... what a year this past week has been.
Two weeks ago, my mom and I were planning to head to Germany and Spain. A week ago I knew life was on the edge of flipping upside down. And now life is completely different. And it'll be different again in a week.
I haven't had time to process much of anything between work being insane (as I work supporting assistive living) and trying to manage the education of a 2nd grader and a 1st grader. The first grader has an entire team of more than a dozen folks who support him. Now, we have us, with one or two childcare providers we're allowing into our home to help us balance work, school and life.
So, posts may be a bit sporadic here as we hunker down. Stay safe and be well. Be kind and help others. Have hope and pray.
This is our family's journey with the rare PIGN genetic disorder Multiple Congenital Anomalies-Hypotonia-Seizures Syndrome 1. When our son was diagnosed in November 2015, we were told he was the 15th documented case in the world. We've discovered more affected individuals since, but it's still an extremely rare and unknown condition since its discovery in 2011. Our hope is to create awareness of the disorder and foster a sense of community among those affected by the disorder.
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