Shining a Light on “Survival Mode”

If Candice could share one thing she wishes people knew about parent caregiving it is that she’s “always in survival mode.” As the mother of five children with complex medical needs, Candice knows far more intimately than most of the toll caretaking has on a parent.

“My brain never shuts off. What nobody understands is that you’re so exhausted you can’t think straight.”

-Year of Sunshine mom Candice Gentry on caregiving

As part of our spotlight on caregiving, we have begun a multi-part series featuring families who have or are currently participating in our Year of Sunshine. Caring for children with complex medical needs impacts caregivers’ emotional, mental, and physical health. These stories will shine the light on the unique challenges these families face so that communities can better provide empathy and practical support. We will also be hosting the Memphis premiere and virtual screening of the documentary, UNSEEN: How We’re Failing Parent Caregivers and Why It Matters.

Meet the Candice’s Family

Candice and her husband of 22 years, Rodney, live in Virginia, with their children Sarah, Matthew and Joshua, Noah, and Hannah. Rodney has served with the Marine Corps for 29 years.

Big sister Sarah is the creative artist of the family. She loves to crochet and is interested in studio art. A very bright teen, her life is complicated by an auditory processing disorder that can make understanding others challenging.

A combination of POTS (Postural orthostatic tachycardia syndrome), Ehlers-Danlos Syndrome (EDS), and Chronic Fatigue Syndrome leave Sarah exhausted and feeling cold much of the time. Eighty percent of people with EDS have POTS (but not the other way around).

Like many teens, identical twins Matthew and Josh enjoy playing Minecraft. Matthew is involved in archery and theatre. Josh prefers swimming and soccer. The boys have created daily exercise routines to alleviate symptoms of POTS and EDS. All three teens receive regular chiropractic treatment to treat their joints that move out of place due to EDS. Both Matthew and Joshua are high-functioning on the autism spectrum.

Growing a Family of Seven

Candice, Rodney, Sarah, Matthew, and Joshua had to travel the ocean to meet their youngest family members. In 2012, while stationed in Okinawa, Japan, they experienced an incredible sense of community within their church, which Candice compared to the Acts 2 church. They ate and prayed together, sharing what they had. And they were also like-minded, with several families heeding the call to adoption. Soon Candice and Rodney sensed God was calling them to adopt from Japan.

After a two-year wait, they were matched with a baby named Noah, who was born with a hole between his heart’s chambers that required a surgical repair at two-months-old. Noah officially joined their family three months later. When Noah was 19 months old, “surprise baby” Hannah Joy joined their family (also via adoption) when she was one-month old. (Although maybe less of a surprise for Sarah, who had been praying for a sister.) Both Noah and Hannah were born with Down Syndrome. Hannah has additional medical complexities brought on by autism, ADHD, and infantile glaucoma, which has left her visually impaired.

Hannah is described as the “ray of sunshine” in the family. She enjoys basketball, drawing, and animals. Playing recreational sports can be challenging as teams tend to be grouped by age, and Hannah is smaller. Rule-following is also a barrier for Hannah cognitively.

While his social anxiety and oppositional defiant disorder (ODD) can make activities outside the house a struggle, Noah is the life of the party at home. Known as the family comedian, he enjoys making videos and providing lots of laughter.

Feeling Alone in a Full House: Longing for Community

A household of seven is bustling with activity. However, when asked to choose one word to describe her experience with caregiving, Candice volunteered, “loneliness.”

In one particularly hectic season, she was shuttling her children to 35 weekly medical and therapy appointments. On other days she’s on the phone for 45 minutes to make one appointment. These demands don’t leave her time or energy for the community that her heart needs.

“Every moment of our day is filled with taking care of our children,” she says. “You desperately want someone to talk to. To vent. But who can you talk to? Everyone is so busy.” Candice adds that she can go weeks or months without speaking to someone face-to-face outside of her household who isn’t a doctor or cashier. Even simple conversations in public can be dangerous when you have a child who can’t perceive danger and frequently runs away.

In addition to her schedule, her children’s uniqueness can be a barrier to friendship and participation in activities. While her teens attend a homeschool co-op, realities like Noah’s social anxiety and Hannah’s visual impairment and verbal limitations make it challenging for them to participate without Candice. She says it’s harder to make friends as a mother of children with Down Syndrome and Autism.

In her experience, people are reluctant to invite larger families to their homes. However, she feels ill-equipped to host guests when she struggles to find time to keep up the house.

Military Life Can Compound Isolation

A mere ten days after Hannah joined their family, Rodney deployed to Thailand for two months. Candice was thousands of miles from any family with five children younger than ten, two of whom couldn’t walk.

