It was going to happen eventually, and I'm just happy we had six great months before Caleb was back in the hospital. Last Wednesday, Caleb had his fourth (or was it his fifth?) biopsy and heart cath since his transplant. And on Thursday, we got the first unfavorable report we've gotten in all that time. Our doctor called us and explained that because of Caleb's recent illness (he had a cold that became a raging ear infection and he was incredibly sick for days), his immune system was out of whack. They wanted us to bring him in right away for a 3-day hospital stay that included two rounds of a treatment called IVIG. Fortunately, there was still no sign of rejection, but it didn't stop me from feeling like I was back on shaky ground. When we got off the phone with the doctor, after being told Caleb needed to arrive the next morning, Daniel said, rather poignantly, "You know how people shove their dogs' faces in their own poop when they poop on the floor? I feel like someone is shoving my face in a reality I want to pretend isn't there." Well... that's one way to put it. We laughed, but in all seriousness, I felt my confidence start to crumble. We scrambled to make plans... what were we going to do with Lucy? Jonah? Who was going to stay at the hospital with Caleb, and what plans did we need to move around for this unexpected trip? All things considered, we pieced together a good evening with our kids and went to bed with a, "Alright, let's do this, whatever 'this' is going to be" mindset.
It was very bizarre to check back into the Heart Center. We had quite a welcome, lots of people coming to hug us and say, "I'm so sorry you're here, but it's so good to see you!" It wasn't that bad at all, other than when Caleb had to get an IV and it took FOUR tries, poor guy. He was understandably super upset, but then when each attempt was over, after just a few minutes, he was right back to his happy self. What a kid.
We did our thing and moved into the room. The boys would ride the cars around the hallways, with Caleb attached to his pole again, and it would have felt like deja vu, except that we've added a baby to the mix. Lucy was a champ, she would take naps in Caleb's room and allow us to pass her around. We made it work, with a healthy dose of fun and optimism, just like we always do. I decided to stay in Caleb's room, Daniel took the other two kids back to the RMH to sleep at the end of each night, and things went pretty smoothly.
But... I couldn't keep this nagging thought out of my mind... it's always going to be like this. We will always have hospital stays and we will always be uncertain about Caleb's wellbeing and future. We will always have to watch our son try to be brave for procedures and pokes. It might be months and months of being able to almost forget about reality, but we will be faced with it again at some point. I just kept thinking, let's get out of here and get some good news and go back to Caleb being fine and life being good.
Then on the second night, Caleb got sick. He woke up crying of a headache and vomited in his bed... a lot. And he puked on his IV dressing, so we had to change that, and his bedding and everything. He had a fever. And when I called Daniel to tell him, very unfortunately he said he had just gotten sick. So he had to stay away, just in case they happened to have different things. We didn't even know if Caleb could finish his treatment or what. It was such a LONG night. He was scared, and upset and just wanted me to hold him. He just kept saying, "I want to go home, Mommy", and I didn't know what to say because I had no idea what the doctor was going to say about this. And so we spent the whole night, just the two of us, snuggling in his little hospital crib with him whimpering off and on. And I had a lot of time to just lay there and think. TOO much time to lay there and think, because as I sat there in the dark and quiet room, the old pain of coping with Caleb's heart crept back in.
I thought about how we were missing Easter weekend entirely. How Lucy wasn't going to get to wear her cute little First Easter dress, and we weren't going to be able to go to church or hunt eggs or any of it. And that old feeling of being robbed came rushing back, that feeling that other people are out there, living their carefree lives, waking up and taking pictures of their families all dressed up, kids eating their Easter candy and enjoying a gorgeous, sunny weekend. And we are in a hospital room. We are stuck in this hospital room, yes, but more than that, we are stuck with this life of having a "sick" child. I tried to sleep, to push these feelings away, but I couldn't. I just laid there in the dark, all night long and well into the next day, as Caleb just wanted to sleep and keep the lights off.
The transplant team, when we called them in the morning, were actually not concerned about Caleb's symptoms. Turns out, the treatment can make people sick, and more susceptible to viruses. They finished the treatment and Caleb seemed to feel better by the afternoon. We were discharged around 5:30 pm. On the way home, I asked Caleb what he wanted to do when we got home, and he said he just wanted to take a bath. So he did, and went to bed. It was so good to see Jonah and Lucy, I had missed them so much even though it had only been a day since I'd seen them. Hospital time is just so much slower than regular time. Poor Daniel was still sick and spent the evening in bed, and it may have been the most exhausted I've ever been, coming back from that hospital stay, on no sleep, jumping right into being a mom of three needy kiddos. But we survived, and by Monday, everyone was feeling much better.
