JOSHUA

Jamie carries Joshua, 10, to the couch as Caleb, reads a book nearby on May 15, 2018. When Josh gets home from school, Jamie carries him from his wheelchair in the garage into the living room. “This is a hard life; this is an incredibly good life. It has given us the ability to see joy in the tiniest things. We don’t celebrate milestones, we celebrate inch-stones.”

Josh is a happy and curious eleven year old boy. He was diagnosed with Cytomegalovirus and Cerebral Palsy as an infant. His brother Caleb is eight years old. Caleb is more reserved, incredibly caring, and has a strong desire to be helpful. He is beginning to better understand the differences between him and Joshua and what his role might be in his brother’s life. Their parents, Jamie and Ben, hope that Caleb will continue to want to help and support Josh, but they are careful to avoid putting that pressure on him. Although the family may seem different, Jamie says they deal with the same joys and struggles of any ordinary family.

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Jamie finishes getting Josh dressed for the day on Nov. 17, 2016. “I don’t really see Josh ever truly living independently. He’ll always need somebody to help him for physical daily living skills and things like that. He’ll always need somebody he’s not going to be able to make his own breakfast in the morning.”

Caleb and Josh ride in the car after their swim lessons on March 30, 2017. Ben says that Caleb is more reserved than Josh, “We joke that when Josh becomes president Caleb will become head of security because that’s just the personalities they have.”

“We don’t really know what Josh’s future is going to look like. He’s very good at hiding what he can and can’t do. He only performs when he wants to. We very strongly feel that the only thing that will hold Josh back is him. He will be able to be as successful as wants to be based on the work that he wants to put in. It’s gotta be his choice.”
— Ben, Joshua’s Father

Joshua, 10, plays floor hockey during Physical Education at school on Nov. 10, 2018. Josh usually uses his wheelchair at school but uses the walker in P.E. His father, Ben, says “He’s got a giant outsized personality. Loves people, loves the social environment, loves the interaction.”

Joshua signs with an interpreter during speech therapy at school on Nov. 10, 2018. Josh is profoundly deaf in one ear and uses American Sign Language to communicate. His family members are also working to learn ASL.

Josh (right) waves at other students as he moves through the halls with his aide at school on Nov. 10, 2018. This year, Josh switched schools in order to have a more challenging environment. Jamie and Ben are very happy with his new classroom as he is pushed more and gets to interact more with his friends.

Jamie (left) calls to update family members after Joshua (right), 10, had surgery to get his Gastrostomy Tube at Golisano Children's Hospital on June 12, 2018. “Every winter up until we got the G-Tube, Josh would usually end up in the hospital, if he wasn’t feeling well and he started to vomit, he couldn’t stop at that point and he would dehydrate within hours, which was hard.” Jamie says that the G-Tube has made life a lot easier for their family.

Ben (left) talks to his son, Joshua, 10, while Jamie checks one of the monitors in his hospital room after surgery to get his Gastrostomy Tube at Golisano Children's Hospital on June 13, 2018. Prior to getting the G-Tube, Joshua was not maintaining the expected weight for his age and was often sick. Jamie says this was the “greatest thing we’ve ever done for him.”

Josh, 9, and his brother Caleb, 7, play with the grandfather at their home on Dec. 13, 2017. Both of the boys love spending time with their grandparents who often come over to help out.

Joshua, right, looks over at his younger brother, Caleb, while sitting in their living room on Nov. 17, 2018. Jamie says, “We have a good life and we have two beautiful sons who want the very same thing in life. They want acceptance, they want fulfilling work, they want to be heard and loved.”

Caleb, 7, and his cousins go down a slide during Josh’s tenth birthday party on April 2, 2018 as Josh watches with his father and aunt. Josh participated by directing his cousins where to go on the playground. Caleb likes to be helpful and find ways to include Josh. Ben says, “In Caleb’s mind it’s a forgone conclusion that Josh will be part of his life. That’s something that we’ve tried very hard not to put on him as a responsibility. I don’t now if it’s inherent or just his personality or just his nature, it’s something that he feels strongly about.”

Jamie says their family has to think about logistics more than others, but that they are a normal family. “It might look harder from the outside and in some ways it is harder. It doesn’t mean that we are unhappy in our life, and it doesn’t mean that our life is not amazing.”

Jamie and her son Caleb (right), 7, snuggle in their home on Dec. 13, 2017. Jamie and Ben try to make sure that Caleb gets individual attention whenever they can since they often have to focus on Josh. The family’s home is designed to be accessible, especially for when Josh is older. Ben says, “We’ve ordered our life around Josh and tried to prepare as much financially so that will never be a reason to hinder his future. As well as for Caleb’s benefit. The more we plan now the less he has to worry about later or feel guilty about later. We’ve tried to take some of that concern out of the picture.”

Ben (right) holds Joshua, 8, while playing in a leaf pile outside their house on Nov. 18, 2016. Jamie says their family does enjoy doing things like going on vacation together, but they really appreciate any opportunity to spend time together, just the four of them. ”We are a normal family and a pretty typical one at that. We have our highs and we have our lows just like every family.”

Josh, 8, watches as his parents setup Christmas lights and his brother, Caleb, 6, runs into a leaf pile on Nov. 18, 2016. Jamie says, “some people look at us and think ‘oh we could never do what you do.’ You do it because you love your child, not because you want to be involved in a disability group. Our son wants the same things as everyone else. He wants friends, he wants to have fun, he wants to be included and be important and feel self worth.”