How Parenting a Child with Menkes Changed All My Expectations

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Once we learned my son Lucas’ diagnosis of http://themenkesfoundation.org/, all our expectations went out the window. It was devastating. But it was also liberating. We had to learn that any disappointment we felt was due to comparing our new reality with our imagined future. It was never hard to see him as the wonderful, shining boy who was full of joy and laughter. What took a bit of work was changing our mindset away from the wonders (or terrors) of the future to the happiness in the here and now.

Lucas has given us special permission. Permission to live for the moment. What we had was Lucas and each other and later his younger brother. In any given moment, that alone was precious. Lucas showed it to us. Not just with his bright, gleaming eyes. Not just with his ear-to-ear grins and deep chuckling laughter. Despite his limitations in communicating, he’d actually take us down a peg or two when we got off the path.

More at

http://themighty.com/2015/01/how-parenting-a-dying-child-changed-all-my-expectations/