Saturday, August 15, 2009

Gratefulness in the Midst of Grief

It's been another fairly uneventful day, and we are thankful for that. Samuel has been pretty stable for the last day or so. He had some irreguar heartbeats this morning, but they have stopped. They weaned him just a tiny bit on the oscillator, and he continues to get a small amount of breastmilk on a constant drip. When we called at 3 am last night, he had just had a poor blood gas result, and Bryan and I spent an anxious 15 minutes waiting for the nurse to call us back with another test. Thankfully the next test was much better.

This morning Mom came to the hospital and spent a few hours at Samuel's side while Bryan and I spent some time with Caleb and Joel. We had "Pancake Saturday Morning" like usual, and Bryan was grateful the boys requested easy shapes -- a "Z" for Caleb and a "pop-pop" (lollipop) for Joel. We played with the boys and tried to get some quality time with them. After lunch, our friend Libby picked them up to go to a birthday party. Caleb didn't want to go -- he wanted to stay with us. But both boys had a grand time at the party, and Bryan and I headed to Egleston for the rest of the day.

One of our favorite nurses was on today and caring for Samuel. I was asking him about Samuel's pulmonary hypertension, and he told me that on rounds this morning, the doctors were taking about the likelihood of a child having both a heart defect and primary pulmonary hypertension. Apparently 1 in 50,000 live births has a heart defect, and 1 in 50,000 live births has primary pulmonary hypertension. According to nurse Richard, that means 1 in 2.5 million babies (though Bryan thinks it is 1 in 2.5 billion) are born with a heart defect AND primary pulmonary hypertension. That doesn't even take into account the coronary fistulae which the doctors have never seen in an infant or his hemangioma (we haven't mentioned this most recent theory yet) which they have never seen on a heart. Yet again we see the uniqueness of Samuel! Everyone here comments on how Samuel likes to do things differently -- different treatments, different results, different diagnoses, etc. He's one of a kind, for sure.

Bryan's two bosses and special mentors, Bill Willits and John Woodall, came to the hospital today to pray over Samuel. It was comforting to have someone stand over Samuel's bedside with us and see a glimpse of our days and our precious boy. It was great to have them pray with hands on our little one. It lifted our burden a little today and made Bryan and I both think of Galations 6:2, "Carry each other's burdens and in this way you will fulfill the law of Christ." We saw that in action today.

Today also marks the 17th anniversary of Bryan's mom's death. His memories of that day are more tangible as we sit by the bedside of our sick son. As we reflect on death and life, we find our faith being stretched and our hearts heavy. I was telling Bryan this morning that God is asking a new kind of faith of me. In my story, my heartbreak and woundedness has all been from people's choices, and though I can't understand what motivated them to make those choices, I can understand sin and how God's gift of free will can result in pain and suffering. This time, however, there has been no sin, no betrayal, no human choice involved. God simply made Samuel this way, and though God could have made him differently and could even now heal him, so far God has chosen to give Samuel this sick heart and these sick lungs. It's requiring me to trust God in a new way -- to trust that He is good even now and even in these circumstances, even in this design of Samuel. God is growing and stretching my faith for sure.

One other nice thing about today was something I think I can thank nurse Richard for. I broke down crying to Richard earlier in the day while Bryan was walking John and Bill out, and I had a splitting headache this afternoon. Richard noticed my less than stellar status, and this evening a woman came over to our area and asked to borrow me for 20 minutes. She said she needed to give me a neck and shoulder massage! It was the most restful 20 minutes of the last week for sure. Apparently it's her fulltime job to give massages to parents in the hospital. What a wonderful thing it was to be cared for in that way and so unexpectedly.

We're about to head home for the night. It's easier to leave our sweetie when things are steady and he's looking well. We're crazy about this child. In the midst of all this trial and heartbreak, I am repeatedly struck by how much I have to be thankful for. I spend my days beside a son I love, I walk this road with a husband who loves me and our family and who points us heavenward every day, I have my mom at home taking better care of Caleb and Joel than I could at this time, and I know my God as we travel down a road I wouldn't wish on anyone in the world. I often look around me at the hospital and hurt for the other parents with sick kids. How many of them don't know the peace that passes understanding? How many are walking without the love of a spouse? How many are lacking the firm foundation of Christ under their feet? Though I would never have chosen this road, I find much to thank God for as we journey down it. I pray I continue to remember His goodness regardless of what is ahead.


  1. Kathryn, you amaze me. You are a wonderful mom and an amazing woman. Thank you for sharing the updates with us so that we can pray very specifically for you, Bryan, the boys, and sweet Samuel. I read your words and find myself learning about my emotions with respect to Isabella and her seizures - thank you for that. We love you guys and continue to pray for you all.

