One of the harder things when Teddy doesn't sleep at night, aside from losing much needed sleep, is all the time it gives me to ponder things. About a year ago, I was consumed with fear, anger, frustration and a feeling of complete helplessness after one of Teddy's seizures. I couldn't fall back asleep after Teddy finally succumbed to sleep, so I was searching for something: answers, peace, the ability to fall asleep ...
When I was a child, I read the Bible cover to cover, underlined favorite passages and jotted down lists of verses that resonated with me. That night I couldn't sleep, I looked up all the verses I had written down as a child until I got to Romans 12:12.
That was where I found what I was looking for: guidance, hope and a bit of peace.
"Let your hope keep you joyful, be patient in your troubles and pray at all times."
It's applicable to nearly every situation for me.
Worried about the future? Let my hope keep me joyful.
Beyond frustrated because Teddy is screaming not sleeping? Be patient in my troubles.
Fall while running and land in a bush? Pray to thank God I didn't land in a cactus. (True story. Happened in Zion National Park this month.)
Every time Teddy has a seizure that turns our world upside down all over again? All of the above.
"Let your hope keep you joyful, be patient in your troubles and pray at all times."
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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