Diane's story shares their experience, joys and grief with other special needs families
The following article was written by Monica's great-aunt Diane in commemoration of Christmas 2004.
A Christmas Reflection
I sat at the island in the kitchen at noontime on Christmas Day feeding my grandniece her simple lunch—a small container of yogurt and about 5 ounces of grape juice.
As I put each measured spoonful into her mouth and watched and waited patiently while she tongued and swallowed it, I was moved by the Spirit to understand for the second time that day what Christmas was really all about. A renewed insight I had prayed for throughout Advent.
The first glimmer occurred at Mass when an older woman dressed in shabby clothes got up and faced the congregation at the Offertory and began to move her arms around. I thought reflexively, “Great. Now what?” And I was soon humbled by my snap judgment.
The woman was signing Silent Night as we sang. Her movements were so graceful and meaningful that I was mesmerized. By the time she had done this through 3 verses, I was moved to tears. Every gesture was an eloquent expression of the Bethlehem story. What she was doing up there was holy and supremely giving to all of us.
Like the little drummer boy, she was giving her best to Him and letting us know that we were all likewise called to be childlike in our giving and receiving, in our understanding of our relationship with Jesus. It was an awesome experience, and it set the stage for my second encounter with the Divine at the island in the kitchen.
The simple act of feeding Monica made me go a bit weak in the knees. Here, too, was God’s child. Completely dependent upon the adults in her life to keep her world safe and to provide the nourishment she needs to survive. The voice in my head reminded me once again, “This is what it’s really all about. It’s about a child inviting us to care about children. About children everywhere in this troubled world. Needy children. Young and old children.
Children who hunger for the light of recognition in our eyes. Children who hunger for visibility. Children akin to my own inner child. And that bit of enlightenment and reawakening slowed me down to savor the holiness of the moment. To be truly present with every spoonful fed. Every sip taken through the straw. Every dribble wiped up.
The whole process took close to an hour, allowing for seizure activity, distractions and a loss of interest and/or focus. You see, Monica is 17 years old. She was born with part of her brain in a sac outside her skull.
As a result of this anomaly and subsequent surgery, she has multiple disabilities.
She doesn’t speak, cry, chew, shed tears, or sweat. Seizures, great and small, are a part of her daily life.
Monica is legally blind and doesn’t make eye contact. She has a deformed right hand and has arm surgeries for amniotic band syndrome.
Several years ago she had a rod inserted in her back to minimize the effects of scoliosis. Monica will always be in diapers. She will always need compassionate care.
This wonderful young woman who is trapped in time and lies in a bean bag chair for hours on end playing with musical toys or with colored beads around her neck is a Christmas gift to us 365 days a year. She is a symbol of heroic dayliness and courageous perseverance, as are her parents and younger sister Martha. Together they give new meaning to the term holy family.
When I am with Monica I am my best self. I become earth mother and potential slayer of dragons in her behalf. And that is her main function in life. Her call is to give to all of us, again and again, the opportunity to share unconditional love.
To let down our defenses and to marvel at all the small growth moments that touch our souls and keep us vulnerable and receptive to God’s presence. Above all, she invites us to be child-like in our faith and to trust in a Creator who always knows where we are and what we need. A Creator who knows the difference between a fish and a snake, a scorpion and an egg, and then some when it comes to sustenance and nurturance.
Monica keeps hope alive in our sometimes jaded and weary hearts by reminding us of that story in Luke 11:11 every time we gather for a meal. Every time we sit quietly on the couch together and cuddle, allowing calm, peace and simplicity to seep into our souls. She is God’s blessing personified, our connection to the mystery of the stable and the universe. A gift of immeasurable value.
My prayer to experience Christ’s birth with a more open heart and contemplative vision this year was answered. Christmas 2004 was indeed truly memorable, a challenge to my spirit. And all because of Silent Night, yogurt and grape juice, and a child named Monica.
Diane L. Cardinal