When Life Is Not as It Should Be
When life is not as it should be, whether the cause is a global pandemic or a child’s diagnosis, we have a choice to make. As our hearts break and our faith is tested, we have to decide to respond from either a short term or long term perspective.
In 1959 my parents were in that “when life is not as it should be” place.
They were not yet 30 when Dad was diagnosed with multiple sclerosis. People gave them plenty of support, from a woman advising Mom to go on welfare to co-workers taking out a life insurance policy for Dad. Somehow, in the midst of conflicting advice and mounting fear as Dad’s health deteriorated rapidly, my parents chose a long term perspective. To that end, they set two goals they felt were best for the long term well-being of their children.
First, they decided to keep Dad in our home as long as possible so their kids could grow up around their father.
Second, they would provide the support their kids would need to graduate from high school and go to college.
The goals they set drove every short term decision they made for two decades. To this day my siblings and I, as well as our children and their children, are benefiting from those long term goals.
In 1982 my husband and I landed in that “when life is not as it should be” place.
Our newborn was diagnosed with a birth defect. My husband was taking a shower at a friend’s house when the doctor relayed the diagnosis to me at the hospital. Our baby needed to get to a major medical center for immediate surgery to save his life. When my husband returned and had time to absorb all that had changed in his short absence, we set long term, eternal goals for our son and for us.
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Jolene Philo is both parent and daughter of loved ones with special needs and disabilities, as well as a former educator who worked with children for 25 years. She’s written several books about caregiving, special needs parenting, and childhood PTSD, including the recently released Sharing Love Abundantly in Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilties, which she co-authored with Dr. Gary Chapman. She speaks internationally about caregiving and parenting children with special needs and blogs at www.DifferentDream.com. Jolene and her husband live in central Iowa.
Churches must welcome those with disabilities so families are prepared for hard calls like one we recieved. “We’ve decided to stop dialysis.”
One thing I know is true when the storms of nature or caregiving arise. By the grace of God, we’ll get through this. And so will you.
Even a little faith can lead to healing as this story of Jesus, kids with special needs, and their parents shows. God simply wants us to ask.