A blog about us. our lives. our struggles. our victories.

Rob and Anne-marie

Happy birthday, Reagan. Three years ago, we took this photo…it was before we knew anything was wrong with your newborn screening. A few short hours later, we received a call that would change our lives forever GA-1. We worked so hard to never get you sick… …but one day, you got sick. And we did […]

We just got done with our annual 24-hour EEG and Reagan did awesome. Remember last year’s EEG? We were stuck in a tiny room, in our Dr.’s outpatient facility, it was 80 degrees, we had to share a community bathroom with 12 other patients, Reagan exploded out of her diaper in a bouncer and she […]

I had an unexpected interaction with a man named Oscar today. I met him a few years ago through a fabric store recommendation for a person who could help re-upholster some chairs and pillows. Since then, he’s re-upholstered a glider, four barstools (twice) and six pillows (twice). Most recently, he fixed Reagan’s fabric, fold up […]

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