Now we go back on Tuesday for blood work, to see if the treatment did what the doctor hoped it would. The team was confident that it was effective, and that will be that. I haven't been worried, I trust them and assume the next bit of news will be a good report. Still, my bubble was burst a little, and this experience brought up a lot of old feelings that I had just not had in months. It's like coming down off a high and having to face something I would rather pretend isn't there. But you know what, now that I've had a few days to process this, I don't think it was entirely bad. Of course, we all want to avoid thinking about painful things, and we want our lives to be happy and easy. But that isn't real life. There is a lot of hurt in this world, and I don't want to close my eyes and pretend it's not there. I want to embrace this life, all the pain and all the joy right next to each other, with my eyes wide open. This recent hospital stay was like a shock to my system, but a good shock, because I feel like this season of my life, these six months of resting and recovering, is coming to an end. It's time to start listening to God, and making myself available to Him for stuff OUTSIDE of this house. I have been through a crazy journey in the last couple years that has given me wisdom and strength that needs to be shared. For the last six months, we have hunkered down, focused on healing and adjusting to our new normal. Now, I feel like God is saying, "Alright, now it's time for more new things." I don't know what that means at all, but I know that I am ready to listen to what He wants me to do with my time and energy.
I'm listening, Lord. My heart is sensitive to you, to your leading. I am ready to see what it is you've been preparing me for all this time, through all this suffering. I know that you have lots of purpose for the things you've brought me through, and I'm open to wherever you would lead me.
Friday, April 4, 2014
As I sat down to write my first blog post in a couple months, I thought, "What is there to update about? Things seem like they have been pretty uneventful..." That is, until I started looking at some pictures. Then I realized I need to catch you up! Here's a highlight reel from the last few months...
On January 27, Caleb turned three. His birthday was celebrated with Batman cupcakes and more than a few happy tears from Mommy... you can't blame me, considering that there was a time I didn't know if Caleb would ever have another birthday.
In February, our family was invited to a New Castle boys varsity basketball game because the team and coach wanted to honor Caleb with an award, on behalf of the community, for outstanding courage and strength. Caleb got to ham it up as the crowd cheered for him.
In March, our family was invited back to the Ronald McDonald House for an event for their board of directors and donors. The event featured Caleb's story and Dr. Jeff Sperring, the President and CEO of Riley was a guest speaker, along with yours truly. We got to stay all night in our old apartment and my boys thought it was a vacation. The RMH staff treated us like we were coming home for a reunion and it was great to see them all again, and great to stay in what still feels like our second home. We had a special surprise when Dr. Mark Rodefeld, the surgeon who performed Caleb's heart transplant, came to the event. It was really special to see him again, and I know it was special to him to hold Caleb in his arms, knowing the part he played in Caleb's amazing story.
On March 27, Caleb was officially SIX months post-transplant. As that date approached, and flu season ended, and Caleb continued to do so incredibly well, we began to let him venture out in the world more. We have just gone back to church and Caleb joined his little Puggles class, which he absolutely loves. The first time I dropped him off at his class, I couldn't believe we'd arrived at a point in our life where he could join in with what other kids were doing. We also have taken him to the Children's Museum, both the one in Indy and the one in Muncie. Watching him run and play and simply wander around with wide eyes will never get old to me... I hope he always approaches new experiences with the kind of enthusiasm he has nowadays.
And mostly we have just been enjoying normal life. Day after day of just being a family, together, in our home. Healthy... happy. As winter is finally giving way to spring, our life isn't starting to feel routine. Instead, there is a growing excitement for the amazing experiences that are ahead. And by "amazing", I mean things like playing in the dirt and going to the park, watching fireworks from someplace other than a hospital rooftop, and anticipating our first vacation as a family of 5 (the beach in May... YAY!).
These six months since Caleb got a heart transplant and we have returned home have been a very quiet season for me. And I've been trying to enjoy and savor it, even when it has seemed boring at times. I'm aware that another new season is about to begin. Our seclusion is over and God is stirring in my heart that new things are around the corner. I've been invited to speak at a few events (mostly churches, although speaking at the RMH event was a blast) in the next couple months, and I have discovered a growing passion to share my heart with others. I hope more opportunities to do that come my way.
So much to look forward to... I wish time would slow down. My babies are getting too big too fast. Jonah has his first loose tooth and starts kindergarden this fall. Caleb is in the "I'll do it myself!" phase and not only wants to dress himself, but has strong opinions about which super hero jammies he's putting on each night. Then there's my baby girl... Lucy rolled over today for the first time. Sigh. All this stuff, this normal life stuff, this is what I waited for all those months. I still can't believe this is my life.