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Learning to Live With my Child’s Chronic Illness

Learning to Live With my Child’s Chronic Illness

Life seemed to stand still when Bethany was first diagnosed. It really bugged me that all around me family, friends, and strangers were scurrying about, carrying on with their lives as usual. Didn’t they know that there were seriously ill children in the world? How dare they! I’d sadly and wearily peer out of our hospital room window, watching the cars and trucks speeding down the highway in the distance. I’d see people walking down the sidewalks, living their lives as usual and wonder why this horrible thing was happening to my precious baby girl. Of course, being shut up and isolated in a hospital room, exisiting on little to no sleep, and having no one to talk to except doctors and nurses for months on end only served to exacerbate the issue.

After Bethany finally became well enough to go home, I assumed life would eventually return to normal. But how could it really? My daughter was permanently disabled. Life would never return to normal, but we would eventually find and begin to function within the parameters of a new normal. I recall thinking how ridiculous my friends and family were to complain and argue about such trivial, and meaningless issues as what color paper plates to use for Thanksgiving Dinner, whether so and so’s dress was too revealing, or how terrible their child’s runny nose was. Their problems were nothing compared to ours. My daughter was experiencing excrutiating pain, nearly dying every day from some new and rare complication associated with brain tumor surgery, having near constant seizures, and learning to adjust to a new way of life as a person with disabilities.

While I can’t tell you that I never get jealous of healthy families any more, I can say that eventually life did begin to settle down a bit. We grew accustomed our new rhythm and adjusted to our new roles within the family. We developed a routine that worked for us. This change didn’t just happen overnight though. Each one in our family had to work long and hard to achieve our own semblance of peace with what had happened to us.

Some of the things we did to find that peace were as follows:

• We attended support group meetings. Talking through issues with others who understood what we were going through and knew exactly how we felt was very helpful in the healing process.

• We educated ourselves and our other children about our daughter’s condition. We learned how we could best help her reach her potential and live a happy fulfilling life.

• We sought both practical and financial help from agencies for the disabled. This help included service coordination, respite care, therapies, and specialist consultations for our daughter, medical assistance, and special equipment such as a wheel chair and iPad, and even sign language classes.

But what really helped me personally get over my feelings of jealousy or that no one elses crisis could possibly be worse than ours was one day just realizing that even though someone elses crisis may seem trivial or even ridiculous to me, theirs is just as devastating and traumatic to them as my daughter’s chronic condition is to me.

It wasn’t until I was able to be compassionate, kind, and understanding to others facing problems in their lives that I was able to get over myself, and stop feeling superior because of going through such a catastrophic experience that I was finally able to come to peace with our new normal!

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Faith, Hope and Love

Meet Our Blogger

My family has been through the tragedy, trials and ultimate triumph over childhood brain cancer. My daughter Bethany, underwent emergency surgery to remove a brain tumor in 2000 and has since been diagnosed with multiple permanent debilitating disabilities. Now more than ever before, life is a daily exercise in tolerance, patience, unconditional love, faith and reliance on God.

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