Monday, May 6, 2013

A specific prayer request

There have been a lot of parenting moments lately where I wonder if I am failing miserably to raise my children with any sense in their heads.  Or if maybe they are being permanently ruined by having to live in a hospital for so long.  They have so much attitude sometimes!  I have to remind myself that I am raising a typical 4-year-old and a typical 2-year-old and that even if we didn't live in a hospital, and even if I was doing everything perfectly, they would still misbehave and act out sometimes.  Or all the time.  Tonight Jonah was mad at me for something and all in a huff and he said, "Mommy, you have lost your privileges to read to me from now on.  Only Daddy can read to me now."  He said this while sitting on the toilet which made it hard to take him seriously.  If he wasn't being such a stinker it would have been hilarious.  I have had to make an extra effort to be patient with him lately, because he's having a really hard time when he is told 'no'.  Parenting is already the hardest thing to do on the planet, but you add our collective stress level to any given discussion and it's pretty amazing that we all four still really like being around each other.  So I will cut myself some slack and believe that we are doing SOMETHING right if at least my son knows how to correctly use the word "privileges" and if he believes not being able to read books would be a serious consequence.  

Even though this time is hard, I refuse to pity my children.  It would be so easy to feel sorry for them, for having to be here, and let them get away with more than usual.  But that's not going to do them any favors.  God, give me extra patience and understanding for them, and the strength to discipline and teach them, even here.

Even with the extra energy we've needed to parent lately, things have been good the last week or so.  Caleb had a rough couple of days last week, throwing up a lot and just looking puny, but he has been much better the last few days.  That boy has a healthy dose of willfulness, I swear.  We have prayed for him to be a fighter since before he was born, and we see that in him in both wonderful ways and challenging ways.  (Caleb quote of the day: "I. Play. Ipad. NNNOOOWWW!)  When it comes to his health, I'm so thankful for it.  He will have a bad day or two and always bounce back.  Today was a very good day, and he even ate half an orange.  21 bites!  God has so obviously watched over him, because for a kid with a heart as sick as Caleb's, he has really done so well for the last six months.  He has rough patches and then he always turns around.  There is a lot to be thankful for.

I actually have a specific prayer request for this week.  Caleb will be having some blood drawn to check his antibody levels.  To refresh your memory, Caleb has some specific antibodies in his blood that most people don't have, due to the fact that he has had blood transfusions in the past.  There are SIX specific antibodies the transplant team has to check everyone for, because any person who receives a transplant not only has to match a heart by size and blood type, but also by these antibodies.  When Caleb was first listed, he tested positive for THREE of these antibodies, which the transplant team is almost certain is the reason it has taken so long for him to get a heart.  It has made it difficult to find a suitable match for him.  

To our huge surprise, a few weeks ago they did a routine lab to re-check these antibodies, and one of them was completely gone and the other two were significantly decreased.  We were never aware this could even happen!  The doctors said there's no real explanation for it but that it definitely helps Caleb's chances of finding a match.  This week is the next routine lab, and I am so anxious for some good news, to hear that maybe one or both of the remaining antibodies are gone.  Would you pray for this specific issue?  Would you pray with us that when they draw this lab, they find NO antibodies and that the team can change Caleb's status to be able to receive a wider range of donor hearts? This would be a huge deal and we are really hoping for some great news.  The test should be on Thursday.

Thank you for sticking with us.  It amazes me that so many people continue to follow our story and care about Caleb.  Thanks for having faith when ours gets weak.  We are so encouraged to know that so many people are in our corner!

16 comments:

  1. When my brother was in the hospital for a year, he was acting out and my mom was getting on him. Someone noticed and said sarcastically, I thought you LOVED him so much. My mom replied I do, but it is important that he grows up to be a good man. It is so important to discipline them. My brother did grow up to be a great man and wonderful husband. You guys are doing great.

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  2. Prayers being sent! I can't wait to hear more good news! You all are so strong!

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  3. Miracles do happen everyday and you guys are sure due a huge one. Praying that you will get it on Thursday and that will be just the beginning of more to come.

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  4. Katie, I see the faith of God's people moving those mountains (antibodies)so Caleb's heart comes soon and there will be no doubt it was God who made it happen! You have been on my heart more than normal, if that is possible, since church Sunday. I know how very weary you must be and rightfully so~just wanting to do something that would seem mundane (laundry) to the rest of us, is a huge deal right now for you. Praying for your strength as well!

    Isaiah 41:10

    So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.
    Isaiah 41:9-11

    And the story about Jonah is precious~made me smile! Love you all, Miss Pam

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  5. So glad to hear of God's miraculous work on Caleb's antibodies!! Just another confirmation of His daily watching over your precious family. You are right on with your thoughts on keeping things as "normal" as possible as far as parenting goes - you will all benefit greatly from your efforts. We'll be praying specifically for the antibodies and for strength, wisdom, and perseverance for you all - may He continue to be glorified!

