Last week was nonstop so I made it a point to close the computer over the weekend. It was tough, but for three days straight, I pushed to spend several hours completely unplugged.
This is why we moved here from California; to enjoy moments like Saturday’s.
I saw my youngest niece for her 4th birthday on Saturday. She has a severe case of SynGAP 1 Syndrome, an extremely rare genetic mutation. Her synapses between neurons don’t form easily, causing severe issues in development: learning, memory, motor skills, speech, and even regression of progress. At age 4, she has had more seizures than I know.
With the other nieces and nephews and my husbands immediate family, we all gathered around for her to blow out the candles. I already knew my in-laws raise great kids; All the kids treat their cousins with love and respect. But on Saturday, I could just feel in the room that this birthday was the most special to all of them. No one moody about cake flavor, no one trying to run back to a Nintendo Switch. They all genuinely wanted to be present in that moment. My nieces and nephews are all 11 and under, but they share love and compassion beyond their years. Though I’ve now lived in Florida long enough to watch several family members blow out birthday candles, this one felt unforgettable. This is why we moved here from California; to enjoy moments like Saturday’s.
I am so very lucky and proud to be around to watch my niece’s progression. Her parents randomly mentioned in conversation that the non-profit research group hinted that they needed help with their website. My husband, the darling and senior engineer he is, immediately jumped at the opportunity to help. I want to be at that stage of my engineering career. Coming from a 10-year career as a teacher, I want to be able to focus on others again.
For now, I will make it a point to cherish all the progress that my niece makes, that all my nieces and nephews make, that I make, and moments like these away from my computer.
* Photo posted with parent permission. It is illegal to copy, distribute, or adapt photos.
Donate $10 to SynGAP 1 Research In honor of my niece’s birthday
RachelElysia 