The second (or is this the third) stage of waiting is over… we have a date for surgery. July 31st, unless we get a cancellation before that. Now, the final stage of waiting can begin, though I think this is the worst part of it all. The knowing, the dark cloud on the horizon that you know has thunder and lightning hiding in the puffy darkness and it’s just waiting for you to look up so it will pour down on you. It sounds dire, it’s not as dire as it sounds… I guess I am just feeling introspective about it today.
The reality is that it gives Josh a small amount of summer to enjoy the beach, to play with his brother, to NOT attend school or therapy sessions or appointments. It’s a good thing really (if that can be said of something like this?).
My main concern now is Josh. He’s getting more and more tired, more and more frustrated with his limitations and though we didn’t talk about his heart all weekend he came out from school today frustrated because he was tired and not feeling, in a frustrated voice he asked me when his heart will be fixed. I have changed the word broken to special, but I can’t seem find a way to explain why his special heart needs to be ‘fixed’? I say things like ‘you will always have a special heart but we want to help you find more energy…’ but it doesn’t satisfy him. He mentioned again that God is sleeping, we had a long talk about it today on the grass mid-way between school and home (he can no longer make the whole distance , about 1.5 blocks, without a break in the middle). I told him that God never sleeps, that’s he’s always with us, and he said he would rather he be with Kaleb, not him. So I said that God can be anywhere and everywhere… he asked ‘is there two God’s?’ I had to smile. It’s not easy to understand this whole God thing is it? Not even for me and I’m an adult! While his questions cause me angst and worry I also realize that he’s expressing some deep and complex thoughts, and this past September he couldn’t tell me how his day had gone. His language is ever improving and for that I am so infinitely grateful. I just wish I was better able to answer his tougher questions, and ease his worried little brain.
So, while I realize that July 31st is not that far away, that it gives him a chance at some summer fun, and gets him well enough to attend school on time in September… there is a part of me that wishes that we could do this tomorrow, to have it all behind us and be allowed to move on.
I am still collecting the RED photos (#redforjosh) and will be accepting them until July 1st. At that point I will make the collage and get it printed up before we head north for a couple of weeks of beach time. Please, if you are interested in sending in a red photo for Josh (see the post Will you? for details) send them to firstname.lastname@example.org. Don’t forget to share this with those you know who are praying so that they can be a part of this huge show of support for Josh. He knows and understands that people are praying, and now, when he sees anyone wearing Red he asks me if that person is praying for him too. It’s been a real encouragement to us and our family but it’s also showing Josh how much he’s loved, and that people are praying. It’s also been a great way for me to explain that with all those voices praying to God, there is no way God would sleep through it. He, we, have been amazed by the response. Thank you. (As I mentioned, I will post the final product here on the blog for all to see).
|One of the many pictures that have come in so far|