“I wish all people could know the joy of having a child with special needs.” The woman offering her testimony at a women’s retreat ended her story with this sentence, one that has reverberated in my mind for years. It was a sweltering summer day, and the heat’s intensity only aggravated me all the more, because I was six months pregnant with our first child. I couldn’t fathom why a person would willingly desire that everyone experience what I perceived as a lifetime of exhaustion, frustration, sadness, and struggle.
All I understood of parenthood was based upon the cheerful platitudes of veteran moms at my baby showers. This was the first I had heard of a mom’s journey with her autistic son — the pain, the raw emotion — and yet joy and laughter?
It was a paradox I would not fully comprehend until more than three years later when our darling Sarah was born with a rare genetic condition called Apert syndrome.
Other parents of special-needs children acknowledge the subtle underpinnings of joy mingling with the challenges of caregiving, but the joy often far exceeds the struggle.
Rick Becker, whose son Nick has Down syndrome, explains:
“It’s not special or different or extraordinary needs that make the difference. Aren’t we all ‘special-needs children,’ after all? Addressing Nick’s particular needs took on urgency and required a steeper learning curve than … some of our other kids,” says Becker, of South Bend, Indiana. “But the joys are the same. The gift is the same.”
Mary Donatelli, who resides in the San Francisco area and whose son Bennett has Apert syndrome like Sarah, says she finds joy in the simple moments of every day.
“There is so much joy and lasting peace if you just surrender your expectations of what life is supposed to look like,” she says. “Just trust that God has this all figured out in a big way.”
There’s a specific level of abandonment to God’s will that occurs when a parent raises a child with a diagnosis.
Somehow, despite the fact that some children have diagnosable challenges, parenthood itself is an opportunity to discover the beauty of self-denial and clinging to the cross.
“Christianity is tethered to the cross, and it’s through selfless surrender that we have the hope of heaven,” Becker says.
It’s not so much that all parents need to understand the joy of having a special-needs child, but rather to embrace the joys of any and all children that God brings into our lives. Sometimes it just takes having a medically fragile child for that truth to become evident.
Processing the possibility of joy in the midst of my own grief was unbearable. The swarm of diagnostic tests and caring for a new child offered little time for consolation and contemplation. Yet somehow, on a random day in those early months, I wept bitterly — at the loss of the family I imagined we would have, at the acknowledgment that Sarah would be treated cruelly by many people in her life, and at all the mysteries that seemed to enshroud her diagnosis.
I longed for some indication that she would live a long, happy life, but all that came to me while I was in the throes of darkness were the words I’d heard at that retreat: “I wish all people could know the joy of having a child with special needs.”
Grief is often complicated in the early days and weeks following a loss — of a dream, a person, or a particular life we imagined to be idyllic. But if we see beyond the loss itself, God illuminates the interior darkness with glimpses of his light.
To Donatelli, “Everything will pass — the hard times and the good times — and it helps me to stay in the moment and not become obsessed with any one stage we are in. … Even in the hard times, my family is surrounded by God’s love and protection.”
When we cannot abandon our quest for answers in the midst of the inevitable mysteries of life, we must remember the importance of choosing victory over remaining a victim.
The truth is that God carries us from a place of tragedy to a place of triumph. Especially when we are entirely unaware of his enveloping love, God moves us in a direction where brokenness becomes something new and beautiful. Though the early days and months following Sarah’s birth were filled with many questions about my Catholic faith, the Holy Spirit reignited the frail hope that had dwindled and been submerged by the floods of crisis parenting.
The tiniest flicker of a flame was reborn in my heart the day I chose victory. But it wasn’t merely human victory — it was victory in the cross. I knew that choosing the cross meant that suffering would become my path to heaven. Tragedy, though unwanted and unwelcome, can become our means of sanctification. Everything is grace, as the beautiful Little Flower, St. Thérèse, once eloquently said.
Jesus speaks to us in the midst of what we initially view as tragedy: the loss of a “normal,” typical life, the chronic grief of having a medically fragile child, the vision of the ideal son or daughter. Once we see the hidden gift of our child’s condition, it is no longer a tragedy but an irrevocable, immeasurable blessing. Sarah’s life is not unique only because she was born with a rare disease; her life has meaning merely because she exists.
Every human life is precious, which has become a cliché in Catholic teaching. How many of us would truly welcome a child with a diagnosis if we had a choice, though? Most women pray for “healthy and happy” babies when they are pregnant, not “whatever is in God’s plan for this child.” There’s a deeper level of dying to self that occurs when parents are truly open and willing to accept the miracle of the child God plans for them, healthy or otherwise.
Children with special needs open our eyes to the lost wonder we once possessed when we were young. Because of their unique worldviews based on experiential suffering, they are somehow aware of other people’s suffering and are able to touch that place of pain with their ability to love as Jesus loves.
Donatelli knew that, as a Catholic, she was called to love all people. However, Bennett’s natural ability to reach people of all varieties was incredibly eye-opening to her: “I tried to demonstrate kindness and love to others before my son was born, but his life has solidified in my heart that my very purpose on earth is to show love to others,” she says.
