Thursday, October 19, 2006

Family and Friends

I can’t tell you what a blessing your comments are to Katy and her family!

While we were getting ready to leave the office and go to the hospital for a visit today, Dawn called and gave Julie brief update. Although it wasn’t good, we are learning that HPSer’s have good days and not as good days. Although Katy had a very scary afternoon, by the time we arrived at the hospital ten minutes later she was sitting up in bed and reading your comments. I won’t go into much detail but, this is part of the up and down of learning to control the pain and medications that Katy is on. Katy only weighs about eighty pounds right now, so a bit of medication goes a long way. This afternoon she had a severe reaction to one of her medications and actually stopped breathing. Her medical team reacted very quickly, revived her and corrected the situation and within a couple of hours she was doing much better. While we were there tonight she had a similar, but much less severe reaction to a much lower dosage of the same medication.

Please pray that her doctors will be able to find the right balance of treatment. HPS is not something the medical team here has ever experienced and they are doing their best in a difficult situation. It may not sound like it, but through all this a lot of learning is going on and progress is being made. By God’s grace, Paul and Dawn are bearing up well. Please keep praying for them. God is answering your prayers.

Now, I want to tell you about a special moment that happened tonight, and this is more important than everything preceding. Between the trauma of the afternoon and evening, Katy was given a printout of your comments. When we arrrived she was sitting up in bed reading each one out loud. Katy has a way of appreciating things. She savors them. She sees beauty that I usually don’t take the time to notice. I love that about her. So when she came to a comment that contained the words to a song, she wanted to sing it. And that is what happened. It turned into a beautiful trio; Katy, in her hospital bed, Dawn on one side and Julie on the other, singing this song (from an earlier comment by Trisha Ferris):

Be still my soul, the Lord is on thy side.
Bear patiently thy cross of grief or pain.
Leave to thy God to order and provide;
In every change, He faithful will remain.
Be still, my soul; thy best, thy heavenly Friend,
Through thorny ways, leads to a joyful end.

This is my prayer, O Lord of all the nations:
Your kingdom come on earth, Thy will be done.
Let Christ be lifted up till all will serve Him,
And hearts united learn to live as one.
O, hear my prayer, the God of all the nations;
Myself I give You, let Your will be done.

I had a few private moments with Katy tonight, and she said a couple of things that I would like to share with you. She would like you all to know how much she appreciates your prayers, and the time that you take to read and comment on her blog. But she also said that she hopes that you are somehow being blessed and growing through this experience with her. And that is her desire, to be “poured out like a drink offering” (Phillipians 2:17) for the glory of the heavenly Father.

  1. Gene & Shirley Murphy Says:


    I came to visit you in the hopes of being some kind of blessing, of being some kind of assistance. Instead, I recieved the blessing in having witnessed not only God’s grace and mercy extended to you from your family, friends, and caretakers, but also grace extended through you to me and, I’m sure, to all who come into your room. Thanks for being God’s divining rod of grace.

    We continue in prayer for you and your family.

    Love in Christ,

    Shirley sends her love.

  2. April Lang Says:

    Good Morning My Precious Sister,
    You continually amaze me and your love for and trust in our Lord is amazing!!! I love you! Wanted to wish you a wonderful day! I hope to see you soon!

    Praying for you,

    April :-)

  3. Jess Lankford Says:

    Katy -
    You are being poured out and others are being blessed - I can testify to that because I’m experiencing it. The Lord has brought so much more focus to my prayer life through your situation. You are constantly on my mind and therefore I’m constantly in prayer and going to Jesus on your behalf. Ernestly praying for someone is one of the most amazing things - I can feel God’s spirit surrounding this whole situation in a way that I’ve never felt before. I’ve also been able to tell some neighbors about you - people who don’t understand the kind of peace that you have. We were talking about when life is ‘hard’ and I shared a little of your story. I could see the disbelief when they heard about how you are singing with ulcers in your mouth - it really made them stop and wonder! :) Thank you for being a light in this dark world!

    Love you bunches!

