Tuesday, April 30, 2013

One day at a time

Right now it feels like the Heart Center has a revolving door for kids that come and go and get their new hearts, and for some reason we just seem to keep going around and around while everyone else steps right outside.  In the last week, two of our sweet friends, Katelyn and Uriel, got their new hearts and that makes four total children that got here after Caleb and got their hearts before him.  When someone else gets The Call, so many emotions bombard me.  First, of course I am so thrilled and excited and we are hugging and cheering and celebrating with them.  And then I vicariously live through them for a while, imagining what it will be like when we finally get to call our family and friends and tell them the best news ever.  But later, when that day is over and I'm laying in bed trying to go to sleep, I ache so badly for Caleb to get a new heart himself that it feels almost overwhelming.  I get to the point of obsessing, as if I can make it happen if I just wish for it hard enough.  Sometimes I just stare at my phone thinking, "Ring, PLEASE RING, just ring and be the news that OUR heart is coming."  

Tomorrow will be six months that we've been here at Riley.  The only way to survive this is to do the exact opposite of the kind of obsessing I just described.  I have to put it out of my head, not think about whether today might be the day.  Otherwise, I start to sink into a very bad place of constant disappointment, bordering on devastation.  That's no way to live.  It's getting harder and harder to stay away from that place.  Sometimes I have to choose several times a day to focus on something else, to think about TODAY and not let my mind go there.  It's not just getting harder for me, it's getting harder for all of us.  Daniel is really behind with work and struggles to focus.  He is always exhausted from staying up very late at night after we're all asleep trying to get tasks done.  Jonah is getting harder to keep entertained and asks all the time if we can just go home for a few days.  And when we do go home, he wants to stay there.  But when he does leave, to stay with grandparents for a few days, it's harder for him to be here after being gone.  So we try to keep him here, with some sense of normal routine, as much as possible.  Fortunately he is still fairly easy to distract and we have to be purposeful every day to help him live in the confined space of Caleb's room.

Sometimes it seems like the person in this family who's handling this best is Caleb!  He has no awareness of what is outside this hospital, unlike the rest of us, so he has nothing to desire beyond his day-to-day life.  He plays with his toys, goes to music and art, takes walks, plays with his family.  He is still a happy and secure little guy.  And he's been very stable lately, with no changes to speak of.  He keeps us all going, makes us laugh and keeps us focused on what we have to be thankful for.  Yes, he's tethered to a pole and gets shots every day and the occasional picc line change, but he doesn't know any different.  I wish I could drink some potion that would make me temporarily forget the outside world and I could join Caleb in his oblivion.  

One day at a time.  I have to think about the good things about today.  My dad is coming this morning with my Aunt Karen, that's fun.  Caleb has music group.  I am going to eat a hot fudge sundae from McDonald's at some point.  It's sunny outside and warm and we can go outside.  This is how I have to live, get through today, focus on the things to be happy about and look forward to.  Please pray we can keep going.  Daniel and I are weary and starting to feel like we can't sustain this much longer.   Please pray for our strength to be renewed by God; we know our own efforts don't work anymore and He has to give us strength that doesn't come from ourselves.  Pray that He would provide for each of us what we need to keep going in this season of our life.


  1. Sweet Katie, I pray right now for God's peace and strength to surround you all. May you enjoy this beautiful day outside and the "little things" we may take for granted. May God touch your troubled heart and give you a renewed sense of energy and hope each day.
    I pray, that you as well, get that CALL soon and you can begin your life outside the hospital. Oh how we will all celebrate that day !!!
    God Bless you all Katie.
    With Much Love......Tracy Klotz

  2. OH, Katie, my heart aches for you and Dan! It makes my issues seem very unimportant in comparison. I, like you, take one day at a time. I have to stay away from the 'what ifs', God knows every fiber of your body, your thinking, so just continue to lean on Him and let Him be in charge. He understands. He is our rock! You are such an inspiration to me and to many, many others. It isn't easy. Just hang in there and know that there are many prayers lifed up for you and yours. Judith Conley

  3. Katie,
    I'm praying that God sustains you today. That His ability to be ENOUGH would surround you and comfort you. God is being glorified through you and Dan, this blog, and your struggles. Keep going, friend! You are surrounded by friends from all over the world - all cheering you on and aching with you, and praying that your wait will be over soon!

  4. Katie and family,
    We want you to know that Sandusky United Methodist Church has you on their prayer list and members lift you up by name daily.None of them know you but do know God's amazing power. May all of you continue in that strength.

    Randy and Elaine Stewart,

  5. Katie, I am praying for you. I tried to find a way to email you this morning as I felt compelled to give a link from my blog to your blog. I hope you are ok that I did it without your permission.

    Today these verses came to my mind for you.
    Psalm 16 9-11 NIV
    Therefore my heart is glad, and my tongue rejoices; my body will also rest secure, because you will not abandon me to the realm of the dead. Nor will You let your faithful one see decay. You make known to me the path of life, you will fill me with joy in your presence, with eternal pleasures at your right hand.

    May you feel HIS peace and presence today.

  6. My prayer today Katie~Love, Miss Pam

    Isaiah 40:28-31

    New International Version (NIV)

    28 Do you not know?
    Have you not heard?
    The Lord is the everlasting God,
    the Creator of the ends of the earth.
    He will not grow tired or weary,
    and his understanding no one can fathom.
    29 He gives strength to the weary
    and increases the power of the weak.
    30 Even youths grow tired and weary,
    and young men stumble and fall;
    31 but those who hope in the Lord
    will renew their strength.
    They will soar on wings like eagles;
    they will run and not grow weary,
    they will walk and not be faint.

  7. Know that we are praying for you always!

  8. I will keep you and your family in my thoughts and prayers.

  9. you are a family of faith. when I read your blogs I gain so much strengh. I see that I have been so blessed by your words and faith. I pray for your family everyday and know that God is watching over all of you. I have been through alot of hard times the last two years myself but what you and your family are going makes my problems seem so small. God is good all the time and is using you and Caleb to show all of us to just trust in the Lord with all our hearts and good things will come to all.
    GOD bless you and your family

  10. I pray it is Caleb's turn soon Katie! I know YOU know after last weekend, all the people who turned out to help with the Benefit at Montgomery's plus thousands more are praying for your family. May each prayer comfort you and give you strength and may each minute spent waiting give you peace and comfort knowing that GOD is in control. I love you all and pray for you constantly!!! <3

  11. praying continuously for your family.....

  12. We continue to pray for you and Daniel and Jonah as you wait for this heart for Caleb. He is in my mind as I awaken each morning. Many times throughout the day, I think of you all and pray for you. I know that God has used you and Daniel and many of your family/friends to minister to families over there. God is in control and in His timing, Caleb will get his heart OR God will heal the one he has. What a testimony there is going to be! God is faithful & I thank Him for providing for you and Daniel the strength you need for today and all the tomorrows...one day at a time. God is Good! We love you & are praying for you.

  13. Prayers for you and your family to have renewed strength.