Crystal Lake mom marks second Mother's Day after losing son to CHIME syndrome

CRYSTAL LAKE – Although Denise Meschewski's first child, Sarah, was born healthy, her two sons, Jacob and Marc, were born with CHIME syndrome – a rare recessive disorder that causes heart defects, seizures and intellectual disabilities, among other side effects.

The disorder is so rare that the Meschewski family said that Jacob was the only case of it the doctors said they had seen at the time.

A year ago in March, the 61-year-old Crystal Lake mom lost her youngest son, Marc, after complications from the disorder.

Marc’s death came just a couple of months before Mother’s Day.

“It doesn’t get any easier,” Meschewski said. “Being a year later really doesn’t make it any better.”

When Marc and Jacob were growing up, Meschewski had to give up her job to care for her children and help them with everyday activities such as getting dressed, going to the bathroom and bathing.

“They weren’t able to do those kind of things on their own,” Meschewski said.

During that time, Meschewski was looking to address a lack of adult programming for recent high school graduates with mental and physical challenges. Meschewski and two other moms started their own program, the McHenry County Adult Program, known as McCAP.

The nonprofit helps young adults with special needs in McHenry County. Today, the program is run out of the McHenry County Mental Health Board building.

After Marc’s death, Meschewski decided to leave the program 15 years after its creation.

“We joined a new program at the time and decided to send Jake there instead,” said Bob Meschewski, Denise’s husband. “In a way, it was a new start. We didn’t want Jake to go to the [McHenry County Adult] Program and wonder where his brother was.”

Both Jacob and Marc eventually became sick, and they had about 18 hospitalizations at one point between the two. Denise was constantly by their side, helping doctors figure out what pain her sons were in, since they couldn’t speak for themselves.

“She’s just been so resilient and caring through all the challenges given to her,” Bob Meschewski said. “Denise has dedicated her life to raising, caring for and doing whatever it takes for her children. She’s really given them everything she can.”

Jacob eventually recovered, but Marc kept getting weaker with each hospitalization before he died. Sunday marks Denise’s second Mother’s Day without her youngest son.

“As you can imagine, with Mother’s Day coming up, it’s going to be tough on her because her family is no longer intact,” Bob Meschewski said.

Even though she’ll be thinking of her son throughout the day, Denise said her Mother’s Day plans include possibly visiting her mother-in-law and going on a “nice walk.”

“I love the outdoors,” said Denise, whose favorite activities include camping and going to concerts.

Bob Meschewski said a lot of his wife’s caring nature and desire to help others rubbed off on their daughter, Sarah Gulgren, turning her into a compassionate person as well.

Gulgren is a special education teacher at Alden-Hebron Elementary School. Gulgren said she also volunteers for Options and Advocacy for McHenry County, which helps individuals with developmental disabilities.

“I think she’s the greatest mom in the world,” Gulgren said. “I don’t think I could have asked for a better mom or a better role model. She’s the most positive, calmest person and has such a wonderful outlook on things. I think she really instilled in me important values about accepting everyone and appreciating everyone’s differences.”

Gulgren said that she doesn’t believe her family is unique but that it’s normal.

“Her and my father, I feel like always gave us situations that were very normal that every other family did,” Gulgren said. “We went camping, and we went on vacations.”

Denise said they had a poster called “Marc’s Adventures,” which had pictures that marked all the things Marc got to do before he died, such as camping trips and a visit to the Golden Gate Bridge.

Denise also was the caretaker for her mom before she died with Alzheimer’s disease a year before Marc died, and now Denise helps take care of her two grandchildren.

Denise said she’s thankful her two grandchildren are healthy.

“She’s the quintessential modern mom, grandma and wife,” said Cindy Sullivan, executive director at Options and Advocacy. “I think her attitude and the love for her family is so obvious.”

Many people hear Denise’s story and say she’s extraordinary. However, the Crystal Lake mom believes she’s nothing of the sort and has lived a normal life.

“I don’t feel special at all,” Denise said. “That’s what you do when you’re a mom. You take care of your kids. You do whatever you have to.”