Not so much Joy for the Journey no. 4

Not so much Joy for the Journey no. 4

Made it through day 35! Thanks Uncle Curt Scott for your help tonight. Ian suffers from nausea and restless leg syndrome almost around the clock. We are weary with the wait and sometimes agitated with the discomfort…

These cannot be helped with any change of medication right now so we are left to other comfort measures. Essential oils, (thank you Elizabeth for the diffuser) massage, percussion, ice chips, ice packs, and prayer.

His legs feel like ants are climbing all over him with razerblade feet. The remedy; slapping his legs hard and fast! Or deep deep tissue massage all over his legs. Curt massaged Ian for a couple hours or more and left around midnight thinking Ian was sound asleep.

As soon as I said goodbye, Ian woke up asking for more. Finally we got the nurse in the beating and that was way more fun for me. We got a tricep work out for another hour till Ian fell asleep.

So many of you want to know how he is doing, how you can help, if you can visit. I want to post more, and answer all those questions, but I am often called away to get water, get the urinal, ice chips, or bucket, slap his legs or massage his back, etc. It seems the comfort of having my hands on him is good medicine right now until the heart comes. It’s a really sacred time to be so near someone’s pain.

I am amazed at the caliber of doctors and nurses. They are smart, kind, attentive and wise.

When I mentioned that to Ian, after he heard they cannot do anything to stop the nausea he felt defeated and discouraged. “but they didn’t help me.”

It takes wisdom to know when to say “no”. And it’s especially hard to hear it when we live in pain, in an instamatic, egocentric, pill popping, prolific world, with resources all around us. It’s another lesson in delaying gratification that we don’t have a choice about. They said “No” for several reasons:

1. the other organ numbers still look normal.

2. Ian had two offers for high risk hearts in the past week. Both had other things they didn’t like about the offer. But hat his name came up is encouraging.

3. The VAD is a very intrusive, aggressive option that has a load of complications of its own.

It took wisdom to say No even though Ian is suffering so much. We can trust our doctor’s decision to not be more aggressive right now.

So, we Americans who are into our comfort, used to controlling our world so much, and avoiding pain at all costs. But we have to learn to trust God for something. For us it’s relief from pain.  It’s trusting God for a new heart at the right time. It’s trusting God with Micah and Kaiya too.

For you it might be trusting Him for a new job, a mended relationship,   A happy marriage, a wayward child.  He may be giving you a “no” right now too. Will you choose to trust Him to make things happen, or will you take things into your own hands?  The truth is, “No” is always hard to hear. But we always have each other and the Lord to journey with. I’m so thankful we have you to do this with.   “Trust in the Lord with all our heart and lean not on our own understanding. In all our ways, acknowledge him, and he will make our paths straight.”

He woke up again….


18 thoughts on “Not so much Joy for the Journey no. 4

  1. Oh Jilly…you are so wise and so beautiful…thank you for encouraging all of us to trust the Lord even and especially when we don’t receive immediate relief from pain. God is using you to speak into all of our lives. Praying for you as you use your hands to lovingly slap Ian’s legs and bring him some measure of comfort.


    1. Thank you, Carolyn. God is good and I still like it right here with Ian. We don’t get to see how faithful, attentive, and enough God is until we get to the end of ourselves. Most of the times we can choose to trust God or take matters into our own hands cuz we think we have some control. But we must practice in baby steps every day to trust God with big and little things. Like you have chosen to trust him in your ministry choices. I don’t have much of a choice. I must trust Him because I can’t go buy Ian a heart. I can’t fix him. So I am learning to trust. I guess I do have a choice. I can worry and be ruled by fear or despair. Who wants that? I need Jesus and cry to him and he hears me and comforts me with the word.

      Thanks for your good love and prayers and for choosing to trust the Lord with your life too.


  2. Jill – thank you for posting truth and encouragement through this trial. I’m having my eight SCA students in Anatomy and Physiology follow your blog as well. They are learning a little about muscular dystrophy and hospital life, but mostly are gaining perspective like your post today and Ian’s mottos: “Everyone is dying, some read their Bibles.” On Tuesday, we prayed in class for you and Ian.

    You and your family are a blessing to me. Thank you for posting

    Michelle Estrick


  3. Querida hermana,
    I am praying for our Lord to continue to give you wisdom and patience as you lean and trust Him.
    I am begging the great physician, who has power over everything to provide a healthy heart. I am praying for our High Priest who is continually advocating on your behalf to give you the strength in your hands to provide Ian with the comfort that no pills can provide.

    Thank you for sharing your journey with all of us, thank you for the encouragement thru your own life.
    I know


  4. Thank you my friend and forever sister in Christ for the latest post, I am praying, “You keep him in perfect peace whose mind is stayed on you, because he trusts in you. Trust in the Lord forever, for the Lord God is an everlasting rock.”. Isaiah 26:3,4 love you all! kel and family


  5. We have been praying for Ian and the Rogers family. You are an example of righteous suffering.

    Our Lord provides! In His presence is fullness of Joy. Therefore, do not be anxious about tomorrow…. The poor will eat and be satisfied; those who seek the Lord will praise Him! May your hearts live forever!


  6. Hi Ian, Jill, Randy, Micah & Kaiya,
    I’ve been following your progress and hope and pray that you will all receive good news soon!
    Hang in there Ian!
    Love & a prayer,
    Uncle Michael, Auntie Betty & Yuki


  7. JillyBean, you are in my thoughts and prayers. How my heart aches for you as you strive to be strong. And for Ian as he waits in such discomfort. You are walking through the vale of tears.
    I am encouraged that together we can cling to the promises of our faithful Father and provident Lord, who though I can hardly comprehend your sufferings, has endured so much more for the sake of your eternal comfort and glory.
    I wish I could be there to give you a big hug right now. Know that I am praying for you today. Sending you love.


  8. Thank your honestly seeking and sharing your hope in Christ. You are a faithful wife, mom, and child of God. Randy is a godly man, devoted husband, and loving father. We are praying for the right heart to come along.


  9. Jill,
    We are praying everyday for Ian and for your family. Your honest words bring us close to your journey and allow us to walk this road with you. Thank you for that honor. I appreciate the truth revealed in both your writings. Our Heavenly Father knows your words even before you speak it. We trust and pray fervently for the right heart to come to Ian. May His strength give you what you need moment by moment. Your family is loved by so many. We have a card signed by the choir class….I will get it to Ian soon. Precious sister, the sacrifice of your love, your obedience speaks a resounding testimony to us all. God’s glory and majesty fill Ian’s room!

    ~Tracey D.


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