Wiersma Family Blog

WIERSMA FAMILY BLOG
A glimpse into our lives as a family with micro-preemies. Our twins boys (Lovingly referred to as our Miracle Men) were born almost 16 weeks early.

Our journey continues when our son Max was diagnosed with cancer at the age of 3. This is his story....


Monday, April 20, 2009

Bittersweet

We just got home from the hospital.  Wes actually had a really good day and has been able to come down on his vent settings by quite a bit, which is fantastic.  Max seems to be in a holding pattern.  He had another chest x-ray today and it showed no improvement in his lungs.  The theory is quickly changing from lung infection to chronic lung disease.  They do not diagnose a baby with chronic lung disease until they are 35 gestational weeks old, but his condition certainly supports this diagnosis.  Chronic lung disease can mean about a billion different things, and it is way too early to tell the severity of his condition.  He is very sick.  The waiting game is really starting to takes its toll.  The doctor also said that Wes looks like his PDA is opening again, and is leaning towards him needing to have the PDA Ligation surgery.  They will do another heart echo in a day or two to makes sure that is the right decision.  Kate and I really want to be happy about the progress that Wes has made (despite his open PDA), but with Max's situation it is very difficult.  We want to rejoice and praise God for the improvements, but this is so hard in the face of setback and unknowns.  With everything else that is going on in our lives right now, we just really want the boys to start taking strides in the right direction to give us some joy and balance out all of the heart break and anger.  Right now it does not feel like that is God's plan.  We just want to scream to God, "who do you think we are?  What makes You think we can handle all of this!!"  Send us relief Lord...our faith just does not seem strong enough to hold us together.

9 comments:

  1. Praying for strength for you & Kate!! Thoughts come to my mind of the poem "Footprints" and I pray that you will be able to look back someday and say that this was one of the times in your life where you only see one set of footprints in the sand!

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  2. I'll be holding up your precious boys in prayer, and I just e-mailed my whole church asking them to pray for them too. Thanks for being so faithful with the updates- it's nice to know the specifics of what to pray for you.

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  3. We're crying out to the LORD with you:

    "How long, O LORD? Will you forget me forever? How long will you hide your face from me? How long must I wrestle with my thoughts and every day have sorrow in my heart? How long will my enemy triumph over me?" (from Psalm 13)

    "Why, O LORD, do you stand far off? Why do you hide yourself in times of trouble? You hear, O LORD, the desire of the afflicted; you encourage them, and you listen to their cry, defending the fatherless and the oppressed, in order that man, who is of the earth, may terrify no more." (from Psalm 10)

    "I waited patiently for the LORD; he turned to me and heard my cry, He lifted me out of the slimy pit, out of the mud and mire; he set my feet upon a rock and gave me a firm place to stand. He put a new song in my mouth, a hymn of praise to our God. Many will see and fear and put their trust in the LORD." (from Psalm 40).

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  4. Praying that God gives you feet for this path you're walking - a rocky and challenging path with no end in sight. May you feel His presence every step of the way.

    Joel and Sarah

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  5. My heart cries with, and for, all of you! The selections from Psalms 13, 10 and 40 are great encouragement. David had many trials during his life. He spent many days on his face before God, asking for deliverance, asking where God was in his storms, asking "why?". While we don't know specifically the outcome of each cry to God, we do know that his faith grew and that he trusted explicitely in God. He came to know that, no matter what, he could trust God...and God called him a person after His own heart!

    My Bible study this morning came from Matthew 8:23-27 where Jesus and the disciples were in the middle of the Sea of Galilee when a great storm arose. The disciples were terrified and, in a panic, woke Jesus. He chided them for having so little faith and bid the storm to stop. He doesn't always calm the waters of our storms, but He is always right there in the boat with us, and He cares!

    I love Psalm 46:10, which you have been singing to the boys: "Be still and know that I am God." It seems especially appropriate right now when it's hard to hear the still small voice of God above the din of everything else that is going on.

    We are praying much for all of you during these difficult times.

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  6. Mark and Kate,
    My aunt died last week and I just talked to her daughter at the funeral home and she said that they have been saying "this sucks" a lot around their house....I think you need to give yourself permission to say THIS SUCKS! And let those of us that have the energy to pray for you and let us do it and carry you through.
    God knows the next 20 days, 100 days and 70 years. Rest in that none of this is a surprise to Him.
    Holly Heeres

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  7. Lifting you and your boys up in prayer. Stay strong!

    Rachel & family,
    Sioux Falls, SD

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  8. As I was driving home for lunch today, this song was on and ministered to me. I hope it does the same for you. Allie
    STRENGTH WILL RISE; as we wait upon the Lord.
    We will wait upon the Lord,
    We will wait upon the Lord.
    (repeat)

    Our God You reign forever,
    Our Hope, our strong deliverer.

    You are the everlasting God,
    The everlasting God.
    You do not faint, You won't grow weary.
    You're the defender of the weak,
    You comfort those in need.
    You lift us up on wings like eagles.

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  9. I know God will understand any emotion you need to feel. They are all normal and understandable. And, guess what? God is big enough to handle it all. He loves you that much and more. He loves your boys and your mom too. I cannot fathom what you are going through right now, but God can. He knows. He loves. We'll pray. We'll trust.
    Lots of love and prayers to you every moment I have even a split second I'm going to shoot up a little arrow prayer to God for you.

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