This morning, when Joseph told the reporter that Shwachman-Diamond Syndrome didn't affect his life, I was shocked. I know they have as normal a life as is possible with chronic illness, but I never expected him to say, "It doesn't," in response to the question, "How does Shwachman-Diamond Syndrome affect your life?" We've worked hard to ensure they have a "normal" childhood, so hearing him say this brought joy to my heart. It also brought tears my eyes.
I know it affects his life-- he tells me about it often. What was beautiful about this morning is that in that ONE instant, that ONE moment, the overall perception of his life came out in those words. It doesn't affect his life in the sense that he is able to enjoy all the normal activities of childhood. We adapt and overcome and find ways to make normal childhood activities possible.
I've been thinking about it a lot today. Friends who have heard the boys say this sort of thing always say, "Oh, it is because you and Chris are such great parents," or something a lot like that. I have to remind people that it is ALL God. Not me, not Chris, but God. If you stepped into our chaotic lives for a moment, you'd see that it really is God who does all of these things. Sure, Chris and I play a part, but God takes over and makes up for what we are lacking.
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