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Showing posts from June, 2018

Discover

Discover. This was the word for the year I picked back in January. There were several different reasons behind this choice. For this to stay an appropriate blog post length instead of a novel, I will focus on one of the reasons behind this word choice. Kaleb. One of the many reasons I chose this word was to remind myself to enjoy Kaleb and enjoy watching him discover the world around him. Not to get so caught up in being his medical coordinator, therapist, teacher, nurse, and full time advocate. To remember to be his mother and to take the time to discover him and his personality.
While I think this is something many of my fellow parents of a children with an extra chromosome can relate to, I will only speak for myself. We all say, “Don’t compare,” and we sure as heck try not to, but it can be hard. I often found myself comparing Kaleb to milestone timelines, his fellow peers of various ages at daycare, and even those buddies of him rocking that extra chromosome. It would take the joy…

These Adventures We Call Life: A New Diagnosis

I’ve unpacked most of our luggage from vacation. Laundry and dishwasher are both running. I’m now sitting here in the recliner researching and reading, trying to expand my knowledge on Kaleb’s latest diagnosis. I am reading about cerebral palsy, or more specifically, spastic diplegia CP. The movie Avatar is playing in the background. Why do I mention the movie playing when I have much more on my mind today after Kaleb getting yet another diagnosis added to his seemingly ever growing file? It’s because the choice in movie.
After a few minutes I am reminded as my heart aches from processing this new piece of information that this movie ironically was on the tv on another hard day in my life. That realization, the recall of that memory, and life following suddenly makes it easier to process this new added section to Kaleb’s file. That day was the day after Kaleb’s diagnosis of Down syndrome. It was also our last night in the hospital. I was going to be discharged the following day. TJ an…