The Heise Family

“I stopped going out with the kids alone. It started getting really scary,” recalled Jenna.

“I started changing their diapers on the floor, and not playing with them on the bed. I didn’t want to be alone with the kids.”

Getting Answers

In November 2013, their family finally got answers – Jenna had Postural Orthostatic Tachycardia Syndrome, or POTS Disease, secondary to Ehlers-Danlos syndrome. POTS attacks the nervous system so that blood pools in the lower body and doesn’t pump to the brain. To compensate, the heart starts working overtime but can’t correct the problem, so POTS sufferers frequently faint. “It’s like running a marathon 50 times a day,” described Jenna.
Separately, Ehlers-Danlos syndrome is an inherited connective tissue disorder. For Jenna, this explained her slow healing and preterm births with both boys. The diseases constantly deteriorate her body, resulting in frequent hospital visits and separation from the boys.

Fortunately, a family friend told them about Wonders & Worries.

When Cole was 3 years old, he met Michele Martin, a child life specialist at Wonders & Worries. During their time together, Cole made a medical doll and named it “mommy.” To make visiting Jenna in the hospital less scary, Cole and Michele used medical play to talk about words and materials he might see. He also dressed up in scrubs, a surgical mask and medical booties. Among the things learned:

“Doctors don’t reuse gloves because they get dirty,” Cole proudly recounted.

Change in Routine

In January 2016, Cole and Jacob witnessed Jenna have two grand mal seizures during a family outing. Jenna was hospitalized for two weeks and then essentially bed-bound for months. Tim and Jenna noticed that the change in routine was affecting Cole and Jacob, now 3 and 5 years old.

“We were worried about the boys. In particular, Cole was quieter, more withdrawn,” said Jenna. “We didn’t know how they were dealing with things.”

This was the motivation to reconnect with Wonders & Worries. Cole and Jacob created artwork with Michele Martin and talked about it at home. “They each made coping boxes with special things in them if they were having a hard day, a sad day or were upset,” Jenna said. “They used their medical dolls many times to talk about mommy’s body.” Cole and Jacob also each chose a comfort blanket that they keep on their beds.

Parenting Skills

To make sure they were doing all that they could to help the boys, Tim and Jenna took a Wonders & Worries parenting class with Kim Fryar, program director.

“The class taught us how to talk to the boys about what was going on.” -Tim Heise

Tim and Jenna learned about “special play time.” Special play time is a technique that allows children to be in charge of play and gives them an opportunity to express feelings and ideas they can’t normally say.

Special play is now part of the family routine each time Jenna returns from the hospital. The boys say things like, ‘I don’t want you to go to the hospital. I’ll take care of you,’” said Jenna. “It’s a valuable way for us to know what’s going on that we learned from Wonders & Worries.”

Faith, Hope & Love

“Because of Wonders & Worries, we decided not to sugar coat things for the kids.” – Tim & Jenna

Everything in their lives has changed since 2013, and it’s hard on Tim and Jenna. Jenna can’t drive and Tim has learned to enjoy playdates. But the boys are affectionate and outgoing, energetic and playful. “It was such a relief when Michele told us they were coping well. This is their life,” added Jenna.

As the Heise family celebrates small wins like no hospital visits in the last month, Tim and Jenna are grateful and full of hope for their sons’ futures.

“Wonders & Worries gave us the tools to raise compassionate humans,” said Jenna.