New Lenox Principal Finds Slivers Of Sunshine In Difficult Journey

NEW LENOX, IL — Emily Schissler has always approached life on a day-to-day basis, finding it easier to live in the here and now rather than to try and take in too much at one time.

But considering all that that life entails as a single mother and principal at New Lenox's Cherry Hill Elementary, sometimes the day-to-day can be more than enough to handle.

But rather than becoming overwhelmed by a life that has included losing a 4-year-old daughter who had spina bifida in 2015, and adopting another little girl living with the same condition, Schissler has managed to find joy in the little things rather than being dragged down by the enormity of everything that life throws at her and her family on a daily basis.

Days filled with what Schissler has come to know as everyday occurrences as well as the unknowns that routinely pop up have just become business as usual. And yet, after her 10-year-old adopted daughter, Alexis, was rushed to Lurie Children’s Hospital in Chicago earlier this spring and remained there for nearly two months fighting for her life, the challenges that can seem so overwhelming at times continue to mount.

And yet, Schissler continually finds ways to persevere as she and her family continue to fight.

“Watching Emily navigate all the tough moments is hard,” her sister, Erin Nemeth told Patch on Friday. “In that hard though, is inspiration and strength. She navigates being a special needs mom with so much love and energy to give Alexis joy and life experiences.

“Emily is one of a kind — finding even just that sliver of sunshine during a storm. And that is an inspiration to so many.”

The ability to find a glimmer of sunshine has been years in the making and remains a work in progress, Schissler admits. It’s been more than seven years since her 4-year-old daughter, Isobel, died unexpectedly. Yet, it was because of the condition Isobel lived with that allowed Schissler to meet Alexis, who was a patient at Lurie, where Isobel was also being treated before her death.

Schissler, who also has a 13-year-old son, Logan, remembers seeing photos of Alexis and finding out that she had no one in her corner to fight with her. Schissler, who had considered adoption before Logan was born, was given the option of perhaps taking in Alexis as a foster child, but instead, wondered if this little girl was one she was meant to bring into her family all along.

So, before Isobel’s death, Schissler added to her family — not knowing that within a short period of time, life had an unexpected twist in store. But in the years since Isobel's death, life with Alexis and Logan has come with its own set of circumstances, which is where Schissler's one-day-at-a-time approach comes into play.

“There’s times in life when you can pause and kind of feel the overwhelmingness of it,” Schissler told Patch on Friday.

“For me, it’s just my life and other people may think it’s crazy, but for me, it’s what I do every day.”

Schissler knows herself well enough to know that breathing in more than she does would prove to be too much. Her life of work and raising two children after losing her daughter has been a series of small, and sometimes baby steps. Getting through the day gradually rather than creating a plan has proven beneficial for Schissler, who has watched as a community of friends and family members surround her and walk alongside her to help her cope.

But on the days when life gets tough, the practice of asking herself what the next step to be taken might be has never steered Schissler wrong.

“For me, it’s like, give me one baby step to work toward progress in the right direction,” she said. “For me, it’s always about looking at those small markers. For parents of special needs kids, you celebrate those little things. If it’s health, if it’s progress – whatever it is – you look for whatever that next step is forward.”

The experience of living life with spina bifida with Isobel has prepared Schissler for the journey she is now on with Alexis. There are times, Schissler admits, when knowing as much as she does about her daughter’s condition can be both a blessing and a curse.

When Alexis was rushed to Lurie in March, the familiarity of the situation immediately threw Schissler back in time to 2015. She says that Alexis was being treated in the room next to the one directly where Isobel —who suffered from sepsis — died seven years ago. Much of the information doctors were providing her was were things Schissler had heard before, which made her current reality even more difficult after one living through it once already.

There were times, Schissler admits, that she wished she didn’t know as much as she does because when doctors talked about numbers that spelled the difference between life and death, she knew what they all meant.

On the toughest of days, Schissler found solace just reconnecting with her daughter. She would sit by her bedside and pray or simply listen to her daughter’s favorite playlist, using familiar songs she knows Alexis loves to see her through, hoping her condition would eventually improve.

The message to her Alexis remained consistent: “If you’re still here fighting, I’m still here fighting,” Schissler found herself repeating.

“She was the one doing all the hard work,” Schissler said Friday. “I was just sitting there with her.”

She added: “There are definitely those times when you don’t know how you’re going to take that next step or get through the next thing … so for me, it was about focusing on those next little steps.”

