The days are long but the years are... also long. Wow, waiting is a really hard place to be sometimes. It's getting harder and harder to muster up some joy and energy. I know the right things to say when people ask me how I'm doing. And I really don't want to bum people out by telling them that I just don't want to be here right now, that I really just want to be home enjoying my Christmas tree and watching Christmas movies like everyone else. I miss being a family together. Jonah's feeling it too. When we prayed together before bed the last night he was here, which was last Thursday, he said, "I just want to pray that Caleb gets better so we can all go home." I hear ya, buddy, don't we all.
On the positive side, we've been here so long that I'm pretty sure Caleb either doesn't remember our home or just doesn't think about it anymore. He has stopped asking to "go bye-bye" and has just accepted that this is where we live. I realize that's a good thing because at least he is content and not sad about being in the hospital. He has become amazingly accepting of all the things doctors and nurses do to him... he even will mimic what the doctors do by trying to do the same thing to his stuffed dog, Artie. When the nurse gives Caleb medicine, Caleb gives Artie medicine. When the nurse cleans Caleb's dressing on his arm where his PICC line is, Caleb wants an alcohol wipe too so he can clean Artie's arm. It's pretty stinking cute. I'm thankful he is accepting his reality better than his mommy is right now.
We have no idea when Caleb might get a heart. It could be today, it could be in March. Please, God, don't let it be in March. Or if we're going to be here until then, help me be strong! I joined a facebook page for heart transplant families and one of the moms told me yesterday to remember that these days are not days for waiting, they're days for living. I guess that's what you can pray for me right now.
Prayer requests:
1- Pray for us to have perseverance. Pray for us to be strong and steady and endure these days with patience.
2- Pray for us to be disciplined to spend time with God, to look to Him to fill us up when we are depleted.
3- Pray for a heart to come soon!
Love to you all!
Katie... I will pray for all of those things for you & especially that you are able to "be present" & enjoy each day with that precious boy... that you may live each one FULLY... and that the days of waiting will truly be days of living for you all!
ReplyDeletePrayers for you. Even though Eli is not waiting for a new heart, he will be having a few valve transplants throughout his life. The waiting will be the hardest for me. Trying to make each day full of life.
ReplyDeleteEli is having elective surgery on Monday for a GU issue. He developed a fever over the weekend which has broke, but now he is coughing up stuff. Hopefully this will resolve in the next day or two so we can keep him on-you know how touchy they are about heart kids and being sick and having surgery--which is good. However, if they postpone it, it means more waiting. I guess my point it that even though it is on the opposite side of the spectrum right now, I understand where you are coming from.
I will be praying for you to stay strong and look to God. He understands our hearts and He is with us even at our darkest moments. Love and hugs to you!!
Romans 5:3-6
ReplyDeleteNew International Version (NIV)
3 Not only so, but we[a] also glory in our sufferings, because we know that suffering produces perseverance; 4 perseverance, character; and character, hope. 5 And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.
Dear Katie & Dan~ Just a verse that filled my heart and helped me many times when I cried out for the will to persevere. The part I hang on to is that God's love has been poured into our hearts~His love overflows for you and your precious family. I pray for all your needs to be met and that you feel the love being poured into your hearts and we wait for Caleb's new one! Love you All!! Miss Pam
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ReplyDeleteKatie and Dan - praying that the God of ALL comfort will give the strength to hope, trust and persevere. (2 Corinthians 1:3-4) I was praying for you in a group of HC pastors the other day and we prayed John 15:7 "If you remain in me and my words remain in you, ask whatever you wish, and it will be given you." We asked God to give Caleb LIFE and to give your family the peace that surpasses understanding. When we asked God for a response to our prayer for Caleb... God spoke to our hearts and said, "I win!"
ReplyDeleteI know that God's timing is often difficult. But take heart because you are in good company and can one day discuss your trials with Abraham and Sarah, Job, Joseph and even Jesus.
You are winning!! - Tisha Sledd
Katie we are praying for you and all the request you have on hear...I believe God will give you the peace you need as you wait on a new heart for Caleb. Philippians 4:7 and the peace of God which supasses all understanding will guard your hearts and minds through Christ Jesus. Donna Richardson
ReplyDeleteKatie, Dan and Jonah,
ReplyDeleteWe continue to lift your family up before God; praying for God's will through this experience. Specifically, we are praying that God will strengthen Caleb's heart to be able to endure surgery to repair his own heart without the need of a transplant. If the transplant is in God's plan, then we are also praying for the other family that will have to make a very difficult decision and a very traumatic time in their life.
We will lift up your specific requests this week during worship. Hold strong to the courage that comes from God.
Be blessed and be a blessing!
Pastor Mark Parkinson