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  6. Continuing to pray for your entire family!! Praying when your strength is diminished God will send someone to cross your path to encourage you and strengthen you.

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  7. You are doing a good job...faithfulness in the small things, are really big things.
    I am praying for the antibodies issue. Thanks for the updates!
    Rachel

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  8. You're a great mom, Katie. You bet...I'll pray about that.

    Kevin S.

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  9. Please be assured that your family has been very much in the prayers of people who love you all over the world!!! We are praying fervently for God's will to be done in Caleb's body...for his good and God's glory!! You and Daniel are doing a wonderful job of parenting...and you're right, it's the hardest job ever!!! Those of us who have grown children and grandchildren have to smile as we read your post because Jonah and Caleb are being very normal children and we can assure you, you will all survive these years and they will be fine young men!! So take courage dear one...you and Daniel, Jonah and Caleb are being lifted to the Throne of Grace hourly and God will give you strength, especially when you feel you can't go on! You are loved!!!

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  10. Aline Conatser SkelleyMay 7, 2013 at 8:13 AM

    Praying for Caleb and the rest of your family. It is hard somtimes when God's timing is the timing that we are looking for. It would be very hard to know what you are going through but I do want you to all know that I care about what you are going through and our Sunday School class prays for Caleb and your famiy on a regular basis.

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  11. I always read your post to check on your family and pray for you. I seem to always find myself blessed by your words. I have had this exact parenting feeling lately! You are so right this is the hardest job on the planet! I have found it doesn't get easier but I'm sure you agree, the blessings far outweigh these moments. it is the same no matter the age of the kids! Two of mine are teens and I remember feeling the same as you when they were 2 and 4 and now still feel it at 15 and 13 and one 6..makes me tired, lol.. As always your are in my prayers and thank you for sharing your experience.. you really are a blessing to others.

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  12. Extra prayers are going up to meet all your needs and for Caleb's blood work on Thurs. Jesus loves the little children, even when they are being little stinkers too

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  13. Katie,

    I'm a friend of Paige Fischer's, and every time I hear the song "I'm Worn" on the radio, I think of you and say a prayer.
    I think you could probably identify with most of the lyrics here (except for the dead inside part-- it's obvious you're not!). I especially like the refrain which includes these words: "Let me see redemption win ,Let me know the struggle ends,
    That You can mend a heart that's frail and torn." I'll be praying that all of the antibodies are gone and will continue to pray for your family. Here are all the lyrics to that song by Tenth Avenue North.

    I'M WORN

    I'm tired, I'm worn
    My heart is heavy
    From the work it takes
    To keep on breathing
    I've made mistakes
    I've let my hope fail
    My soul feels crushed
    By the weight of this world
    And I know that You can give me rest
    So I cry out with all that I have left

    Let me see redemption win
    Let me know the struggle ends
    That You can mend a heart that's frail and torn

    I wanna know a song can rise
    From the ashes of a broken life
    And all that's dead inside can be reborn
    ‘Cause I'm worn

    I know I need
    To lift my eyes up
    But I'm too weak
    Life just won't let up
    And I know that You can give me rest
    So I cry out with all that I have left

    I know I need
    To lift my eyes up
    But I'm too weak
    Life just won't let up
    And I know that You can give me rest
    So I cry out with all that I have left

    My prayers are wearing thin
    I'm worn
    Even before the day begins
    I'm worn
    I've lost my will to fight
    I'm worn
    So Heaven come and flood my eyes

    Let me see redemption win
    Let me know the struggle ends
    That You can mend a heart that's frail and torn

    I wanna know a song can rise
    From the ashes of a broken life
    And all that's dead inside can be reborn
    ‘Cause I'm worn

    Yes, all that's dead inside will be reborn
    Though, I'm worn
    I'm worn

    Lyrics from eLyrics.net

    Jennifer

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  14. Praying. Caleb and your family are on our prayer list at Spiceland Friends Church. He has a lot of people praying for him.

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  15. "Behind every great kid is a mom who's pretty sure she's screwing it up." A saying I heard just recently and I want to share with you! I continue to read your blog as we have a family friend in common and also the fact that my husband had a liver transplant three-and-a-half years ago. My boys were seven and three at the time and it was VERY difficult for me. Stay consistent, and (of course) give them all the love you can when you can! Know that I am praying for you too. I am praying for God's peace for you and your husband as well as understanding for your your boys even as they are being disciplined because that is important and necessary. It's tough love! Blessings to you!

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