  4. Carson Kistner Says:

    Hi, Katy,

    I am sorry that I did not get to spend the night with you last night. We’ll look at the scrapbooks after you get home.

    You are one tough pilgrim, dear one. I smiled at the effect you had on the group of medical people that swarmed into your room last night when you had your second reaction. One of them seemed to be lingering after she had finished her job. She kept saying, “You are so sweet,” and “All of you are so nice. I’d rather stay here than go see my other patients.”

    Paul instructed the Ephesians to live as “children of light.(5:8)” Thank you, Child of the Light, for letting Jesus shine through your pain so that the world can see the King of glory.

    His grace, peace, and love,

  5. Barbara Walker Says:


    You are such a precious girl! You are so strong too - strong in the Lord, in your mind and in your little body! Despite the setbacks, your body seems to recover and serve you well. I am so proud of you for having such a wonderful attitude.

    Virgil, Ashley and I are praying for you many times a day! We thank God that our God is a praying God and that we all can go to Him when a prayer time is needed! We are thanking Him for the progress you are making and asking for much for you and your family.

    Love in Christ,


  6. Sonia Says:

    I haven’t been able to check your blog in a few days and was very saddened by the events I have been reading. I pray the Lord’s blessings on you and your family right now. I pray God will give you much strength to endure this trial, that he will uphold you in His gentle hands and that you will continue to trust your parents in the decisions they are helping you to make. We all love you so very much! Take care sweetheart and know you are in our thoughts every day.
    Sonia (and the family)

  7. Heather Kirkwood Says:

    Good morning Katy girl! I hope today is going even better than yesterday. I was smiling to read about your singing. I sing to myself a lot (good thing I live alone eh?) because how can anyone possibly be down when you’re singing? Looking forward to hearing more good news.

  8. Laura Says:

    I haven’t left a comment in awhile, but I’ve been reading this everyday. I don’t know if you noticed, but a few of my friends from church have started to leave you comments, too. I have another song for you. It’s not a song with a lot of words like the song that’s described in your blog above, but I’m sure you still know it. I played it at your house when we were all around the campfire. Here goes:

    “I’m trading my sorrows/
    I’m trading my shame/ I’m layin’ them down/
    For the joy of the Lord! (at this part you wave your arms around in the air, goofy sunday school motions, but hey they’re fun)/
    I’m trading my sickness/
    I’m trading my pain/ I’m layin’ them down for the joy of the Lord/

    And we say Yes Lord, yes Lord, yes yes Lord/ Yes Lord, yes Lord, yes yes Lord/ Yes Lord, yes Lord, yes yes Lord Amen/

    I’m pressed but not crushed/
    Persecuted by not abandoned/
    Struck down but not destroyed/
    I am blessed beyond the curse for His promise will endure/
    His joy’s gonna be my strength/

    Though the sorrow my last for the night/
    His joy comes in the morning.”

    Have fun singing!
    I love you bunches of bananas!

    +Shine the Light+
    LAURA :) (yay cute smiley!)

  9. Adam Thompson Says:

    Hello Katy!

    I remember that you once mentioned that you didn’t get many comments on your blog (Xanga). Well, it appears that you have that problem no longer! :-D It sounds like you’re enjoying all the comments, too. ;-)

    Your mercy, O LORD, is in the heavens;
    Your faithfulness reaches to the clouds.
    Your righteousness is like the great mountains;
    Your judgments are a great deep;
    O LORD, You preserve man and beast.

    How precious is Your lovingkindness, O God!
    Therefore the children of men put their trust under the shadow of Your wings.
    They are abundantly satisfied with the fullness of Your house,
    And You give them drink from the river of Your pleasures.
    For with You is the fountain of life;
    In Your light we see light.

