Friday, March 21, 2014

Google Syndrome

The day Mason was born, our first google search was “CHARGE Syndrome”. And so it began...the long pursuit of finding out more about Mason, with the goal of finding ways to help him however we could. Search query after search query, we press on. If we should ever reach the end of the internet, we’ll begin again. What are we doing, exactly? You know, the usual: * Poring over MRI images of people’s brains and comparing them to Mason’s MRIs. * Reading medical abstracts and looking up terms that we didn’t know existed. * Learning about syndrome after syndrome, trying to find ways that kids with medical conditions similar to Mason have been helped. * Looking up genes, by name, and finding out what they do, what other genes they interact with, and how they are inherited. A child without a diagnosis is enough to turn this computer guy and his writer wife into full scale medical researchers. If we were examined by doctors they would note some "dysmorphology" in us -- the droopy, bloods-shot eyes with dark circles underneath, the numb fingers from typing well into the night, the sore heads from beating them against the wall: yep, that's right; Google syndrome.

We love our undiagnosed little man. If we never have a diagnosis for Mason, nothing changes. We love our son and he is a blessing to our lives. We want to be a blessing to him too - by praying for him, caring for him, interacting with him, advocating for him, helping him progress, and doing what we can to find ideas to bring him better health and comfort. We don't feel that God determined Mason's birth to be in the information age for no reason; He knew it would be brought to bear /used for benefit in his life. If God chooses and eventually we end up with a diagnosis, our prayer is that whatever the diagnosis is, we’ll be able to find ways to help him live a healthier and happier life to bring glory to His Creator even in greater ways than he already does. And if we never know, our prayer is the same.  

--Mason's Dad

Mason's Mix

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