Right now it feels like the Heart Center has a revolving door for kids that come and go and get their new hearts, and for some reason we just seem to keep going around and around while everyone else steps right outside. In the last week, two of our sweet friends, Katelyn and Uriel, got their new hearts and that makes four total children that got here after Caleb and got their hearts before him. When someone else gets The Call, so many emotions bombard me. First, of course I am so thrilled and excited and we are hugging and cheering and celebrating with them. And then I vicariously live through them for a while, imagining what it will be like when we finally get to call our family and friends and tell them the best news ever. But later, when that day is over and I'm laying in bed trying to go to sleep, I ache so badly for Caleb to get a new heart himself that it feels almost overwhelming. I get to the point of obsessing, as if I can make it happen if I just wish for it hard enough. Sometimes I just stare at my phone thinking, "Ring, PLEASE RING, just ring and be the news that OUR heart is coming."
Tomorrow will be six months that we've been here at Riley. The only way to survive this is to do the exact opposite of the kind of obsessing I just described. I have to put it out of my head, not think about whether today might be the day. Otherwise, I start to sink into a very bad place of constant disappointment, bordering on devastation. That's no way to live. It's getting harder and harder to stay away from that place. Sometimes I have to choose several times a day to focus on something else, to think about TODAY and not let my mind go there. It's not just getting harder for me, it's getting harder for all of us. Daniel is really behind with work and struggles to focus. He is always exhausted from staying up very late at night after we're all asleep trying to get tasks done. Jonah is getting harder to keep entertained and asks all the time if we can just go home for a few days. And when we do go home, he wants to stay there. But when he does leave, to stay with grandparents for a few days, it's harder for him to be here after being gone. So we try to keep him here, with some sense of normal routine, as much as possible. Fortunately he is still fairly easy to distract and we have to be purposeful every day to help him live in the confined space of Caleb's room.
Sometimes it seems like the person in this family who's handling this best is Caleb! He has no awareness of what is outside this hospital, unlike the rest of us, so he has nothing to desire beyond his day-to-day life. He plays with his toys, goes to music and art, takes walks, plays with his family. He is still a happy and secure little guy. And he's been very stable lately, with no changes to speak of. He keeps us all going, makes us laugh and keeps us focused on what we have to be thankful for. Yes, he's tethered to a pole and gets shots every day and the occasional picc line change, but he doesn't know any different. I wish I could drink some potion that would make me temporarily forget the outside world and I could join Caleb in his oblivion.
One day at a time. I have to think about the good things about today. My dad is coming this morning with my Aunt Karen, that's fun. Caleb has music group. I am going to eat a hot fudge sundae from McDonald's at some point. It's sunny outside and warm and we can go outside. This is how I have to live, get through today, focus on the things to be happy about and look forward to. Please pray we can keep going. Daniel and I are weary and starting to feel like we can't sustain this much longer. Please pray for our strength to be renewed by God; we know our own efforts don't work anymore and He has to give us strength that doesn't come from ourselves. Pray that He would provide for each of us what we need to keep going in this season of our life.