love Lori

  4. As a real 'Hollander'I will say:
    True, Holland is a lovely country :-),and I understand what you mean, but even than: Noah's live is 'harder' than it should be!
    And so is the live of his parents.
    I hope and pray with all my heart for all three, that they are still going to Italy!!!!!!!!!!!

    Love, Anita den Hollander-Hart

  5. Hey Darlene, I have meant to post something here since I read your entry earlier this month.
    A song that I found particularly inspiring and uplifting during a time of trial (though nothing compared to what you're going through!) is "Shackles" by Mary Mary. The lines that really struck me are following:

    Everything that could go wrong
    All went wrong at one time
    So much pressure fell on me
    I thought I was gonna lose my mind

    But I know you wanna see
    If I will hold on through those trials
    But I need you to lift this load
    'Cause I can't take it no more

    Take the shackles off my feet so I can dance
    I just wanna praise you
    I just wanna praise you
    You broke my chains so I can lift my hands
    And I'm gonna praise you
    I'm gonna praise you

    Here's a link to the YouTube video:
    (I hope it works-it looks pretty random!)

    I love reading your's so inspiring! It also gives me a chance to know specific ways to pray for you, Jared, and Noah. Thank you for sharing so many details about how you're all doing! Keep it coming!
    God bless!