Friday, August 14, 2009

One Day At A Time

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.


  1. You guys are doing such a great job. And I'm so glad Kyle makes you put "nap" on the list. Now, you just need to work on crossing it off :). You're right, God is there. And he loves you, Kyle, and Collin. That doesn't negate the suffering, but I pray it does make it easier. We love you guys.

  2. Annie, though the circumstances were different, I have been where you are now. The good news is - it doesn't last forever. Eventually, all things run their course. The bad news is - we can seldom control their time frames. For some of us, not knowing how long a trial will last can be harder than understanding why we have to have the trial in the first place.

    Following is some scripture that was a comfort and road map out for me. I pray that it will be the same for you...

    Matthew 6:25-34; 7:7-11
    Philippians 4:13
    Romans 5:3-5

    Another thing that helped was making a list each day of things for which I was thankful. You were one of them! God is good!

    Bottom line... some days it's enough to survive. Get up, breathe, do what must be done, refuse to quit.

    Much love and many prayers continue to go out daily for Collin, Kyle, and yourself! They will not go unanswered.

  3. Today's sermon at our new church was a revisitation of David and Goliath... The teaching pastor asked us to reflect on what our Goliaths were, what it is that challenges us seemingly impossibly so. He reminded us that God had hand-picked David for the job, just as God has hand-picked us in His name. This classic battle of good versus evil reminded Andrew and I of the grace we are granted through Jesus Christ in all our battles, and we pray daily for you all and Collin's Goliath. As your dad said, we know the Kratzsches will come out victorious on the other side of this battle!