Twenty years ago, my first child, Sarah, was born with Downs
Syndrome. During the early years of her life as I grappled with
the realities of her disability, I began to recognize that my
daughter was a gift from heaven. As an infant, Sarah always
smiled - always. During her toddler years, Sarah seemed to
defy her disability as she slowly learned to walk, talk, and sing.
Now that Sarah is a young woman, she continues to inspire me
with her zest for life and her simple perspectives on faith, hope,
As a sacramental coordinator, I look back on the spiritual
lessons she has taught me when I prepare young parishioners
to receive the sacraments.
I recall one Sunday morning I sat in the back row of church. At
nine years old, Sarah loved Mass, especially the music. As the
organist began to play, Sarah slipped into the main aisle of the
church and began to dance, twirling and swirling and bowing to
the music. I felt my face flush. As her mother, I felt responsible
for the disruption. "Sorry, Mom . . . I couldn't help it." Sarah
would stutter as I escorted her back to our pew. "I love to dance."
A few months later, I enrolled Sarah in preparation for First
Communion. "I am so excited," Sarah told me as we made our
way, hand in hand. "I hope no one teases her," I thought to
myself. A teenager with a ponytail, tie-dyed shirt, and chewing
gum drew near. She knelt down, made eye contact with Sarah,
smiled, and they hugged. Our church had arranged for an aide
to work with Sarah, but I still felt uneasy. "Sarah likes to dance.
She loves music. Sometimes she . . . ." The teenage girl gave
Sarah a high five. "Cool," she said, "She will be fine."
And the period of preparation did go well for Sarah. My next
concern was the event - Sarah's First Communion. With her
hair curled into ringlets, I thought she looked like an angel.
Soon the church became crowded. "Please God, don't let Sarah
dance . . . not on this day," I prayed as the opening song began.
"Today we welcome our First Communicants," the pastor proclaimed.
"When I call your name, please come forward." Organ
music began filling the church. Making her way toward the pastor,
Sarah made a couple of graceful glides and then stopped
abruptly in front of an elderly woman in a wheelchair. The lady
smiled, her face wrinkled with age. Sarah smiled back and curtsied.
Then, as the music played on, Sarah twirled toward the
altar, her veil billowing, her face beaming. I felt my face turn
red. I rushed forward to retrieve my child, but the woman in
the wheelchair reached out for my hand. "Let her dance! She's
just praising God." The woman's eyes sparkled with tears of joy.
I looked around the church. People were grinning from ear to
ear. Some were even dabbing their eyes with tissues. I stood in
the aisle and watched. As Sarah twirled her way back to me, I
could hear the voice of God whispering, "Sarah was meant to
dance. This is her gift. She must share it."
Recently, as I stood watching another First Holy Communion
procession in our parish, I couldn't help but wonder if there
were children who had not been invited to attend this sacramental
celebration. How many parents of children with disabilities
had avoided this experience simply because their child's disability
required extra care and sensitivity? "Thank you for Sarah," I
prayed, watching the children make their way to the altar.
As a Catholic educator, I have observed the countless
ways my daughter has influenced my ministry, challenging me
to adapt and expand my programs to include those often considered
the "least of these." As catechetical leaders, we need to
be vigilant in seeking out members of our faith communities
who have disablilities, especially those children who are of sacramental
age. Consider these ideas:
- Be alert to families of children with disabilities.
Introduce yourself; let them know their child is welcome
in your programs.
- Adapt sacramental programs to include children with
disablilities. Train aides to work one on one with them.
(High school students can do this work well.)
- Seek out medical or social work professionals in your parish
for input as you adapt your program.
- Include space on registration forms for families to
describe their child's disability and needs. Follow up with
a personal phone call or meeting.
- Offer a home instruction faith formation plan for children
who cannot attend the onsite programs.
- Strive to make all parish events inclusive. Be sure that
people with disabilities are invited to present the gifts at
Mass and to serve as liturgical ministers.
- Plan events that will be fun for children with disablilities
and host a potluck for them and their families. Last
month, our topic for the potluck was "What Makes Me
Happy." One by one, participants drew their "happy"
illustrations on the board and all were appreciated.
Finally, become more comfortable with the spontaneity
of children with disabilities. Learn to relinquish perfect organization.
Let people with disabilities lead you in areas of faith,
hope, and love. Remember that often such unusual and seemingly
untimely expressions are really the promptings of the
Rose Fitzgerald Kennedy Program: sequential, developmental
religious education program for children,
young adults with cognitive disabilities. Sister Michelle
Grgurich, vsc, Department for Persons with Disabilities,
135 First Ave., Pittsburgh PA 15222, 412-456-3119,
The National Catholic Partnership on Disability (NCPD):
committed to full inclusion of all disabled people
in the Church; newsletter, resources, www.ncpd.org.
Joni and Friends: Christian organization supports
disabled and families. Resources easily adapted to most
sacramental programs, www.joniandfriends.org.
© 2013 Archdiocese of Chicago: Liturgy Training Publications,
3949 South Racine Ave, Chicago IL 60609
is a Sacramental Coordinator at St. Elizabeth Ann
Seton in Hastings, Minnesota, and author of five books, including
What I've Learned from My Daughter from Liguori Publications.