Some people might have already seen these pictures on facebook, but I couldn't help posting them again. This so perfectly captures my boys. If you have spent any time at all on the Heart Center at Riley, you have certainly spotted a couple miniature superheroes who roam the hallways with various capes and masks every day. I love these two people more than I can even describe and if I ever start to feel sorry for them for the life that they have, I can look at these pictures and realize they're doing just fine.
This past week was a pretty good one, nothing very exciting to report, which is just fine with us. Boring is always better than eventful, because "eventful" usually means there's something to worry about. There was absolutely nothing to worry about this week, which is pretty miraculous. I don't know if people realize how big of a deal it is that Caleb is so stable. All of our doctors have said that if they had been told 9 months ago when we arrived that Caleb would first of all still be ALIVE, and second, be so stable and growing and doing well at this point, they wouldn't have believed it. The picture below shows what Caleb looked like the week we arrived at this hospital, the week his heart stopped and it took 4 minutes of chest compressions to get him back....
I barely recognize that skinny kid from last year! Considering he has congestive heart failure, it's AMAZING that he has survived and thrived since arriving here last November. People say to me all the time that they don't understand why God hasn't answered our prayers and why Caleb still hasn't received a new heart... but we know that God HAS answered our prayers, because He has sustained this little boy and kept his heart beating, and even given Caleb a spirit of JOY while he lives and grows up in a hospital. He is such a fun kid to be around. This week, his favorite game was pretending we were in a boat. He asked me one day if we could make a boat, so I used some little kiddie chairs and floor mats and we sat inside the little structure that was our new boat. Caleb sat down right beside me, hip to hip, and looked up with a grin on his face and whispered, "We're hiding, Mommy". I whispered back, "Who are we hiding from?" And he said, "We're hiding from hyenas. Hyenas are coming." Obviously he is somewhat of a genius because if you ask me, a boat is a perfect place to hide from hyenas. So yeah, boring weeks are pretty miraculous and it is plain that God has indeed been right here with us. And now that formerly sick-looking kid looks like this:
We would appreciate your prayers as we get ready to adjust to a new schedule. Jonah will be starting pre-school in a couple weeks and Daniel and I have decided to start spending more time at home in order for Jonah to start to have some kind of normalcy again. I will take Jonah home for Monday and Tuesday, Daniel will be home with him on Wednesday and Thursday and then we will spend the weekends at the hospital all together. This minimizes the amount of time our kids have to be away from each of their parents, but means being away from each OTHER a lot more. Honestly, Daniel and I have been really fortunate to not have to spend more time apart than we have. We chose in the beginning to make every decision we could to keep our family together instead of one of us at home with Jonah and one at Riley with Caleb. And now we're going to try something different and just see how it goes. After this long, I am excited to give Jonah the opportunity to be back in the real world more often. But we need prayers for perseverance as we adjust to more time apart all around.
I have missed blogging lately; as I've taken less time for media and entertainment, I have just been on the computer so little. But I realize that so much is happening in my head and in my heart (if not in this hospital room) that I want to share. So I will try again to be a more consistent writer. Thank you for continuing to be a part of our life, thanks for following along and praying for us. I am really excited about the next blog I plan to share. Stay tuned for what I promise will be at least mostly coherent ramblings about some stuff I'm learning about being a good friend and neighbor. And I plan to include a picture of me and my preggo belly so you can see how much Lucy is taking over my body... yep, baby girl's name is Lucy and she is making me huge. (I think Caleb and I should have a competition to see who can put on the most body fat in the next three months. I hope he wins.) Talk to you soon!