Apert Syndrome, You Are So Limited


Dear Apert Syndrome,

You are so limited.

You made your grand entry into our lives uninvited and unannounced. You showed up in one of the most intimate and exciting moments parents experience, seeking to steal from us. And you did. You stole our breathe. But you did not steal our love. You are so limited.

In the NICU you flexed your great muscles trying to show us just how big and strong you really were. With each new medical term, new specialist and new insurance question, you sought to overwhelm and overpower us. And you did. For a moment. But it didn’t take long for us to realize all this new information was just that — new information. And so we read and we studied and we had countless meetings, made infinite phone calls and sent dozens of emails. We became knowledgable. We were equipped. We made a plan. Did you really think you could hold us down? You are so limited

You thought the Internet would be your ally. You thought if you could bombard us with pictures of things we’d never been exposed to, we might crumble. What you didn’t expect was for us to see beyond the pictures to the stories. Stories of people being loved and loving, stories of strength. The tool you hoped would cut us down has provided us support groups and a whole new world of connectivity and help. You are so limited.

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Then you really got nasty. You called in all your buddies and tried to bully us. Month after month you showed us just how many friends you had, how many areas of our son’s body you and your mob could attack and how nuanced and random you could choose to be. Respiratory, vision, hernia, the weirdest pylorus known to man, mal-rotated small intestines… to name a few. You and your buddies kept us and our son in the hospital for months, much of that time separated from his sister. What you didn’t expect was for us to have more friends. Better friends. And an incredible family. They cleaned our house, cooked our meals, sent money to help, took care of and cherished our daughter, took day and night shifts at the hospital to provide relief. They checked our mail, did our lawn and they prayed for us. They prayed hard. You and your gang thought you were big and bad, but our posy turned out to be stronger. You are so limited.

You planned to isolate us, didn’t you? At the very least you must have thought you could separate our boy, single him out. And while he may stand out, he’s far from alone. Did you know his big sister, just 16 months older, doesn’t even realize this is not “normal?” When she plays with her baby dolls, sometimes they throw up and she asks for a napkin and wipes them up and then wipes the floor. And when I’m listening to her brother’s lungs through the stethoscope that I have become quite proficient with, she lines up for me to listen to her — she doesn’t think it’s strange, she just thinks that’s something good moms do for their kids. She was barely 2 when she learned how to turn off the machine feeding him thru his g-tube. And the two of them giggle and they hug, and they can’t wait to see each other in the morning. As for friends — he has lots of those too. Kids and adults of all ages, shapes and sizes. You may have hoped to shrink his world, but what you’ve actually done is expand others’ worlds. You are so limited.

Please don’t think I’m treating you flippantly. You have your territory. You automatically come with surgeries, therapies and in many cases, traches, adaptive technologies, delays, etc. You’ve brought name calling to others, and I’m sure you will bring teasing and taunting to my precious son. You do change how our family’s time is spent, and you do touch every relationship any of us is in. You keep us in places we want to leave and keep us from places we want to go. There are things my son hasn’t done yet that many of my friends’ younger children do easily. There may be some things he or I never experience. You’re without a doubt a force to be reckoned with, and I respect that. You’ve caused us to rewrite our standards, to change our expectations and learn to navigate within new boundaries. But rewrite, change and learn we have. You’ve won a few days here and there, but love has, is and will win the war. You will affect my son every day for his entire life, but make no mistake — you’re so limited.

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