We have been home for over a week now. It's amazing to me how quickly time goes by here, and how slowly time moved while we were in the hospital. Recovery has been challenging at times. I can't pick Caleb up under his arms, I can't lay him on his stomach, can't put him in his exersaucer. He is waging a war against his medications. Fighting a 7-month old to take his medicine is becoming an aerobic exercise for me. And he now has to take medicine 4 times a day, probably for the next year of his life. I don't think he's in pain any more, but his chest is very sensitive to any amount of pressure. I'm so ready for him to get back to his full range of motion!
On the plus side, last night we FINALLY had a breakthrough with sleep. He only got up twice. I will take that over being up all night long, any day. And he's eating normally and gaining weight again. He's gained about half a pound or so since we left the hospital. If you came into our house, you would never know what he's gone through; unless he has his shirt off, in which case he looks like Frankenstein. Otherwise, Caleb is smiley, happy, cooing and practicing his "Ma-ma's" and "Da-da's" all day long.
We went back to the hospital for a check-up on Monday. His oxygen level is higher than ever, and overall everyone was very pleased with him. Dr. Kumar kept saying how great he looked. That is so good to hear! The only downside came after they did an echocardiogram. Apparently Caleb's overall heart function is pretty weak right now. His little heart isn't pumping with the strength it should. Hopefully, the doctor says, it's just a temporary reaction to his recent surgery. He prescribed another medicine and said hopefully with time and drugs Caleb's heart will get stronger.
At first, this news didn't bother me. Up until that moment, everything had been glowingly positive. But on the drive home it began to eat at me. Why couldn't we just leave it at "He looks great"? The dark little cloud made its way back in just when I thought it was going to be gone for a while. The reality is, that little cloud will never be gone. I read somewhere that grief is like always carrying a brick in your pocket. Some days you don't notice it at all, but it's always there. Having a son with half a heart is that way. Sometimes I can coast along on some good news, but sooner or later I realize the weight that's been there all along.
There is something I've been reading over and over lately. It's in the Bible, from the book of Jeremiah and it says this: "Blessed are those who trust in the Lord and have made the Lord their hope and confidence. They are like trees planted along a riverbank, with roots that reach deep into the water. Such trees are not bothered by the heat or worried by long months of drought. Their leaves stay green and they go right on producing delicious fruit." I've thought about this picture of a tree next to a river so much lately. That tree doesn't depend on the fickle weather, or the rain that may or may not come. That tree doesn't need the rain, which is temporary, to keep growing and thriving because the river provides everything it needs. In the same way, I can't depend on my circumstances to keep me going. My confidence is not in a good doctor's report, or in my family's happiness, or in everything going ok in my life. Those things are just temporary, like the rain. My confidence is in my God, who is not temporary but permanent and enduring. If I am the tree, he is the river, the one who gives me life and joy and peace. I can't put my hope in anything, or anyone, else. If I am deeply rooted in God, the droughts of this life won't ruin me because He will keep supplying me with what I need to grow. Lord, remind me of this picture when I notice the brick in my pocket. Remind me that you are everything I need and that you will give me roots that reach deep into you; roots that will keep me from being blown over by the pain that this world brings. I pray that my friends and family will put their hope in you too. God, I will not forget to thank you for what you've already done. You have walked with me in the darkest and brightest moments in my life! I love you now more than ever, Lord, and I will trust you no matter what.