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Is there a downside?

Rare Disease

Since Case was diagnosed, I felt compelled to find the bright side.

That is not to say that I was happy and optimistic all the time – it is of course a process … to process. But, if you live in a cloud of “what ifs” and gloomy prognoses, there is so little left of you to enjoy the child that is still with you.

I was reminded by wiser MPS mothers at the beginning of this journey that Case did not change. He was the same the day before he was diagnosed as he was the day after. His outlook, his love for his family, and funny antics did not disappear in one day. Wise, wise women.

But in some ways, MPS actually made him…better. His full red lips, chubby cheeks, fat little hands, funny run, hugs that choke you, and innocent laughter all come from MPS.

His lack of understanding that the world contains cruel people who do cruel things makes him sweeter. His lack of understanding that I, his own mother, have done cruel things, humbles me incredibly.

It is that lack of understanding, that innocence, that I love in many ways.

If my understanding of the Bible is correct, it is that lack of accountability that will bring him before the Lord into heaven. I would love more concrete insight on this, so feel free to comment.

But when Case qualified for the clinical trial, I foresaw the possibilities. I once reasoned that Case was like Adam and Eve in the garden in some ways – pure in love for their maker and without knowledge of good and evil. But then I thought – might we then be responsible for bringing Case out of that innocent perspective and causing him to bite the apple, as it were? Will he someday understand good and evil and thereby risk the assured salvation I thought he had in his innocence?

These were heavy thoughts then, even in a theoretical possibility.

But heavier now in actuality.

Case has shown some knowledge of evil. He has begun to show shame at bad behavior. He has shown deceit by hiding to do something he was told not to do.

He is still a wonderful child, an incredibly innocent child in perspective. But I see the progression, and some days, I can’t say that there isn’t some sadness in me at this “loss.”

I have had to give it up to the Lord. It is not my actions that will bring him to a knowledge of his maker, of good and evil. Only God can make this medicine work or not. I am incredibly thankful that it may save his physical and mental life from the decline that was his prognosis, but whether or not it does, I am reminded that my focus is, as it is with my other boys, on his eternal salvation of his spirit.

Last modified: May 17, 2016

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