I come from a diverse Christian background. My mom is Mormon, while my dad was raised Episcopalian. I’ve dabbled with nondenominational, Baptist, and Pentecostal churches in my own search for what was right for me.
When my daughter, Austen, was 4 months old — just three weeks before her first seizure from Dravet syndrome — a former teacher of mine invited me to the Episcopal church in our hometown. It felt like home right away. The mix of tradition and caring for the community was exactly what my soul had been yearning for.
When Austen had her first hospital stay, the parish reached out, even though they barely knew us. They prayed for us and checked in on us, and when we came home, they worked with the nursery staff to make sure it was safe for Austen to stay there. They stayed by our side through every step of our journey to find out what was wrong with our girl.
I loved it. I felt deep in my soul that this was where we belonged. But I hadn’t even witnessed the best part (in my opinion) of the theological calendar yet.
Austen was released from the hospital just a few days before the first Sunday of Advent in 2015. I didn’t know much about Advent except that it was a time of reflection and rest before the business of Christmas. That first year, we didn’t have an Advent wreath, and we didn’t do anything special. But I took the idea of rest to heart, and it was just what I needed.
Five years later, we have come up with a few traditions to help us along during this time of resting and waiting. For starters, we now have an Advent wreath. Although it’s not necessary, I find that it is a great learning opportunity for my kids.
Every Sunday, we sing our Advent song, light that week’s candle, and talk a little bit about the week’s theme. The first week is prophecy and hope, the second is faith and love, the third is joy, and the fourth is peace. On Christmas Eve, we light the center candle, which represents Christ and all that he did for us.
Each year, I also wrap Christmas books and movies, one for each day during Advent. Like a traditional Advent calendar, the kids open one “present” each day. The catch is that the presents stay the same each year because Mama is on a budget. In the evening, we spend time as a family reading the story or watching the movie they opened.
In a life that sometimes seems fragilely held together by string, it can be hard to rest. Sometimes it’s hard just to stop to take a breath. Between seizures and autism behaviors, doctors’ appointments, and lab work, our lives are always busy. I feel it as a parent, and I see it reflected in my children as well.
Austen thrives in a routine, but Dravet syndrome hardly lets that happen. It’s not like I can tell her doctors she can only have her appointments at 9 a.m. so that she doesn’t miss her normal lunchtime. Or tell her seizures to come between 3 and 4 p.m., when we don’t have anything scheduled.
Because our lives cannot be as structured as her brain would like them to be, her brain rebels by acting out. The more we stray from the routine, the more hectic and aggressive Austen becomes. It’s not fun for any of us.
This is why I need Advent so much, and it’s why I make sure we celebrate it. Although I can’t tell Austen’s brain to not seize, I can make sure we are focused on the things we all desperately need: rest, a slowed pace, and being together.
It might sound extreme, but I try not to schedule too much outside stuff during this time. No doctors’ appointments or dentist appointments, and we try not to have extracurricular activities going. We focus on our home and our family.
Over the years, I’ve noticed the positive effects this time has had on all of us, especially Austen. Without the chaos of running around to get everything done, the entire environment of our home seems calmer. This makes Austen calmer.
Don’t get me wrong, she still has her moments. We still have several meltdowns during this period. But they’re fewer than usual, and that’s a welcome change for everyone.
I’m not here to say that everyone should celebrate Advent. I know not everyone who reads my columns are Episcopalian or even Christian. That’s OK! You do whatever works best for your family.
For my family, we need this period of resting and reflecting. We need it as a family, and we need it individually, too.
Note: Dravet Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Dravet Syndrome News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Dravet syndrome.
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