Sweet joy in the middle of goodness was an unexpectedly delightful part of our trip to an Arizona fruit orchard in January. I walked around in shirtsleeves and sandals, admiring trees laden with yellow and orange fruit. I breathed in the tang of fresh citrus. I sampled variety after variety of grapefruit, oranges, lemons, and limes with greedy joy.
The orchard was heady fare for a midwesterner eager to escape an Iowa winter for a week. When it was time to leave the orchard, I didn't want to go. And I didn't want to leave Arizona's warmth and sunshine when our vacation ended.
Photo credit: Max on Unsplash.com.
Even so, part of me was ready to return home and resume interviews with parents raising kids with special needs and disabilities for a book proposal about stress and compassion fatigue in caregiver.
I was ready to return to the sweet joy of hearing their stories.
The sweet joy of witnessing their pride in their children.
The sweet joy of crying with them in their grief.
The sweet joy of learning from their wisdom.
The sweet joy of being in the middle of goodness incomprehensible to those not part of our world.
Talking to these families, on the phone or in video chats, has been as sharp and delicious as an orange eaten in a citrus grove. Our conversations take me back to my days as a caregiver, and we connect as only parents of kids with disabilities and special needs can. As they describe their lives, common threads, common needs, and common desires emerge. Here are 5 desires many parents have expressed.
Caregiving parents want assurance that stress and compassion fatigue is real. They want assurance that what they are dealing with is not all in their heads. They want someone to acknowledge the stress that is taking a toll on their physical, mental, and spiritual health. They want someone to tell them that while what they are dealing with is not normal for the general population, it is normal within the caregiving tribe.
Caregiving parents want to find purpose in life. They want the lives they and their children have been given to have meaning. They want to use their experiences to encourage and support parents of kids who have just received a diagnosis. They want to pay forward the kindnesses done for them when they were exhausted, grieving, despairing, and lonely. They want families to know they aren't alone. They want to point them to useful resources and pass along strategies they've developed. They want to give and not always take.
Caregiving parents need to ask for help. But they don't like asking. Sometimes they don't even know what to ask for because they're too busy plugging holes to think beyond the moment. So know that if a caregiving parent does ask for help, they are desperate. If you've offered to help and they don't take you up on it, take the initiative and call again. If they don't accept your offer, tell them how you will help. As in, "I'm bringing a meal," or "I'm bringing you groceries," or "I'm taking your carpool turn tomorrow." You get the idea. If they still decline, do something anyway. Maybe not the carpool thing without permission. But do deliver a meal or groceries. Scoop their snow or mow their lawn. Bring them their mail.
Caregiving parents need you to understand what a day in their life is like. They need you to understand the complexities of raising a child with special needs and disabilities. They need you to realize that their child is at his or her best when you see their family in public and that life at home is much more challenging. They need you to be aware of the obstacles they overcome just to get out the door. They need you to comprehend their level of sleep deprivation. They need you to imagine a life with 3 therapy appointments a week, 2 doctor appointments, and countless phone calls to insurance companies because that is their life.
Caregiving parents know joy. It's easy to focus on the struggles that accompany caregiving and overlook the joys. But these parents all mentioned joy. The joy of welcoming a new life. The joy of watching a child reach milestones. The joy of being stretched to become resourceful and strong. The joy of creating friendships with others in the disability community. The joy of linking arms to make the world a better place for their children.
Every parent interviewed, no matter the stress and fatigue they live with, talked about joy. They all described their personal, sweet joy in the middle of goodness. This is the goodness that is part of raising a child with special needs. This is the Arizona citrus grove we cling to when caregiving is as uncomfortable as winter in Iowa. And one day, we must remind ourselves when dark winter presses in, this sweet joy in the middle of goodness will be ours again.
Jolene Philo is the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She's also the creator and host of the Different Dream website. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and at Amazon.
