Less than a year ago, Micah and Katy Lillrose’s 18-month-old son stopped walking, and, after an MRI, was whisked off to emergency surgery to remove a tumor that was compressing his spinal cord. Within a week, little Emmett was then diagnosed with a very rare and aggressive brain tumor.
This life-altering event for the Lillrose family led them to return to Katy’s hometown in Boston, where a local medical institute could provide Emmett his best chance at life. Katy describes how being in the home where she grew up has strengthened her in trying circumstances.
Katy says, “There are many hard things right now and many things I don’t want to do. But I try not to complain. I try not to worry. I roll up my sleeves as we spend night after night in the hospital and long days in the clinic, deal with good news and bad news, and make many life-altering choices based on little to no data. We consult with the doctors, make the best decision we can, and move forward. Instead of worrying about what might happen six months from now, we have learned to enjoy the small things day to day, like Emmett learning new words or learning to walk again or taking a bite of food. We find great joy in these small victories and take lots of pictures of him. My mom’s strength has served as an example to me to work hard and do what’s in my control, then enjoy life with a positive attitude and not focus on the elements over which I have no control.”
Read more about Katy’s experience in her article, “Steadiness,” in Seeing the Everyday no. 20, pp. 80-83. Subscriptions and renewals ordered by January 30 will receive issue no. 20.
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Life’s routines can at times feel burdensome. We gain great strength and perspective from those who daily overcome particularly difficult and constant challenges.
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Last winter a reader called and shared her appreciation for how the magazine was benefiting her and her family. During our conversation, she noted how helpful it would be to have an issue dedicated to parents who have children with disabilities. She and a number of parents in her community have children with various challenges, and she described the loneliness that they often feel in working through their particular circumstances.
Since our conversation, we have been reaching out to families who have or have had children with disabilities, including lost sight and hearing, Down syndrome, cancer, and autism. Their experiences vary significantly from one another, yet each one carries two similar threads: near constant challenges with almost imperceptible progress, and deep appreciation for life and for one another.
We feel we came to know these individuals and how their parents assisted in bringing out their remarkable gifts. We learned about the special gifts of Thad, whose influence forged compassion, optimism, and hope in his brother; how Ilene helped her sister find deeper joy in making another person happy; and Devin, who taught his father that work is more about developing a person than accomplishing a task. The individuals in these articles remind us that every person brings distinct gifts to their family and to the world about them. We find those gifts when we take the time to notice.
Discovering and building one another can be challenging on a day-to-day basis, particularly when the progress is intangible and without an end in sight. Perhaps what is so remarkable about the individuals and families in this issue is that they provide perspective amid ever-present difficulties. One mother, whose two children have autism, faces days that are more difficult than she could have ever imagined, days that are overwhelming. Yet, she dries her tears and moves ahead, just like all parents who face the choice to give up or to find hope and renewed perspective in their surrounding challenges.
Together, we find great strength in considering the tasks and joys ahead, in recognizing the difference others have made on us, and what our own efforts will do for our children and the generations to follow. We hope you find your own story as you read about the ordinary yet remarkable people within this issue of Seeing the Everyday.
All new subscriptions and renewals ordered by January 30 will receive issue no. 20. We look forward to you receiving your copy.
Recognizing each day for what it is—an opportunity to be together—to learn, to teach, and to grow with one another. “Cloaked in their very ordinariness, the prosaic events that truly shape our lives—that truly are our lives—escape our notice” (Gary Morson). Nothing is really routine. From Seeing the Everyday Issue No 18.
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