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Having Children With Disabilities Transformed Me

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I always expected I would get married and have kids one day. I expected we would live our “normal,” middle-class life with family dinners and a few trips to Disney World. I expected to be happy with the life we made for ourselves and our children.

I was surprised when my first son, Joshua, was diagnosed as an infant with a bicuspid aortic valve. Having two flaps covering the heart valve instead of the typical three is not a major condition for a child, who just sees a cardiologist every other year and takes antibiotics for dental visits and other procedures to protect his heart from infection. He has no other physical restrictions or limitations, but at his 5-year-old cardiology appointment, I was surprised again to hear that his heart is now leaking blood back into his heart. The summer before he started kindergarten, he was diagnosed with a chronic illness.

When my other son, Levi, experienced a hypoxic ischemic event during birth, I was so surprised I thought I was dreaming. I felt like I was watching a movie of someone else’s life as the neonatologist explained what happened during my emergency c-section: his heart rate decelerated, he was born unresponsive so was resuscitated and transported to a nearby children’s hospital, his brain had been badly damaged. He received cold cap therapy to simulate hypothermia to his brain to reduce the swelling and allow it to heal. He spent 17 days in the newborn intensive care unit, and when we brought him home, he had failed his newborn hearing tests, was diagnosed with swallowing dysfunction (dysphagia), and was not expected to talk, walk, hear or see.

I accepted having a child with major disabilities, so I didn’t expect that Levi would learn to walk, and then run, and then talk. Levi wears blue braces on his feet to correct his one ornery “pigeon-toed” left foot, but he is determined to keep up with his peers and big brother. He receives some occupational therapy, physical therapy and speech therapy at preschool, but he is exceptionally bright and strong and skilled. I never expected that raising a child who is so fearless and determined would grow me into an adult who is learning to be fearless and determined. I didn’t expect to become so informed about cerebral palsy, therapy, dysphagia, or IEPs, but you can expect that children we raise will in turn raise us into the parents they deserve.

There is a kind of cliché that people like to say: “God only gives special children to special parents,” but of course we know this isn’t true. All kinds of parents give birth to children with disabilities: rich ones, poor ones, weak ones, strong ones.

Maybe other people go into parenting with the expectation that their children may one day be diagnosed with a heart condition, ulcerative colitis and cerebral palsy — but I didn’t. But I also didn’t expect that having children like mine would create in me a person who didn’t exist before.

Becoming a mother is always a transformative experience — our hearts become softer, our priorities change and we can’t believe our hearts can love something as deeply and sacrificially as we do for our children. When you have children with disabilities, you should expect the same. You can also expect to look into their faces and see a future so bright it stings your eyes and stirs your heart to blaze every trail you can with them. You can expect victories and triumphs that swell you with the pride you imagine seeing them hit a home run or graduating from college. You can expect that every part of your life will change, but it can be deeper and wider in the experiences that matter the most: strength of heart.

Originally published: March 14, 2018
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