Photo courtesy of Epilepsy Foundation Alabama
Deason Christmas 2020
Prime and Leah Deason with their son Ozzie, who turns 3 on Dec. 31. Ozzie has a rare disease that has caused him to have epileptic seizures every day for the past 920 days.
Christmas with epilepsy is a land mine of emotions.
It’s the gift you didn’t want or ask for but still receive anyway. Ozzie slept all day long with seizures mixed in between. He didn’t open or play with presents or really care what Santa brought him.
Holidays can be extremely tricky with a medically complex child. You have to navigate social media with perfectly curated photos and videos of kids opening presents and playing with their fun new toys while you sit and watch your child sleep and have seizures. It definitely stings and is hard on this mama’s heart.
Holiday traditions and Christmas mornings look a lot different than what I always dreamt it would be, and you know what? It’s OK to feel sad and grateful at the same time. And that’s where I am. I cherish the time Ozzie was awake and alert, the extra snuggles we got under the blankets in our comfy jammies and just being together to celebrate Jesus’ birthday.
So here’s to the families that didn’t get the perfect photo … and the families that were separated from their loved ones … and the families that spent the holiday with their child in the hospital … and the families that were missing lost loved ones.
Christmas doesn’t always have to be the “Most Wonderful Time of the Year” because it often isn’t.
I’ve learned to find moments of joy amongst the tears and focus on Jesus and how lucky I am to have Ozzie in my arms because at the end of the day, that’s all that truly matters.
2 Corinthians 1:3 "Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God."
Submitted by Leah Deason, Lake Cyrus resident, Epilepsy Foundation Alabama Community Engagement Board member and Epilepsy Foundation awareness ambassador.
