Update 15 - Under Pressure

Today was a great day. Not what we were expecting. 


I felt pressure to make a decision today. I felt uneasy. The car ride to the hospital was quiet. Our playlist played and we didn’t talk much. It was weird. 


Half way through the trip I looked at Carly and said:


“We have to be okay with this decision. Please don’t feel any pressure from me to make any final decision today. We should continue to take each step and make one decision at a time. Today we have decided for you to see River in person. 


I’m going to spend a few minutes with the doctor to make sure we have the best information. We know medical care can not save her. She is stable and the nurses have assured us that River is not in pain. Her dopamine levels are stable. Their goal is her comfort. She isn’t improving, but isn’t getting worse either. 


However, we are still missing a few pieces of the emotional puzzle. If we need a few more days with River. I think that’s okay.”


When we arrived, I asked the doctor for advice. I explained that we know the path we are on and where it ends. We just don’t know how long the road is and how fast we need to go. I know we can’t deal with all the stages of grief before we come to a decision. That’s okay. I don’t think we are ready, but I am concerned we might be taking up critical space and preventing some other child from getting the best care possible. 


He assured me that we must not consider space. They have space. He comforted me and explained that  he knows this decision is hard. He said, “you must have closure. Today is a step toward closure, but doesn’t have to be the last. You need peace before you decide anything. 


I thought, “I need peace like a River”


After the conversation I realized that I was the one fabricating the pressure to make a decision. 


With the burden lifted, at least temporarily, we were able to enjoy the day. Our anxiety was gone. We didn’t feel rushed and really enjoyed our time as a family. 


We both held her, and talked to her about as many things as we could. We sang to her. We cried, and we laughed. It was a good day. 


Thanks for sharing the highs and lows with us today. You guys are awesome. Your show of support today will forever stick out as one of the best moments of our lives.


We have been on a rollercoaster for a week now. Because of our openness you have too.

Comments

  1. April CarterJuly 13, 2020 at 7:59 PM

    Aww Kenny and Carly, I feel for y’all! I know y’all have some tough decisions ahead, I have walked the path with some families. It is not an easy one. From your updates, I feel like your medical team has been very honest. I will be praying for y’all!! Pray that you hear a clear voice from the Lord!! Love y’all!

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  2. Melissa PhillipsJuly 13, 2020 at 8:18 PM

    I’m just going to keep praying hard for your little family. Know that people you don’t even know care for you all.

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  3. Devon UJuly 13, 2020 at 8:39 PM

    I have thought about y’all all day. Praying for peace in your hearts ��

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  4. Jackie CoxJuly 14, 2020 at 12:22 AM

    I think of y’all constantly. I pray for your hearts. I pray for River and the medical team. I pray that you continue to feel God’s loving arms around you both. I pray He gives you renewed strength and encouragement in the upcoming days. Know that He has walked with you the whole way, and will never leave your side.

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  5. Jackie bradshawJuly 14, 2020 at 1:58 AM

    You all are in my thoughts and prayers! I know this is so hard on you both and everyone in your family. Know that God is with you and that he is already holding you in his arms. Continuing to pray for you and your family. God bless you all. ❤️❤️❤️

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  6. SarahJuly 14, 2020 at 2:27 AM

    Praying for all of you. ❤️
    Sarah Milliner

    ReplyDelete
  7. Kayde McCainJuly 14, 2020 at 4:18 AM

    Continued prayers for you on this journey. I cannot imagine but do know we serve a Mighty God and pray for his guidance for all of you during this time.🙏🏻❤️

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  8. Beryl RichardsJuly 14, 2020 at 4:55 AM

    My heart is breaking for ya'll, Praying.

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  9. C BeckJuly 14, 2020 at 6:02 AM

    Praying for you all for now and also when she crosses into the Promised Land. Connie Susko

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  10. UnknownJuly 14, 2020 at 6:40 AM

    I just can't get your family off my mind. Like many others, I am praying many times a day. God knows your heart and will walk you through this!!

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  11. BarbalotJuly 14, 2020 at 6:59 AM

    May God be with you and hold you close to Him. My heart aches for all you are going through. River's sweet little life has already touched many. Praying continually for your peace and wisdom.

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  12. Sandy RumphJuly 14, 2020 at 9:09 AM

    Kenny and Carly, my prayer is that you feel Gods presence surrounding you. You have been entrusted with these precious moments with River...a blessing...to treasure for the rest of your lives. I know that God will continue to surround and uphold you during this time. I know He will give you the peace and the grace to know exactly what and when decisions need to be made. For this moment, fall into the arms of Jesus as He cradles and loves on your precious family. Always in my prayers....Love you ❤️

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  13. lalazzJuly 14, 2020 at 11:35 AM

    Well, my heart did a happy dance when I saw "today was a great day." I'm just gonna call it "Miracle: Part I." I have to confess something. Yesterday, I was laying down at 12:30, and I was having a conversation with God. (I don't know a lot of formal prayers, but me and the big guy have a great relationship, and we talk all the time.) So we were talking. Well, I was doing most of the talking and not listening to well. The next thing I know, I woke up at 1:47. My heart sank, and my eyes started watering. I had meant to pray the hardest at 1:00, hoping that, if nothing else, y'all would feel my love and strength. I'm just happy that God gave y'all some good time with your precious River, and that it was a beautiful experience. My point is that we are hardest on ourselves. I guess it's just human nature. With all of the undo pressures that we all tend to put on ourselves and in different situations, it's pretty clear that God knows best. Maybe that is the real meaning of keeping faith. I don't believe that God is responsible for the horrible, awful, really bad things that can happen in our lives, but I completely believe that He is there to help us navigate through them. You know how much all of us love our children? There is absolutely nothing that we won't do for them. That is how all of us are to God--we are all his children. It's so easy for me to put things in His hands, and equally as easy for me to try and take it all back with worry and confusion. The real secret is to put things there and leave it. Jesus, take the wheel and mean it.

    I'm praying for all of you. You are continually in my thoughts. I really hope that you are feeling all of the love from me and everyone else on these pages, and that you are finding comfort in it. It is abundant! You are so loved! I hope you are having another great day. <3

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  14. UnknownJuly 14, 2020 at 12:19 PM

    Continued prayers for all of you. Thankful for a good day of peace and sweet time with precious River. We are praying peace and strength over ALL of you during this time. Thank you for the many updates and allowing us to peek through the window of your storm. We are with you in prayer and with heavy hearts. Love and prayers from the Carson family ❤️

    ReplyDelete

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