Last year at this time I was running back and forth to NYU with my daughter Johanna who was struggling with symptoms of a shunt malfunction.
While I was grateful it was December 2020 and not March 2020, it was still a struggle to deal with the emergency room, surgeries, and hospitalizations in the midst of a pandemic. Three brain surgeries later, we arrived home on Christmas Day to a house filled with festivity and light. By the grace of God, we were able to celebrate the Christmas season at home.
Early in 2021, we put the last of the Christmas decorations away. I remember holding our Christmas-themed face masks and thinking, “Well, we won’t need these next Christmas. But they sure are cute.”
I put the masks aside in a basket on my kitchen counter where they sat until last week. While our booster shots gave us more confidence in protection, we started using those holiday face masks again when we are in close contact with others.
What a crazy two years this has been.
I shared with someone the other day that I believe one of the things we learned during this pandemic is that “small is beautiful.” Gatherings are more intimate and life became smaller and focused on the needs of our families, neighbors, and local communities.
One year and three vaccines later, it was wonderful to spend Thanksgiving with family and friends and to breathe a sigh of relief and hope for this holiday season. Our first Sunday of Advent was Thanksgiving weekend, so we started decorating slowly.
We have always celebrated Advent as a time to prepare physically and spiritually for Christmas. Raising a child with developmental disabilities means that traditions must continue as they have always been. At our house, that means Advent wreaths, Christmas trees and nativities in most every room and celebrating the feasts of Advent like St. Nicholas with candy in the shoes, and St. Lucia with cinnabons.
The other day, Jo and I were admiring our Christmas tree. One of the joys of moving into this house four years ago is that we can have a 10-foot-tall tree. Since we can, we do have a 10-foot tree, complete with pretty golden lights that sparkle like tiny stars on evergreen branches.
As Jo and I were discussing our beautiful tree, I commented that it looks beautiful without ornaments. I suggested that we stick with this less is more/small is beautiful philosophy and leave the ornaments packed away this year.
Johanna responded with a startled look and said to me: “The best way to spread Christmas cheer is singing loud for all to hear —AND DECORATE. You have to decorate the tree.”
I sighed and chuckled at Jo. I have found that there are some topics which are not affected by brain injury. Christmas is one of them. Johanna is very clear. The gatherings can be small but the decorations and traditions must remain the same. There will be no cutting corners on Christmas.
This year, as last year, we have entered the RCSD SEPTA Holiday Light Tour. It’s a holiday fundraiser for SEPTA and in particular invites families with children with special needs to take an evening drive to see Christmas lights. Beloved kindergarten teacher and friend, Keri Stromski, who died of cancer last spring, was an inspiring force behind the first annual light tour in December 2020.
Keri loved Christmas. She inspired all of us to decorate well and do it early so as to let the light shine in the darkness. She was the only person I have ever met who actually kept her Christmas tree up longer than we did! This year, the SEPTA Holiday Light Tour suggests that a rainbow be included in the decorations in honor of Keri.
At our house, that was easy. Jo created two rainbows during the shut-downs. One was for our house and the other was for Keri. This Advent and Christmas season, the rainbow is on display in Jo’s cottage in honor of Keri who inspired us to always keep Christmas alive in our hearts.
Also this Advent, Johanna is partnering with Santa to give other kids with special needs a chance to experience the hope and joy of the holidays in a slower, quieter environment. Jo had her first day on the job with Santa at Santa’s Christmas Tree Farm in Cutchogue () last Wednesday.
I was brought to tears when I witnessed kids with autism and other special needs slowly warming up to Santa and grateful parents enjoying pictures with their kids. The program runs for two more Wednesdays, Dec. 8 and 15 from 4 to 7 p.m.
There are a lot of ways to prepare for the holidays and especially for Christmas. Preparing in the spirit of Advent keeps the focus on the things that matter the most. If living through this time of pandemic has taught us anything, I pray it has given us an appreciation of life and a hope for better days ahead.
Prepare this Advent by bringing light into the darkness and hope to the hopeless. Prepare for the joy of giving to others with love.
Spread Christmas cheer. Sing aloud — and be sure to decorate the tree.
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