{"id":12809,"date":"2022-09-20T03:40:48","date_gmt":"2022-09-20T03:40:48","guid":{"rendered":"https:\/\/spreading-sunshine.org\/?p=12809"},"modified":"2022-10-20T22:00:49","modified_gmt":"2022-10-20T22:00:49","slug":"shining-a-light-on-survival-mode","status":"publish","type":"post","link":"https:\/\/spreading-sunshine.org\/blog\/shining-a-light-on-survival-mode\/","title":{"rendered":"Shining a Light on \u201cSurvival Mode\u201d"},"content":{"rendered":"\n

If Candice could share one thing she wishes people knew about parent caregiving it is that she\u2019s \u201calways in survival mode.\u201d 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.<\/p>\n\n\n\n

\u201cMy brain never shuts off. What nobody understands is that you\u2019re so exhausted you can\u2019t think straight.\u201d<\/p>-Year of Sunshine mom Candice Gentry on caregiving<\/cite><\/blockquote><\/figure>\n\n\n\n

As part of our spotlight on caregiving, we have begun a multi-part series featuring families who have or are currently participating in our <\/em>Year of Sunshine<\/em><\/a>. Caring for children with complex medical needs impacts caregivers\u2019 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.<\/em> We will also be hosting the Memphis premiere <\/a>and virtual screening of the documentary<\/a>, UNSEEN: How We’re Failing Parent Caregivers and Why It Matters.<\/p>\n\n\n\n

Meet the Candice’s Family<\/h2>\n\n\n\n

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.<\/p>\n\n\n\n

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.<\/p>\n\n\n\n

A combination of POTS (Postural orthostatic tachycardia syndrome)<\/a>, Ehlers-Danlos Syndrome (EDS)<\/a>, 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).<\/p>\n\n\n\n

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.<\/p>\n\n\n\n

Growing a Family of Seven<\/h2>\n\n\n\n

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.<\/p>\n\n\n\n

After a two-year wait, they were matched with a baby named Noah, who was born with a hole between his heart\u2019s chambers<\/a> that required a surgical repair at two-months-old. Noah officially joined their family three months later. When Noah was 19 months old, \u201csurprise baby\u201d 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.<\/p>\n\n\n\n

Hannah is described as the \u201cray of sunshine\u201d 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.<\/p>\n\n\n\n

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.<\/p>\n\n\n\n

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Feeling Alone in a Full House: Longing for Community<\/h2>\n\n\n\n

A household of seven is bustling with activity. However, when asked to choose one word to describe her experience with caregiving, Candice volunteered, \u201cloneliness.\u201d<\/p>\n\n\n\n

In one particularly hectic season, she was shuttling her children to 35 weekly medical and therapy appointments. On other days she\u2019s on the phone for 45 minutes to make one appointment. These demands don\u2019t leave her time or energy for the community that her heart needs.<\/p>\n\n\n\n

\u201cEvery moment of our day is filled with taking care of our children,\u201d she says. \u201cYou desperately want someone to talk to. To vent. But who can you talk to? Everyone is so busy.\u201d Candice adds that she can go weeks or months without speaking to someone face-to-face outside of her household who isn\u2019t a doctor or cashier. Even simple conversations in public can be dangerous when you have a child who can\u2019t perceive danger and frequently runs away.<\/p>\n\n\n\n

In addition to her schedule, her children\u2019s uniqueness can be a barrier to friendship and participation in activities. While her teens attend a homeschool co-op, realities like Noah\u2019s social anxiety and Hannah\u2019s visual impairment and verbal limitations make it challenging for them to participate without Candice. She says it\u2019s harder to make friends as a mother of children with Down Syndrome and Autism.<\/p>\n\n\n\n

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.<\/p>\n\n\n\n

Military Life Can Compound Isolation<\/h2>\n\n\n\n
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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\u2019t walk.<\/p>\n\n\n\n

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. \u201cHow do you find friends or a support network when you\u2019re coming to an area in survival mode?\u201d she asks.<\/p>\n\n\n\n

Some of the ways being a military spouse adds to her isolation include:<\/p>\n\n\n\n