They have moved with the Marine Corps nearly every three years. The realities of the transient military add extra complications to parenting children with complex medical needs. “How do you find friends or a support network when you’re coming to an area in survival mode?” she asks.

Some of the ways being a military spouse adds to her isolation include:

  • When one parent is deployed, the other is often left behind to care for the children.
  • The active duty schedule can be unpredictable.
  • There’s little to no familial support when you live on the other side of the country or world from extended family.
  • It may take two to three years (and countless hours of research) to find medical specialists, therapists, and hospitals equipped to care for their children. Then it’s time to move again.
  • Civilian families don’t always want to invest in relationships with families who will be moving in a few years.
  • If your children have dietary issues and social functions involving food can make your child uncomfortable, which can limit the ways you can meet people. It can also make grocery shopping in a new city difficult.

Another practical issue for military families is that the salary often does not support the needs of a medically-challenged family, especially when living in an expensive area.

Caring for Yourself When You’re Always Caring for Others

The stress of caregiving can take its toll on families. Candice describes the experience of long-term caregiving like this:

“Mundane tasks became overwhelming: paying a bill, doing the yard work, scheduling an appointment, or making dinner. You are in decision overload.”

“Any task can feel like climbing a mountain. You crave a break from it all. You crave normalcy. Now imagine your anxiety, that stress load, and that exhaustion lasting not weeks, not months, but years.”

Candice Gentry

In her experience caregivers suffer from health problems by year two of being in survival mode. “Our health issues further complicate everything. Now we are going through all these things but while we are in serious pain,” Candice shares. “However, we don’t have time to seek medical help, as we are putting their children first, and won’t get help until it greatly impacts our quality of life.”

The needs of her children can make it seemingly impossible for Candice to schedule her own appointments to address her health.

A survey of caregivers by the American Association of Retired Persons (AARP) confirms her experience illuminating the mental, financial, and physical impact on their health.

The Gift of Joy in the Moment

Candice’s hope for all of her children is that they are happy, healthy, and following the Lord.

One of the unique gifts of raising her children is that her family appreciates things others don’t. Some of those milestones include Hannah’s learning to drink water without choking or saying a new word. She says that a slower-paced life means more joy in the moment. “You don’t have time for superficial things,” Candice adds.

The Gentrys spend one to one and a half hours each evening studying the Bible and praying. It’s a time when they check in together and share laughs.

She finds respite in reading books with her teenagers and exploring nature, especially hiking.

Offering Help: How One Word Can Make a Big Difference

When asked how people in her community can serve her family Candice emphasized that “how you phrase the question is important.” Asking “How can I help you?” rather than “Can I help you?” makes it easier for caregivers who are reluctant to accept help.

She adds that she appreciates specific offers such as “Can I bring you dinner on Wednesday? Or can we take your teens to youth group?”

Because one of her children is non-verbal, childcare she can trust is challenging. It would help the Gentrys if people would pick up her groceries or transport her teens to activities so that she doesn’t have to shuttle Hannah and Noah to everything.

When asked how people can pray for her family her first response was “peace.”

(Read: For more ideas on how you can help families with children with serious illnesses or medical needs check out 5 Ways You Can Help Families Facing Serious Illness and Why You Should Never Underestimate the Power of Kindness.)

A Sprinkle of Sunshine

While in Okinawa, Candice met fellow homeschooling mom Dawn who participated in a Spreading Sunshine-sponsored bucket list trip with her two daughters. Their relationship piqued Candice’s interest in volunteering with Spreading Sunshine. However, that conversation led to her family becoming recipients of a “Year of Sunshine.”

Candice’s family receives monthly boxes that have “really cheered up the family.” They enjoy gathering around the boxes to see what surprises they hold, such as sensory toys and personalized cards. And Candice has appreciated having a Spreading Sunshine prayer warrior dedicated to interceding for her family.

UNSEEN: A Film Shining a Light on Caregiving

Spreading Sunshine will be hosting the Memphis premiere of UNSEEN: How We’re Failing Parent Caregivers and Why It Matters, an award-winning documentary that tells the story of a family caring for their child with profound disabilities. The film highlights the isolation and challenges parent caregivers face, as well as the lack of accessible resources and support. This film presents an opportunity to educate the community and advocate for parent caregivers. If you’d like information on purchasing tickets or sponsoring the Greater Memphis area screening on November 4 at Highland Church of Christ click here for more information. There will be a resources expo, reception, and children’s programming.

If you’re not in Memphis or are unable to attend the in-person screening, you can purchase tickets for a virtual encore presentation on November 5th and 6th here.