It blows my mind that it was a week ago right now that I was filling out paperwork to admit Caleb to the hospital for a heart cath... it feels like a month has passed. The days are inching along and at times I feel like I'm going to lose my mind in this hospital. I knew I would have good days and bad days (or good hours and bad hours). On Tuesday night I started to feel like the walls were closing in on me and I couldn't possibly imagine doing this for an indefinite amount of time. And I started thinking about how even if a new heart comes, there's no guarantee his body won't reject it. And the fears and worries and depressing thoughts started to build and build into an oppressive weight on my shoulders. But yesterday people started praying for me, and I felt a peace with me throughout the day and by the evening the oppressive weight was lifted and we had a great night.
Caleb is doing really well. It is OBVIOUS the grace of God is on him. He is laughing, playing, a happy little guy. The nurses think he's adorable. And they are correct. There is such a huge improvement in his mood and of course that makes me relax. We have moved up to the Heart Center and this is where he'll be until he gets a heart. We had some great news yesterday... Medicaid is going to cover the transplant! His condition qualifies him as "disabled" and the Riley people worked their magic and got Medicaid to speed things up. Caleb should be able to be officially on the transplant list very soon.
We also had another great moment this morning... the Transplant Coordinator, Debbie, whom we now meet with a lot, talked to another couple whose son, Logan, is Caleb's age and just received a heart transplant in May. They were here today for a checkup and Debbie asked them if they would meet with us. It was wonderful. Their names are Justin and Holly and their kids are the same age as ours. Their little guy, Logan was amazing; he was running around the room, looked so strong and healthy and it made my heart swell with hopefulness that Caleb can have that energy someday too. Holly told me how before his transplant, Logan was tired and weak and never able to run or climb... just like Caleb. Within days, he had more energy than he'd ever had and now he looks like a normal little 2-year-old. Meeting them was so encouraging and I'm looking forward to getting to know them better.
Today is a day where it's just so apparent that people are praying for me. Your prayers keep me from being afraid and weary. God keeps giving me strength and endurance even when darkness tries to creep in and steal my joy. Keep the prayers coming- they really do make a difference in our life.
Prayer Requests for Today:
1- Pray that the listing process moves quickly and that Caleb can get on the transplant list right away
2- Pray for us to not get discouraged and lose hope
3- Pray for Jonah to feel secure even though his little life is so disrupted right now. Pray for us to find time to connect with him.
I'm wearing my Pray for Caleb bracelet proudly today and thinking of all the amazing friends who are supporting us and praying for us. We love you all! And thanks John Dugan for the great bracelet!