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A close-up of cheerful little girl with Down syndrome.

A Family Matter: Navigating Health Conditions

It takes a village to raise a child, so they say. And that, at least in my experience, has proven to be true. The collection of people you share your time with … your life with … your days with … have (consciously or not) been invited into the lives of your children and will shape the various paths they take toward becoming adults.

It’s easy to underestimate, but if you spend a significant amount of time in a child’s life, they are looking at you, listening to you, learning from you, and taking cues about themselves from you and how you treat them. To them, you are larger than life. Your “grown-up-ness” is mesmerizing. The independence and control over your life and your decisions is something they are aspiring to, and all the while, trying to figure out.

This is true for healthy children. You know, those who entered this world with a stress-free delivery, those who slept through the night as infants, who began teething right on time. Those whose skin doesn’t need lotion, whose eyes don’t need glasses. They rarely sniffle and never miss school. More than 88 percent of American children, ages 0-4, are considered to be in “excellent” or “very good” health. If you’ve been lucky enough to be chosen to be part of their lives, they need you.

But if you’ve been given the honor of contributing to the lives of the other 11.8 percent, they need you more, and perhaps differently than you think.

My nephew, Cash, was born with severe cleft lip and palate. He’s had a half dozen surgeries in just four little years of life. In addition, he’s allergic to almost every food on the planet and has allergy or eczema-related skin issues daily.

I’m lucky enough to spend a few hours every week with Cash, often more. And, in my opinion, my job with Cash is simple – "Make sure he doesn’t know that you know.”

In every single interaction with my nephew, Cash, that’s all I’ve ever tried to do. You see, his parents, grandparents, doctors, specialists, speech pathologists, and teachers – they’re handling his health issues. They’re helping him through those struggles. They’re teaching him about himself, respectfully and effectively, in private.

My job, as his uncle, has been simple. Smile at him. Look him in the eye. Include him. Invite him. Hug him. Kiss him. Wrestle with him and don’t take it easy. Teach him to swim. Catch him when he sinks. Put him in the ballgame. Put him on the bench. Encourage him. Reprimand him.

In his little eight-man band of cousins, I treat Cash the same as the others. I refuse to give him a crutch that he doesn’t need.

Inside, sometimes, I feel differently. There are days my heart breaks over his struggles. Other days, I’m silently inspired beyond belief by his strength. But he doesn’t need to know all that right now. That’s not my job.

So, for now, I’ll continue to make sure he doesn’t know … that I know.

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About Craniofacial Parent Advisory Council

About Craniofacial Parent Advisory Council

CHKD's Craniofacial Parent Advisory Council consists of current and former patients and family members who have experienced care at our Cleft and Craniofacial Center. Council members provide feedback to ensure the craniofacial center consistently offers the best care possible. They also directly support other patients and families undergoing treatment. All members undergo an application process before being selected for the council.