There are days it's obvious I'm in a "who cares anyway" kind of mood. If you were observing me this morning, you would have seen me wake up, decide to just put on yoga pants instead of take a shower and get dressed, eat chocolate chip cookies for breakfast, and forget to brush my teeth before I headed over to the hospital. Yes, today is a day I don't have much motivation.
I've been a little blue for the last couple days, ever since Jonah and I were home for a night. See, I was doing some organizing at our house, because I realized that we can move all of Jonah's things home, in light of how much time he'll be spending there when preschool starts next week. (It will be really weird to NOT pack a bag for Jonah to go home, but for him to actually pack a bag to go to the hospital instead.) Anyways, so I opened the drawers in the dresser in the boys' room, and the first two drawers had almost nothing in them, just a few things leftover from last year that never made it to the RMH. When I got to the third drawer, I opened it and it almost took my breath away... it was all of Caleb's clothes, perfectly folded and untouched, exactly the way we left them when we left for the hospital on the morning of November 1, 2012. His little jeans, sweatshirts, button-up shirts. I just started crying as I lifted them up and looked at them, the clothes that are now so small, clothes he was just starting to wear last year as the weather was cooling off. In the hospital, Caleb wears the same handful of comfy outfits and jammies, all short sleeves because of his picc line, clothes that we don't mind if he pukes on, which he does almost every day. So all his old "regular" clothes were just sitting there, untouched. It felt like a death had happened, and all over again I felt like I was mourning; not mourning because I've lost my child, but mourning how much of his life has been lost to the hospital. Mourning the "normal" life I had dreamed of and hoped for him. Mourning all the things Caleb can't do and places he can't go.
As I sat and cried with all these little clothes in my hands and lap, Jonah came in. He immediately came over and put his hand on my lap and asked, "What is it, Mommy?" And I told him, "These are all of Caleb's clothes that he didn't get to wear, and I'm sad because I just want him to be able to be here with us and do normal things with us." And Jonah kissed me and said, "Well, you could just bring the clothes back with you to the hospital." And that made me laugh, and then Jonah said he needed to get back in his rocket ship and he skipped off. I am so thankful that he brings me a lot of laughter in moments that would be so heavy.
I have been a little sad since then. I just want Caleb to be able to be WITH us. It didn't help that when I got back to the hospital yesterday, Caleb and I were chatting and he said to me, "I want to go to YOUR house." I started crying again. I tried to explain that MY house is actually HIS house, but he looked really confused and said, "No, I want to go to YOUR house" again. And he asked me where my house is. It broke my heart. Even though the truth is that my house IS his house, it's easy to understand why that makes no sense to him because he's never even seen that house. He's never ridden in our van. He doesn't know what I mean when I talk about his play room or his bunk bed. And that has been hard lately. It's wonderful that he is stable and he truly is happy and secure in his environment here in the hospital... in fact, he was scheduled to go down to get an echo today, and when we told him we were going to get an echo, he started cheering. He is happy here. But he's not with us. He's not really a part of our world. We enter and exit his world every day, but he doesn't know anything about what we do away from him. And that makes my heart heavy.
I have had an idea in my head that I think I really want to see happen.... I would love to have a Pray for Caleb rally. A night where people come to pray for Caleb and for us and also to worship together, praising God for who He is and what's He's done, and coming before Him to plead for Caleb as well. Would people attend something like that? What an encouragement for us that would be. If you would be interested in coming to pray with us on Caleb's behalf, or would be willing to help with the event in some way, would you let me know? My email address is firstname.lastname@example.org. If there are people would do this, I want to see it happen.
Thank you for your wonderful prayers and encouragement. Even though we often feel far away, we know how much love and care there is for our family, and we appreciate it so deeply. Keep praying! And give me some feedback about a Pray for Caleb night.