(Insert deep male movie trailer voice)
In a world where Bar B Q causes real danger…….
Last night we met family at a local BBQ restaurant. My cousin and her husband were in town and it was a great time to catch up. We rarely go out to eat as a family, so this was a real treat. I was a little concerned about how Gabriel would behave. This was his first time in a sit down and order restaurant in over a year. He did remarkably well considering all of the amazing foods being passed back and forth. He made a salt, pepper and seasoning concoction on this plate, dipped his pizza and chocolate hearts in it (EEEWWW!) and chomped them down. At one point I caught his arm reaching across the table to dip his pizza in the BBQ sauce. Thankfully I caught it and told him that wasn’t safe for his body and took the pizza away…but that moment was scary. The instant of oh no! what if we mess this seizure free streak up.
It is so nice not being on edge all the time, but the last few days he has not been eating enough and doesn’t have enough energy. He has tripped over things and fallen down several times because his reflexes are so slow. His sleeping patterns are bonkers. He is still sleeping a lot during the day but then is awake in the evening and into the night. It seems like we are constantly adjusting to his changing physical, mental and emotional needs. Logically I don’t want my 4 year old awake and playing at 11:00 p.m. at night but if his body has not let him be a kid that day, I try to sit down with him, and enjoy the moment.
A friend shared this amazing song about parenting special needs kids and I had to pass it along!