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The Moment I Realized Apert Syndrome Was Here to Stay


The first two weeks after Sarah’s birth, I was swimming in a sea of denial. It was so deep, however, I denied my denial. Every morning I would wake up and wonder, “Maybe this has all been just a bad dream.”

I prayed she would be healed of Apert syndrome. I asked our lives would resume to a steady, predictable rhythm rather than the chaos and uncertainty that often accompanied it. For a time, it seemed maybe Sarah would just need a few surgeries, and then we could start a “normal” life — a typical life devoid of surgeries, pre- and post-op appointments, paperwork, phone calls, more paperwork, bills and therapy sessions.

Then one day, it hit me that Apert syndrome was here to stay. No, it wasn’t a flash of the proverbial lightning bolt that jolted me into this reality. Instead, it was like a quiet acceptance settled upon my heart, and at last, I was OK with the fact that Apert was going to be a lifelong companion.

Jeannie's daughter smiling in their yard
Jeannie’s daughter.

I was sitting in the waiting room while Sarah was in her weekly occupational therapy session. Lost in my thoughts, it occurred to me that I no longer viewed Apert syndrome as an unwelcome intruder. I didn’t immediately think, “Apert” when I saw my own daughter or others like her. Instead, I was beginning to see the person behind the diagnosis, the beloved face of my daughter. It was a revelation that swept me into an oasis of relief, and peace settled upon my soul.

Life with Apert syndrome isn’t so unnerving or daunting when one can allow it to be the constant presence of a friend. I won’t say Apert is the kind of friend I’d choose, but since it arrived in our lives and is here to stay, I’m learning to see it as more of a comrade than enemy.

Jeannie's daughter by the water
Jeannie’s daughter.

It’s really a matter of perspective, as is anything that is difficult or uncertain in life. We can choose to view challenges as obstacles, or we can learn to see them as opportunities. 

Sarah isn’t aware she is “different”; she only sees opportunities. Sarah doesn’t know she has Apert syndrome yet. Everything she’s experienced in her little life of three years has been typical to her. She doesn’t know what it feels like to have fingers that move with ease. She has no basis of comparison for her shorter arms or cute little fused toes.

Her body has become her haven, and I’ve learned to see it that way too.

I think we all have to remember that every human being is in some way, different. When I was a kid, I was called “four eyes” because of my coke-bottle glasses. I then earned the nickname “brace face” when I adorned those lovely metal braces on my teeth. I grew up hating the fact I was seen as an anomaly among my peers because of my introversion and “ugly duckling” appearance, but now that I have a daughter who is visibly different, I am proud of the little girl I once was — who was shy, awkward, afraid of herself.

Living with Apert syndrome as a friend, rather than foe, means I see myself differently. I am no longer ashamed of being different, because I know how beautiful each person’s gifts are to the world. One person may be prodigious at empathy, while another is perceptive mathematically. One may be a musical phenomenon, while another has a brilliant engineer’s mind.

Even mundane tasks, such as sweeping floors or organizing shelves, can be done with incredible joy, contentment and finesse. Apert syndrome has taught me there is no such thing as superior or inferior when it comes to people. There are no menial jobs or talents, because even small things can be done with great love.

That’s what living with Apert syndrome reminds me each day – that love is the essence of this life. Perhaps Apert has become more of a family member than a friend lately, because I’ve moved from accepting it to thanking it for what it has taught me and what lessons it has to offer the world, too.