The Way We Are

There is lots of discussion on a short-gut email list that I'm on right now about just how awful life with sbs kids are, for both the parent and the child. These are mommies who love their children with all their hearts and are just overwhelmed with the care that they require. I must admit that we've had those days when we are overwhelmed and scared and worried, but in all things we try very hard to remember what we set out to do - make every day that John has the very best that it can be, no matter how many or how few days there are, and no matter whether we are spending those days like now where he is well and at home doing great or whether we are spending those days with him sick and in the hospital. I will always remember what the pastor who cared for us while we were with John in New Orleans told us. His words of comfort and of encouragement helping us to remember that we are not going through this just for John or for us, but that we are to remember those around us wherever we are and that they need our care too, and the Word of Christ that we have to share with them. Now religion is not easily discussed or brought up on the short-gut email list, but these words from Big Bird seem appropriate ...

"So maybe when we think about it, what's really best by far, is finding out what's good about being the way we are." That is our goal for John, despite all birth defects, physical handicaps, medical fragility or whatever happens or comes along we hope to each day teach him to accept who he is and be happy inside.