We may hear that raising a medically fragile child is exceptionally joyful, but we still wouldn’t want to experience it for ourselves. It’s because we falsely adopt the societal perspective that children are difficult, cumbersome, and frustrating. We only hear about the “poor quality of life” these children and their families carry, not the inspiration and incredible spiritual growth that happens on a daily basis. Why, then, would we desire to be among the ranks of parents who love every child, especially when that child requires extra medical care?
Becker and his wife, Nancy, were unaware that Nick had Down syndrome until the day he was born. On that day, even the Catholic physician who delivered Nick seemed apologetic when he sheepishly offered the Beckers several “options” for Nick’s care, none of which included keeping him at home and providing loving care from the family environment.
“The Down’s didn’t define him then, nor does it now. Nicky is just one of the gang — with special needs, to be sure, but no less loved or valued,” Rick Becker wrote in blog post titled,“Our Living Icon.”
But the joy, the blessing, the gift was not lost on the Beckers.
“We like to think of Nick as our little living icon — a window into the heart of God — and a reminder that we’re not put here on earth primarily to be productive, but to love and be loved,” Rick Becker wrote in a 2009 article for The Sign of Peace journal.
“Every child is a precious gift, created perfectly in his image,” she says. “When I think of how God has known my son since the beginning of time — every hair on his head — I am greatly humbled. Nothing about Bennett is imperfect, even if the world sees him that way.”
Sarah has humbled me in immense ways, especially when I see how she embraces each day with exuberance. Everything is new to her, and she lives with delight. The people she meets along the way are always touched by how she notices them, beyond their baggage. When I see her interact in the world, I am eternally grateful that God chose me to be her mother. I’ve learned that joy is a virtue I must choose on a daily basis.
Now that my heart has expanded beyond explanation, joy is among the spiritual gifts I have finally chosen amidst crisis parenting.
FIRST STEPS FOR FACING A DIAGNOSIS
Find a person who is willing to be your ‘family liaison’
This person will be the one others approach when they want to help you, as they inevitably will. The family liaison will coordinate meals, housecleaning, running errands, and even a prayer chain or rotation.
Make a list
Most people in your com-munity will want to help you out once they discover that your child has special needs and may need intensive therapy, surgeries, specialists who deal with hearing and vision, and so on. However, they may not know how to approach you or what to offer because they don’t want to offend you. Be prepared for the question, “How can I help?” by making a list of what would be most helpful to you, such as doing chores, delivering meals, babysitting, or offering Holy Hours and Masses on behalf of your loved one. Give this list to your designated family liaison and refer the inquiring person to them.
Start a blog
You will likely be over-whelmed with this jolting change in your life, and answering people’s well-intentioned questions can quickly deplete you emotionally. Conserve your energy by starting a CaringBridge (CaringBridge.org) or CarePages (CarePages.com) web page, both of which are free. You can post updates and then refer people to your page when they ask about your child.
Connect with your community
Make a phone call to your diocesan office or ministry for people with disabilities and ask if there are nearby support groups. Visit NCPD’s website for pamphlets and brochures, DVDs, and books that can aid you in understanding how your child’s needs can and should be addressed liturgically and pastorally. Search on Facebook or Google, too.
Cling to your faith
Now, more than ever, you will need the sustenance your Catholic faith offers you. Be kind to yourself if you used to be a daily Mass goer but are now only able to meet your Sunday obligation. (Understand that, if your child is in the hospital on a weekend, you are exempt from that obligation.) Try different types of prayers and times of the day when prayer might work for your hectic schedule, and then develop a routine around the one that fits best for you. If Eucharistic Adoration is available to you, schedule some time for a Holy Hour. Don’t be ashamed to put your child and your family on your parish’s prayer chain.
Stay connected with your spouse
Up to 80 percent of married couples who have kids with special needs end up divorced, so nourishing your marriage is never more critical than following a serious diagnosis. Schedule regular time with your spouse. Plan a weekend trip, couples retreat, or a one-day outing. If you both need counseling, don’t be afraid to pursue it immediately instead of as a last resort.
The National Catholic Partnership on Disability’s website — NCPD.org — features webinars, YouTube instructional videos, advocacy programs, ministry models, catechesis, and ministry-specific resources. This is the perfect place to start when your child receives a diagnosis of a disability.
Check out your diocese’s website to determine whether there is an office or a ministry for either special needs or disabilities.
Navigating Deep Waters: Meditations for Caregivers by Jeannie Ewing and Eileen Benthal (CreateSpace, 2015)
From Grief to Grace: The Journey from Tragedy to Triumph by Jeannie Ewing (Sophia Institute Press, 2016)
Handbook for Adaptive Catechesis: Serving Those with Special Needs by Michele E. Chronister (Liguori Publications, 2012)
Faith, Family, and Children with Special Needs: How Catholic Parents and Their Kids with Special Needs Can Develop a Richer Spiritual Life by David Rizzo (Loyola Press, 2012)