Parenting a Dying Child

When we had a child on the way, we said we were expecting. What we expected was a healthy, happy, “normal” baby. When our child was born, we never really stopped expecting. We expected him to crawl, walk, talk, do well in school, get a good job, find a nice spouse, bring us grandchildren, perhaps care for us as we age.

Once we learned my son Lucas’ diagnosis of Menkes syndrome, all those 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.

When we had a child on the way, we said we were expecting. What we expected was a healthy, happy, “normal” baby. When our child was born, we never really stopped expecting. We expected him to crawl, walk, talk, do well in school, get a good job, find a nice spouse, bring us grandchildren, perhaps care for us as we age.

Once we learned my son Lucas’ diagnosis of Menkes syndrome, all those 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.

Dane Wilson has forwarded a link to a blog post, How Parenting a Dying Child Changed All My Expectations by his friend, Daniel DeFabio.

"When we had a child on the way, we said we were expecting. What we expected was a healthy, happy, “normal” baby. When our child was born, we never really stopped expecting. We expected him to crawl, walk, talk, do well in school, get a good job, find a nice spouse, bring us grandchildren, perhaps care for us as we age.

Once we learned my son Lucas’ diagnosis of Menkes syndrome, all those 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."