That child could have been me, I thought as I read through one of the responses to my survey about stress and compassion fatigue in caregivers. The respondent said her sixth-year-old child lived with intellectual delays caused by an untreated Rh factor blood disorder. The mother also said that she is still her child's primary caregiver. With a gasp, I realized the implication of what I had just read.
I am 62.
I was born with Rh factor blood disorder shortly after the disease was discovered.
My disease was detected too late for newly developed treatment methods.
The doctor said my parents would have to wait and see how the disease would affect my development.
Most certainly, that child could have been me.
A chill ran down my spine.
My eyes filled with tears as I imagined this elderly mother, who has to be in her late seventies at the youngest, taking care of her aging child. She's been a caregiver for sixty years, and she must be wondering who will care for her child when she no longer can.
I contemplated how Rh factor affected my life. For years I struggled with low muscle tone and poor coordination. I shunned physical sports and became a voracious reader, a necessary first step in becoming a writer. The direct line between Rh factor and my present life renewed my determination to redeem the time God has given me. (Ephesians 5:16)
Had God orchestrated my life or yours differently, that child could have been me or you. He has set each of us, including the sixty-year-old adult with intellectual delays caused by Rh factor, on individual life paths. Furthermore, He is completing His eternal purposes through each of us. God calls us to redeem the time He has given us and our children with special needs. Here are four ways to do so.
Use what you've been given. Some of us live with disability or disease. Some of us are caregivers. Some of us have lost children. Some of us have children restored to health. You can't change what you've been given, but you can control how you respond to it. When you believe that God imbues each life with eternal purpose and meaning, each day becomes an opportunity to use what He's given to bring Him glory.
Ask God to reveal His purposes for you and your child on earth and for eternity. Earnestly pray for the guidance of the Holy Spirit and then read Scripture. The New Testament gospels—Matthew, Mark, Luke, and John—are a good place to start. They are populated with people who have disabilities and special needs. Pay special attention to how Jesus interacts to people with disabilities and caregivers. What does He say to them? How does He treat them? What do His responses tell you about how He valued them, what His purposes were for them, and what they are for your children and for you?
Create a support network for you and your child. Caregiving duties are consuming and creating a support network is challenging. But you can't be the only person in charge of your child's care. You need a support network of encouragersso you will be able to care for your child for a long, long time. Even so, your child will most likely outlive you. Therefore, your child also needs a support network of friends, extended family, and church family who will love your child when you can't. You must start inviting people to be part of your child's lifenowso life will be full and rich when you are gone.
Prepare for your child's financial future. Thankfully, parents are more aware of special needs trusts than they were 5 or 10 years ago and are implementing them sooner. The process of creating and funding a special needs trustis complicated and requires careful consideration, so begin researching the subject long before your child turns 18.
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. The book she is working with Dr. Gary Chapman about using the five love languages in special needs families will be released in August of 2019.
