by Jennifer Lendvai-Lintner
When she began sharing about her journey of raising a son with a rare condition on social media and by writing, Melissa Schlemmer discovered that not only was it the outlet she needed, other parents needed her words, too.
“The more I shared, the more a weight lifted,” Melissa says. “I felt seen and heard, and I also was starting to help other parents in similar shoes.”
Much of Melissa’s writing can be found on her blog The Special Mom, which she began in July 2014, when her now eight-year-old son Christopher was 18 months. Christopher has a condition called congenital disorder of glycosylation. Because of this, Christopher is developmentally delayed and lives with medical complexities, which include hearing loss, vision abnormalities, cerebellar atrophy, hypotonia, gastronomy tube dependence, absence of speech, seizure disorder and more.
Christopher falls in the middle of Melissa’s lineup of three boys, plus her “bonus” adult son. It’s a busy household, and Melissa’s social media lets followers glimpse just that. Melissa’s Instagram account—@ourrealrarelife—overflows with images of outdoor exploring, reading, messy play, therapies, baking, and more; it’s a colorful, creative, and sensory-rich destination. She says, “I have always loved making things and doing crafts. Having kids just gave me excuses to do them more often.”
Photo courtesy Melissa Schlemmer
Melissa Schlemmer with sons, from left, Alexander, Theodore, and Christopher.
[Image description: Melissa Schlemmer sits with three sons on a tree stump in an outdoor setting.]
Many of the activities serve a dual purpose; the more Melissa learned about Christopher’s sensory processing disorder, the more those crafts and activities became therapeutic.
“Christopher doesn’t love anything on his hands or to hold objects for very long, so most of the messy play or crafts we do are therapy disguised as fun,” Melissa explains.
And while the activities are beneficial for Christopher, don’t count littlest brother Theodore out of the fun.
“With Theodore, messy play or anything with water usually buys me an hour! I’ve learned to embrace the mess,” says Melissa.
When she isn’t precariously maneuvering a field of Lego pieces or up to her elbows in colored shaving cream, Melissa carves out time for writing, which she says can be both cathartic and validating.
“When I feel alone, worried, or I’m having a particularly hard time, I write it all down. Then I share it with the world and pray that I’m not alone,” she says.
Caring for Christopher is intensive, and extreme circumstances are part of the journey. In addition to writing, what also helps in difficult times, Melissa says, is reminding herself that whatever is happening presently will someday be a memory.
“I look back at all of the hard days and recall how I had no idea how we’d survive. Sleepless nights, hospitalizations, illnesses, all of it. And now, those moments are memories. Sitting on the shower floor crying endless tears while Christopher was in the ICU—a memory. Worried about how we would do a feeding tube—a memory. Our oldest recovering from surgery after an open fracture—a memory,” Melissa says. “The hard times won’t last forever and you will get through them. Even if you have to take one minute at a time or an hour at a time. I promise you, someday you’ll sit down, and they’ll be memories.”
It’s insights like this with which Melissa’s readers connect. Melissa says she discovered that much of what she shares in her writing isn’t unique to her and her situation; this motivates her to continue writing.
She says, “I was saying what other parents were feeling, too, and so I kept writing, with hope that none of us will feel alone.”
By sharing what her life is like in the midst of rare circumstances, Melissa has created valuable community for other parents like herself. The ups, the downs, the mess, and the magic—it’s all part of a real, rare life.
Photo courtesy Melissa Schlemmer
Melissa Schlemmer with son, Christopher.
[Image description: Melissa Schlemmer sits with her son Christopher on her lap. They are on a couch, heads turned toward each other smiling.]
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