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My favorite childhood Christmas memories lie in the anticipation surrounding the lights, and the stories and brightly wrapped gifts all waiting for Christmas day.

When I got married, my husband and I decided that we would celebrate Advent to prepare our family for the great feast of Christmas. I recall our first Advent even more than our first Christmas because my birthday comes before Christmas.

For my first birthday as a married woman, my husband prepared a scavenger hunt. I woke to handwritten clues on tiny slips of paper. The first clue led me to a donkey. I knew then my birthday surprise was an entire manger complete with all the figurines. I requested resin figurines because I wanted a manger that was meant to be touched and played with by our future children.

By our second Christmas, my son was born and on our third Christmas, he helped me set up the manger, which never stayed in the same place the entire Advent and Christmas season. My son played with each piece all over our tiny house, thus beginning one of my most treasured Christmas traditions: the messed up manger.

That messed up manger led to the purchase of more manger “play sets” made of wood or resin so that each of my four children could imagine the Christmas story and embellish it with it stories of their own, as they held the figures in their tiny hands.

One of my fondest Christmas crafts is a picture my son drew of Joseph and Mary on their journey to Bethlehem. A pregnant Mary was sitting on the donkey as Joseph parked them in front of a 7-Eleven. By the time he drew this, my son was an older brother to two sisters and he knew that every expectant Dad stops for coffee on the way to the delivery.

As our kids grew, we celebrated the feasts of Advent, beginning with December 6, the Feast of St. Nicholas, when the children woke to their shoes filled with chocolate Santas and Christmas bells.

We homeschooled our kids through high school, but all formal schooling stopped the week of Thanksgiving until shortly after Christmas to focus our studies on reading Christmas stories and practicing holiday traditions from all over the world.

December 12 marked the Feast of Our Lady of Guadalupe as we studied Mexican and Latin American traditions. December 13, a favored tradition of St. Lucia, popularized in Sweden, meant rising early to prepare hot cinnamon buns, as my eldest daughter processed through the house with a candle-lit wreath on her head (usually battery operated candles) singing, “The light of Christ has come into the world.”

Our nest is largely empty now (dogs outnumber children at home). My two eldest daughters live in the Midwest and in California and my son is building his own life on the North Fork twenty minutes away.

Still, I enjoy my Advent and Christmas through the eyes of a child.

The greatest blessing of raising a child with cognitive disabilities is that childhood remains.

I remember when my eldest daughter, in the wisdom of an eight-year-old sister reflecting on her little sister’s life, whispered, “Mommy, It’s been hard to see Johanna struggle since she was born. But it is a blessing we got to enjoy her as a baby for so much longer.”

While most parents thankfully don’t have to shower and dress their 20-year-olds, read them stories and tuck them into bed or get woken up in the middle of the night because their young adult needs help; most parents also don’t enjoy childhood again until the grandchildren arrive.

At my house, we enjoy the perpetual state of childhood, wrapped in a fun young adult, as Johanna reminds us to see the Advent and Christmas season through the eyes of a child.

Johanna recently had two more surgeries between Thanksgiving and Christmas. The hair on her head is partially shaved, revealing stitches and scabs that take time to heal, but Jo’s excitement over the feasts of Advent and the anticipation of Christmas fill this empty house with joy.

Jo’s eyes were wide with wonder when her boots were filled with chocolate on the Feast of St. Nicolas, and with devotion as we celebrated St. Juan Diego and read the story of Our Lady of Guadalupe’s appearance to him in Mexico so many centuries ago. No matter if she’s hooked up to an IV or struggling with pain in her head, she belts out the verse and chorus of “O Come O Come Emmanuel” as I light the candles on our Advent wreath.

This past week, as I was rushing to get us both out the door for the third trip in a week, to our NYC doctors, I was tempted to forgo a favorite Advent celebration. Jo wouldn’t have known it was the feast of St. Lucia, a martyr and the patroness of the blind who brought light and food to persecuted Christians hidden in the catacombs beneath Ancient Rome. Even though we’d spoken about St. Lucia just the day before, brain injury makes her forget and would get me off the hook from celebrating on the feast day.

But when Jo awoke that morning, greeting me in her Macy’s Santa pajamas, with “Believe” written whimsically across her chest, I knew I had to stop and celebrate the season with this little one in my midst. When I reminded Johanna that today was the feast of St. Lucia, Jo’s eyes danced with excitement and she asked about the biscuits.

Thankfully, the biscuits were home-made at Main Road Biscuit Company, a favorite stop in Jamesport. The Advent wreath fit neatly on Jo’s head. All the critical parts for our celebration were readily at hand, except one — lit candles.

I debated whether or not to actually light the candles on the Advent wreath, knowing it would be sitting on top of Johanna’s million dollar head. But Johanna reminded me that she was 20 now and she could be trusted to stand as still as St. Lucia. I videoed Jo in front of the Christmas tree belting out the song she has heard sung every Advent since she was a baby. It was an advent feast to remember. Still, I decided not to show her neurosurgeon the pictures.

Later that day, we attended the Christmas party at the children’s day hospital in NYC. Johanna led the Christmas carols with the music therapists as children, many with bald heads and plugged into chemotherapy treatments, sang along. Johanna waited with great anticipation for her chance to visit with Santa. Her anticipation was contagious.

As I watched her, I caught it too.

Miracles of love and Christmas will always be with me as long as Johanna is among us. The miracles of a light shining in the darkness and God coming to live among us in a manger in Bethlehem are not so hard to believe when you see it through the eyes of a child.

Christmas miracles and indeed, the kingdom of heaven, belongs to such as these.


Benthal Eileen hed 14Eileen Benthal is a writer, speaker and wellness coach with a B.A. in Theology from Franciscan University. She is the author of Breathing Underwater: A Caregiver’s Journey of Hope.

Eileen and her husband Steve live in Jamesport and have four young adult children.

Eileen can be reached at

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Eileen Benthal
Eileen is a writer, speaker and wellness coach with a bachelor’s degree in theology from Franciscan University. She and her husband Steve live in Jamesport and have four young adult children. Email Eileen