We have the first full week of our new schedule under our belts, and it was made especially interesting when both Jonah and Daniel got very bad chest colds. Fortunately Jonah made it to his first day of school, but Daniel couldn't go to Caleb's room for a few days and that made this week a doozy. When we finally all got back together on Thursday night (the first time the four of us were together since last Sunday), it felt like such a relief to have all my family under one roof, even if that roof is the roof of a tiny hospital room. The week went pretty well! Caleb seemed to do fine with each of our absences, Jonah absolutely LOVES preschool, and we survived going back and forth. I think this will be manageable. It actually felt nice to go home a little longer than usual, but going home always comes with a small sense of melancholy; it never feels quite right to be there when Caleb can't be there too. I kept myself busy, trying to make some semblance of a nursery for baby Lucy out of one of the spare rooms that had just become a catch-all for leftover boxes and junk from the move. We have "lived" in our new house for 6 months, but we have only slept there about 20 times, so we're still settling in. I tell myself I have some time to get Lucy's room together.... and besides, winning the award for Martha Stewart's Most Amazing Nursery is just not on my list of things I care about right now.
Last week we had some interesting meetings with our doctors. We kept this mostly to ourselves until the decision was final... but for a couple weeks our team was exploring the idea of us taking Caleb home to wait until he gets a new heart. I know, you're probably thinking the same thing I thought when this idea was first forming... I thought it would be amazing. I really respect our team here at Riley; they are truly trying to do everything they can for our family and for Caleb and they did a lot of work just to make going home an option for us. Unfortunately, as the picture became clearer of what that would entail, we knew it was not the right decision, and Caleb was not strong enough to do this. Long story short, it couldn't happen. I had known it was never definite, so it didn't devastate me to know we weren't going home yet. Plus it gave me a lot of peace that Daniel and I were totally on the same page, and our team was relieved when we said "thanks, but no thanks". Still... I had just started to daydream about actually being in our house, and it has taken me a little time to get over that disappointment.
Since then, a sense of resignation has been in my heart, and not a good resignation. Even though I know this isn't true, it felt like that was some kind of last-ditch effort and now we have nothing to hope for. When we were still in the process of seeing if Caleb could go home, I had searched for some other moms who have taken their children home while waiting for a heart. I am in a facebook group for moms of heart transplant kids, and I posed some questions and got some great responses. I actually found a mom whose son waited for a new heart for 18 months and another mom whose son waited 27 months, both of them mostly from their homes. At first that information encouraged me... it was like, OK, there are other families out there who have waited that long and still got a heart, we can do this! But the more I thought about it, the more I felt like, holy crap, that's going to be us. We're going to be one of "those" families who wait some ridiculously long time. I feel like we're going to be here for a year.... or 2 years... or forever.... Daniel has pointed out to me, many times, that just because SOMEONE, SOMEWHERE in the US has waited that long doesn't mean Caleb will, and I know in my head that is true. But right now my mind is struggling to overcome the feeling that the end of our time in the hospital is nowhere in sight.
While I'm sitting here typing this, I just heard Jonah happily tell Caleb, "Someday, Caleb, when you get better, you're going to get to go to the REAL fireworks on July 4th. And maybe you'll even get to let some off." I am so thankful for Jonah's presence, he is always so optimistic and cheerful as he talks to Caleb about the outside world. I think the Pray for Caleb rally is coming at a good time. My hope needs to be renewed. I need to believe that my son is going to get better. I need to remember, in my heart and not just in my head, that God has a plan for Caleb and He promises that plan is good.
I look up from this computer and see the boys playing and I long for them to be free to run and play outside together and for Caleb to get to see all the things Jonah tells him about. And I realize that they are really happy little boys, who love their lives and don't feel like they're missing out on anything. Today they played Batman on the floor and wrestled with Daddy and watched a movie and slipped in a couple of unprompted hugs. And I know it's just me that feels like I'm missing out. Perseverance! I need perseverance. I think I will focus my prayers on that, and ask God to help me not lose hope. And I'll be encouraged to know that in just a couple weeks, I will be surrounded by many people who love and pray for my family, and I'm excited about that. Hope I see you there! And thanks for your prayers this week; those prayers carry us through each day and help me keep my head up!
Also, could I trouble you for a specific prayer request for Caleb today? Caleb has his first cold in the entire time we've been in this hospital (10 months today!). It doesn't seem to be as bad as what Jonah and Daniel had, but he has a cough and runny nose. Please pray that he does NOT get a fever or get anything worse than what he already has- if he gets very sick, he'll have to go off the transplant list for a few days. Pray for Caleb to get better quickly!