BY GABE LICHT
DELANO, MN More than two years are gone from Mary Sullivan’s memory, but she remembers the traumatic event that caused that to happen: the death of her 10-year-old son, Aiden, Sept. 9, 2013.
Now, she is hoping to ensure that Aiden and others lost to Sudden Unexplained Death in Childhood are not forgotten.
She will be displaying a banner honoring those children during the Taste of Delano Wednesday in Central Park.
Mary and Jeff Sullivan had given up trying to have children, but then they learned they were expecting Aiden.
“When I was pregnant with him is when we realized my family on my mother’s side carried a genetic disorder called Fragile X,” Mary said. “ . . . In boys, it causes mental retardation, distinct facial character patterns, many different things.”
Before Aiden was 2, testing confirmed he had Fragile X.
“We started caring for him as best as we could,” Mary said.
After Mary was laid off from a corporate job in 2009, she decided to stay home and care for Aiden.
That was also the year the Sullivans moved from Woodbury to Delano.
“I knew he would need more attention than a big school could supply for him,” Mary said.
Bus driver Patty Ziske was the first person Aiden met and “she welcomed him with open arms,” Mary said.
Because Aiden needed more one-on-one attention, the family turned to the Meeker And Wright Special Education Cooperative (MAWSECO) Trek program. Janet Berzins became Aiden’s bus driver, and connected with him like Patty had.
Both Ziske and Berzins stay in touch with the Sullivans.
To track Aiden’s progress, Mary and his teachers kept a book.
“I’d write how his morning was and they’d write in it about his day,” Mary said.
Outside of school, Aiden loved spending time with his dog, Kobie, and his cats.
“Aiden didn’t have friends, but that wasn’t something he particularly needed,” Mary said. “He was happy with his animals.”
He also enjoyed water, playing with duct-tape swords, watching movies like “Toy Story” and “Cars” at home, and listening to music by AC/DC and Metallica.
Mary remembers watching Vikings football with Aiden one Sunday afternoon in September 2013.
“He seemed a little mellower than normal,” Mary said. “Sunday, I sat on the couch with him the whole day. He never sat still. He laid down next to me with his head on my lap.”
At 8 p.m., he kissed his parents goodnight, and Mary tucked him into bed.
Aiden normally woke up at 5 a.m. each morning, but that was not the case this morning.
Mary decided to wake him up at 6:40 a.m.
As she walked to his bed in the dark room, she bumped into him on the floor.
“I felt the back of his head,” Mary said. “I went to give him a kiss, and his head slipped out of my hands and thumped on the floor. That second, I knew he was dead.”
She called 911 for help, and Delano Fire Department responded.
“I was rocking him and holding him,” Mary said. “All of a sudden, this man, I didn’t know this man, he was holding me and Aiden. I just remember crying.”
Mary later learned that it was Delano Fire Chief Bob Van Lith who was comforting her.
“I will never forget him because of that,” Mary said. “ . . . It’s that tiny moment of compassion that he provided, and he didn’t even know he did it, that I will never forget.”
After the death, the Wright County Sheriff’s Office and medical examiner investigated.
“They ask questions trying to figure out if you harmed your child or what happened,” Mary said. “I thought, ‘Did I accidentally give him too much meds? Did I miss something? . . . Did I accidentally kill my child?”
His heart and brain were sent to the East Coast for examination, but his death was ruled a Sudden Unexplained Death in Childhood.
Support at a time of grief
Aiden’s wake featured the music he loved from AC/DC, Metallica, and the song “You’ve Got a Friend in Me” from the movie “Cars.”
“I wasn’t going to have any of that sad stuff,” Mary said.
At the wake, Mary was surprised to see at least 30 staff, teachers, para-educators, and bus drivers from Delano and MAWSECO.
“I didn’t know all these people,” Mary said. “I had no idea who they were. They were paras for other children. They were teachers for other children. He would say ‘hello’ to people in the hallway.”
Rather than a funeral, the family hosted a celebration of life in the Delano Middle School media center featuring his favorite books, cars, toys, swords, and Jimmy John’s sandwiches and chips.
Mary said the community was very supportive.
“The community was great,” Mary said. “I didn’t know a lot of people. When you have a child with special needs, you’re not in the school population, so you don’t meet other parents . . . The community of people who knew him, we had food and all sorts of things. The support we got is something I won’t forget. They’re still staying in contact.”
Dealing with the loss
After the celebration of life, “That’s when the wheels fell off,” Mary said.
She was unable to sleep for four days and struggled with everyday tasks.
“I would bawl at the grocery store when I saw ravioli because he ate that every day,” Mary said.
Counseling kept her going.
After six months, she felt she had had enough.
“In March of that following year, I couldn’t handle my sorrow anymore,” Mary said. “I just happened to be at my counselor appointment. She looked at me and said, ‘Are you safe? Mary, are you planning to kill yourself?’ I calmly said, ‘Yes.’”
She was admitted to a mental health care unit, where she realized she wanted to live.
But, she was unable to leave the house, grocery shop, or cook for two years.
She later realized she was suffering from Post Traumatic Stress Disorder, and she has since gone through eye movement desensitization to treat it.
“That is my life’s purpose now, to help people deal with PTSD,” Mary said.
She’s also raising awareness about SUDC.
“After a certain age, there’s no support, there’s no research, there’s nothing,” Mary said.
The SUDC Foundation is trying to change that.
One way is by sending three banners recognizing those lost to SUDC to be displayed throughout the world, including Aug. 2-5 in Delano.
Another way is legislation.
“(Senators) Amy Klobuchar and Al Franken just passed legislation to acknowledge SUDC and try to form a database,” Mary said. “There’s no record. They don’t keep track of this. Minnesota will now keep track of this. They’re going to try to get data so they can correlate the data and try to determine what happened.”
What should be said or done to comfort those who lose a child or loved one?
“What people say is, ‘Let me know if there’s anything you need,’” Mary said. “That will never happen.”
She recommends being specific and intentional.
“As a friend trying to help someone, offer and make it more of a statement,” Mary said. “Say, ‘Is it OK? I’d like to come over Wednesday and mow your grass. I’d like to come over and just clean your house. I’d like to come over and buy groceries and help you grocery shop.’”
Actions help more than words.
“Don’t try to make it better by words,” Mary said. “Words don’t make it better.”
Just being there for someone can make a huge difference.
“Show up, and remember, and say, ‘I’m so sorry.’ Period,” Mary said.
Following up with people after time has passed is encouraged, as well.
“After a week, two weeks, a month has gone by, it’s OK to call or send a note to say, ‘I still think about you,’” Mary said. “That’s what the bus drivers did. They said, ‘We’re thinking about you. We love Aiden.’ That made a huge difference.”
It’s always OK to ask to talk about a lost loved one.
“People ask, ‘Is it OK if I talk about Aiden?’” Mary said. “Sometimes I say, ‘Not today. I can’t without crying, but ask again, and I’ll be able to tell you a story.’”