Ezra's Story

"We are a team forever."

Before Ezra was born, he was diagnosed with spina bifida and hydrocephalus. The doctors told Andrew and his wife that Ezra would not be able to walk, and that he would be paralyzed from the waist down. So the family got to work, and was connected with ErinoakKids when Ezra was just seven months old. To start, the family began with physiotherapy, as one of the big goals was to get Ezra to lift his head off the ground. 

“Right away, we took the exercises Kim showed us and started replicating them at home,” says Andrew, Ezra’s Dad. “Even with the parallel bars, I would put chairs at the end of the couch so there was something for him to brace on.” 

Andrew, Ezra’s primary caregiver, paid close attention to the exercises that took place in physiotherapy sessions at ErinoakKids. Ezra even took his first steps in one of the sessions. 

Ezra was then moved to occupational therapy, where Ryna* helped him with balance, strength, and speech therapy. A lot of Ezra’s brain power was focused on the physical, and his speech was trailing behind. There was a lot of work to do, but Andrew was prepared to make it happen.
 

“We didn’t really have a lot of answers at the time. ErinoakKids was there not only to give us those answers, but tools and other connections that helped Ezra thrive,” says Andrew. “We would be lost without ErinoakKids.”

Andrew and his wife Beth have three children, Ezra being the youngest. His two big sisters have stepped up to help him thrive since he was born.

“The girls just adore him and they really help him as much as they can,” says Andrew. “We do what we need to do, and we do things as a unit.”

One of the most important things in the house is tending to Ezra’s catheter. There is a rule for everyone, that no one argues about catheter time. From speaking with other families with children who use catheters, Andrew knows that, as Ezra gets older, he will most likely have a shyness around and a willingness to disregard catheter time. 

“The medical stuff for Ezra has to take priority over other things,” says Andrew. “And the girls get that. They have always been so understanding and helpful around his care.”

Andrew and Beth have very open communication with their daughters. They know when to be open about needing attention or to spend quality time with their parents, and it is always addressed. 

“They know that in order for their brother to live, we all have to tend to his medical stuff,” says Andrew. “But that doesn’t mean they are shy about telling us when they need to spend one on one time with either myself or Beth. We are all so good about that.”

He talks to his daughters about resentment, and how to stop it in its tracks. They know that if it isn’t addressed, it will only grow. 

"We are a team forever,” says Andrew. “And Ezra is our world.”

Ezra's story represents "Family" in the F-words framework.

Learn More about the F-words Framework