But after weeks of difficulty, Alexis experienced what seemed like almost a miraculous recovery. That led to the next step that led to Alexis eventually being released from the hospital and ultimately recently returning home.

Yet, as much as Schissler understood the next steps because of what she had gone through with Isobel, the journey isn't always easy, she says. As someone who likes to control the ebb and flow of daily life, Schissler acknowledges that being a special needs mom is rarely conducive to being able to have a say in what happens next.

“That still is a work in progress for me and I think it forever will be,” Schissler said.

The needed adjustments have been constant. Alexis was hospitalized on her 10th birthday, which detoured the Lego birthday party Schissler had planned. Plans for a vacation that was planned for this summer suddenly changed when Alexis’ extended hospital stay at Lurie and subsequent stay at Shirley Ryan rehabilitation center forced the family getaway to be put on hold for now.

As plans change, so does the schedule moving forward, which is something Schissler says can be difficult. Schissler’s parents have taken on a bigger role in caring for Logan while her friends have taken on more responsibility in helping Schissler get through the day-to-day routine of her life.

Schissler has developed a “quick call” list for people that she has come to rely on for assistance when life dictates it — all of which has made Schissler appreciate the support system that has been built around her.

All of this has taken place as the COVID-19 pandemic has already made life difficult for educators like Schissler. In what was already a difficult year at school, Alexis’ health emergency threw another stressor into the mix for the Cherry Hill principal, who has been forced to cope with one thing after another in both her personal and professional life.

There were times when work seemed like a break from her home life and when her home life seemed like a brief respite from everything going on running a school as the pandemic continued. There were days, Schissler said, when everything just blended together, creating a life that she now owns as being the only one she knows.

Yet, Schissler has found a therapeutic outlet in writing. She has chronicled her journey in an online blog since the day Isobel was born at 7 pounds, 8 ounces. The online journal has become part of her routine. Schissler has always found more comfort in writing than in verbalizing her story, which has made the running blog she has maintained for several years a welcomed release of emotions. She admits to struggling to let people into her life, and her writings have served as a bridge between her and those looking for life updates.

The blog has become a timeline of life as Schissler knows it. At times, there are large gaps representing times when things are either going exceedingly well or increasingly difficult to the point where she isn’t able to put her feelings into words.

But the outlet has proven to be critical for Schissler’s well-being while also allowing for regular updates to the expanded support system around her. Writing has also allowed Schissler to stop and reflect on the moments that she knows could otherwise get lost in the chaos of everything going around her.

So in a number of ways, writing has proven invaluable — not only for Schissler but for those around her, including Alexis.

“It takes a village is such a coined phrase, but it’s so very true with a kid like Alexis,” she said. “I know that I need to keep her village moving forward and praying for her and praying for Logan, too, and make sure we keep our village with us.”

She added: “Just to mark the journey (is important) because Alexis’ story is an incredible story and the stuff this little girl has fought through is insane. So, it’s important for me to mark it all for her and know that she is one tough cookie.”

As much as Alexis has endured, there are plenty of next steps left to be conquered.

A GoFundMe effort started by Schissler’s friends will help to support her as she attempts to make life as normal as she can for her family. There are improvements that need to be completed in the family’s home to accommodate Alexis’s condition as Schissler provides the best care possible for her daughter.

As of Friday, the GoFund Me has raised $2,900 of a $20,000 goal. The funds, according to the GoFundMe page, will go toward giving Alexis the surroundings she needs to thrive even though that looks different than it does for most children her age.

Modifications need to be made around the house, but Schissler hopes in time, the home that she shares with her children will be one where Alexis can rediscover her independence and find the joy that Schissler knows is inside of her daughter.

Despite the work that remains ahead, the days that are considered the good ones — the ones when Alexis can create colorful art projects with crayons and colored paper and when, eventually, she can return to playing with her beloved Legos.

The good days are ones when Schissler can return home to find Alexis in familiar surroundings or the days when friends can visit. Seeing cousins that Alexis hasn’t seen for three months may not seem like a huge victory for most, but in the life that Schissler and her family have come to know, it’s all about the little things.

And it’s at the end of the good days when the slivers of sunshine are bigger than normal that Schissler can rest easy before moving on to the next step and the next day.

“It’s definitely a very different type of sleep you can enjoy because you’re grateful you were given that kind of a day,” she told Patch. “(Alexis) fights hard for that kind of a day.”

And as Alexis fights, her mother is right there fighting right alongside her daughter always content to take one day at a time, one step at a time.

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