Why Normal is Important

Some of you know my oldest son has Cerebral Palsy; severe spastic cerebral quadriplegia, to be exact. When DJ was almost a year old (in 1988), I began a crash course in neonatal neurology, pediatric developmental therapy, and Children’s Social Services. I embarked upon an eye-opening, life-changing journey to familiarization and exploration of a subculture in which parents of special-needs-children, raise their kids; a world previously unacknowledged by me at age 20. Most new moms don’t need to know what their newborn’s APGAR scores were at birth. We don’t have to know the meaning of terms like ‘periventricular leukomalacia’ or ‘hypoxia’ and how it can relate to hypoxic-ischemic encephalopathy. Most moms don’t worry about contractures in their two-year-old and most never need to raise questions to the pediatric orthopedic surgeon about clonus, dystonia or dysplasia. After all, 99.8% of babies born in the US each year don’t have CP. Most don’t deviate from average developmental expectations. With 18 years of play, speech, physical, occupational, hippo, aquatic and behavioral therapy behind us, and with multiple surgical procedures complete (including releases, lengthening, resectioning and transfers in order to more ‘normalize’ the patient), the big news is, my son has cerebral palsy. Nothing changed. We didn’t “normalize” DJ. He’s deviant. I’ve asked, “what was gained by our efforts?” I’ve asked, too, “what was lost?” Back in 1988, we didn’t always see normalcy in diversity. That idea was just beginning to emerge in mainstream society. In 2018, some of us wonder where normal went. Interestingly, we still valiantly strive to normalize children with physical and cognitive disabilities, granting the word ‘disability’ is becoming increasingly unpopular when applied to children. However, it seems we’ve become slightly afraid to attempt the normalizing of our children born without obviously ‘special’ needs. Somethings Grandpa might’ve called deviant, we call the new normal. When our eyes see clearly the new world our children and grandchildren stand to inherit, the questions of what was gained and what was lost become extremely relevant. What price have we paid to accept what seems to be out of our hands? What have we sacrificed to resist it? Have our efforts been wasted? In the end, will we look back and realize the hours, days and years of work didn’t cure anything? There is no shame in looking back, being able to say, “I did everything I could have done. I gave my all. I did my best.” Whatever the struggle today, do not give up. There’s too much at stake...Normal isn’t what our kids stand to lose, after all. When we demonstrate unfeigned love for each child, by our time and effort invested in him, what we preserved for him is a heritage.