  2. Kathryn, what a brilliant example you are of true faith! This is a testing for sure. I can't wait to hear about Samuel's reaction when he is old enough to read this blog and understand the magnitude of the love that you and Bryan have for him; of the love that our God has for him. His love is showing up in small ways for you right now - a friend to pray with, a blanket to cover Samuel, and an unexpected massage at just the right time! I pray they sustain you. I pray the very Spirit of God would wrap around you like your own prayer blanket.
    The email went out today for the meal calendar. Me thinks you will be eating well pretty soon!
    Much love to you both.

  3. B & K,
    You know I am often in bed by this hour but I can't sleep. I am remembering what I saw and felt as I saw your little Samuel all hooked up to so many heart broke. It took the power of God to keep me from balling my eyes out in the moment. We loved being with you three today even though in the valley of the shadow of death. I sensed the Lord and His Presence and His Peace. We do not cease to pray for God's will to be done on this little heart and soul and body of sweet Samuel. We love you soooo much and are thinking of you.
    John & Debbie. Romans 8.26-27.

  4. Kat,
    That's a beautiful testimony to God and his work in your life. Through tears, I'm thanking God for you, for Samuel, and for the story he's writing in this.

  5. Bryan and Kathryn,
    What a beautiful baby boy you watch and pray over every day! I am praying for him and his doctors and ya'll daily. This morning, that God's peace will guard your hearts and minds in Christ Jesus. That you will know the Lord's presence with you and Samuel; that you will have His strength. And, of course, for Samuel's healing.
    Amy and Scott Reed

  6. Dear Bryan and Kathryn,
    You two are amazing examples of what it means to be followers, servants, and all trusting of our Lord and Savior. Baby Samuel is so blessed to have such loving and faithful parents, as you are to have such an amazing and unique little baby boy! We are praying for precious Samuel, Caleb, Joel, your family, and you both diligently. Thank you so very much with keeping us updated and being so transparent and detailed in Samuel's progress. I know it has to be so difficult to put your feelings into words, but you both are doing such an amazing job. Please let us know if there is ANYTHING we can do to help. You are heavy on our hearts.

    Love, hugs, and prayers,

    Seth and Gena Stang

  7. B & K,

    Up this morning praying for you and I came across these truths from
    Eccl. 3:1. I hope you take the TIME in this season to grieve and mourn and cry as you need to...there is a season for everything. Joy will its perfect time. In His time, He makes all things beautiful.

    There is a time for everything, and a season for every activity under heaven: 2 a time to be born and a time to die, a time to plant and a time to uproot, 3 a time to kill and a time to heal, a time to tear down and a time to build, 4 a time to weep and a time to laugh, a time to mourn and a time to dance, 5 a time to scatter stones and a time to gather them, a time to embrace and a time to refrain, 6 a time to search and a time to give up, a time to keep and a time to throw away, 7 a time to tear and a time to mend, a time to be silent and a time to speak, 8 a time to love and a time to hate, a time for war and a time for peace.

    Praying for you in these intense times.


  8. Hi Kathryn,
    I like this nurse Richard and hope he makes more neck and shoulder rubs available for you.

    Love and prayers,

  9. Hi Crinkle (Kathryn's still hard to say), :)

    Just wanted you to know that I'm praying for you and have been each day. I'm praying for God to hold and encourage you and your husband and for his healing touch on Samuel. I just pray that you will sense his presence with you throughout your days in the CICU and again when you leave and have to go home.


  10. Dear Bryan and Kathryn,

    I don't know where to start...two years ago our family was at Egleston and one of our wonderful nurses was Richard. Our son Elijah David was recovering from open heart surgery and we were living moment by moment on our faith and prayers from our friends and family....constantly checking our blog and reading everyone's comments. Our website was like oxygen at times...getting us through each moment. Our family will be praying for Samuel and all of you. We have walked through this place where you are now. We are available for anything. We cannot wait to meet Samuel and your entire family. Please call if we can do anything.
    Rusty and Rebecca Reed 678-557-8802,, and our website

  11. Rebecca's correct email is

  12. Kathryn and Bryan, I love reading your thoughts and updates. You put into words so beautifully what you are going through. We can get a glimpse of sharing in your day's roller coaster ride. Hope you feel the love from us reading your words. I am daydreaming of the day that I can hold Samuel. Kathryn, Your thoughts today reminded me of one of my favorite quotes from R.C. Sproul:
    "When you can't trace God's hand, trust His heart."
    Thank you for reminding all of us that even when circumstances scream something different we know God is Good and Loving.
    Love you guys, Colleen

  13. Bryan and Kathryn:

    I continue to be moved by your faithfulness and devotion to your heavenly Father throughout all of this. I am so touched by how aware you are of others' difficulty and the love you show to those around you. I am praying, with big faith, that God will help Samuel gain the strength to grow into the shining examples of Christ that you two continue to be. I love you both!

    In His love;