    Psalm 36:5-9

  10. Karen Tillman Says:

    Dear Katy,

    I just think you are so special, and I am sure that is why I am so drawn to your blog. I am so glad that you are getting better, and continue to pray that God give you strength as you are adjusting to this new found knowledge, and to the medications you are having to deal with. I know you will be better soon.
    Karen Tillman Regional Coordinator Mid Atlantic USA
    Hermansky-Pudlak Syndrome Network Inc
    NC phone:336 954 3604
    NY office 1.800.789.9477
    my website:

  11. Aleah Says:

    Katy, I’ve been keeping up by reading your blog. Everyone seems to say this but I must echo their thoughts because they are so true - you truly are an inspiration. I read about you, and turn to the Lord in prayer. Never has my prayer life been so strong!

    We are taught that our spiritual lives as a Christian community are all connected, but never have I understood that so clearly as seeing the impact you have on other people. God has blessed you, Katy, with a spirit strong enough to endure on and to keep telling the story of God’s grace and love for you.

    I pray for your family - I pray for you and your health - I pray for joy for you - I cannot imagine how difficult it is to remain joyful - I have some song lyrics for you too since it seems you enjoy those! May God give you rest and peace in Him and strength.
    Blessings to you!
    In love,

    “Blessed be Your name
    When the sun’s shining down on me
    When the world’s all as it should be
    Blessed be Your name

    Blessed be Your name
    On the road marked with suffering
    Though there’s pain in the offering
    Blessed be Your name”

  12. Sarah Meador Says:


    You are such a blessing to my heart. Every time I read your comments or things that you have said to those around you, it always brings a smile to my face and encouragement that fills my day. Your strength and joy are such an inspiration to me. God is using you in such a powerful way as He daily works His will in your life. You are a beautiful child of God and I am blessed beyond words to call you my sister in Christ and my friend. I praise God for you, and I pray for you daily. You are a treasure. I praise God at your ability and desire to shout from your heart that, “It is well with my soul!”

    I love you, dear friend,

  13. David and Lizi Says:

    Dear Katy,
    You are a real soldier for Christ. We are truly being blessed every day by your amazing witness to all of us.
    What a blessing it is to know you and your family. Really words can not express how I feel because it is so overwhelming. You are an inspiration to us.
    When you get better I want you to come to our store. We are having so much fun in this business. It is all about putting beautifull colours together! It is very tiring at times because not every one is easy to handle but the Lord is giving us a lot of grace to smile and go on! We have met a lot of nice people and it is fun helping people with their different projects.
    We hope you have a sweet and good nights sleep. Surely goodness and mercy shall follow me all the days of my life and I will dwell in the house of the Lord forever!
    Goodnight and sweet dreams little one.
    Love Lizi and David.XXXX

  14. Dawn Says:

    Dear Katy,

    Psa 143:5 I remember the days of old; I meditate on all thy works; I muse on the work of thy

    He lead you out of some terrible times in days past. He will do even more. Keep trusting. I heard daddy ask you out for a cup of tea when you are feeling better. THINK BIG! A cup of Tea in St. Augustine in January would be great!
    Love, Mom

  15. Martha Harrison Says:

    My dear Katy, I learned of your illness on Tues. of this week when I saw Elizabeth Harris in the grocery store. Also, Linda Womack is my good neighbor and friend who came by yesterday and told me all that you have been going through. I am praying fervently for you, and feel that God will heal you of this disease. You are a shining light for Jesus! You might not remember me, but we helped with Bible School together at Camp Jubilee one summer. Your mother has meant so much to me as a sister-in-Christ. May you continue to feel surrounded by God’s love, and my prayer is that He will heal you. Everyone who knows you loves you, and we need to keep you with us. The Bible verse that comes to mind that I would like to share with you tonight is from Romans 8:18 which I’m sure you are familiar with: “the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us” NKJV Katy, Jesus loves you so much, and so do I, Martha Harrison

  16. Bob Krome Says:


    I lead a small group in Nazereth, PA and your friend Laura is in it. Just wanted to let you know that we are praying for you. Laura fills us in on what is going on and we just find you to be such an inspiration. We will keep praying and we hope that you continue to improve.

    *Let Him be known to all nations*
    BOB Krome

  17. Heather Kirkwood Says:

    Just checking in on you again. I hope all is well. I get many inquiries about how you’re doing. Off to bed - still praying for you!

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