I always thought that staying in the present was useless, new age advice that sounds wise but means nothing. I think that's a reasonable take on it until staying in the present becomes a matter of sanity and even survival. When you're dealing with something as terrifying and bewildering as Infantile Spasms (and whatever it's underlying cause turns out to be), there's really no other viable option. At the beginning, we tried to live minute to minute. Now, I would say we're able to live more day to day.
So, we get up in the morning and go look at Collin as soon as possible to keep our minds from straying off into the future or falling off a cliff into scary possibilities. It may sound simple or lame, but I light a good smelling candle and play music to set the tone for myself and use my senses against my brain to stay in the here and now. I make a massive list in the morning (thanks for the great idea, Shelly) of all the things I need to do for Collin that day, one or two things I have to do around the house, and at least one thing I enjoy. (This is to keep Kyle from harassing me to death. He also makes me put 'nap' on the list everyday, though I'm not very good at following through on that one.) This gives me something tangible to work on because most of the things I do with Collin don't yield any visible results. He doesn't suddenly hold up his head after physical therapy (that's him in his lycra swing in the picture) and can't focus on anything even though we do vision therapy. But when I do those things and cross them off the list, they suddenly have an outcome I can see. We also keep a record of every tiny thing Collin does that looks or even feels like development. At first, I thought this was kind of like cheating - that we were trying to convince ourselves that he was progressing. But now I realize that his development is going to be at a very different rate from other babies and that it is important for us to celebrate his successes everyday. Yesterday, for example, I noticed him touching his G-tube button over and over again. He would take his hand away, then bring it back and touch the button with his fingers. I called Kyle in and we watched with rapt amazement and then I wrote it down on his chart.
That takes care of my actual activities during the day and even a lot of my thought processes, but it's still a struggle. And I would be lying if I said that I don't go round and round with God on this. My friend Heather recently asked me how this experience has affected my relationship with God and I answered that, like most things recently, it's paradoxical. On the one hand, I am clinging to him for dear life and I know that the growth and richness that has already come of all this is his gift. But at the same time, I can't wrap my mind around Collin's continual suffering and I don't mind telling Him so. I feel like, 'Where the heck are you?'
And I guess the answer to that question is, "Here." Now. Today.