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Home  •  Resources  •  Stories  •  Bryson

Meet Bryson

Childs Nickname:
“Cowboy”
Parent(s) Names:
Jane and BJ
Sibling:
Macie
Diagnosis:
Lissencephaly, intractable epilepsy, chronic respiratory distress

How did CAP-C change your lives?

It took a huge weight off of our worries about caring for Bryson. My husband and I could finally sleep without the fear of him having a terrible seizure while we slept. It kept our family together with the support of his nurses and case managers. My husband could keep working to provide for our family.

 

How did you get through the hard times?

#1–Our faith in God. We knew Bryson was in His hands, not ours. BJ and I have been each other’s rocks, as best friends, through all the hard times. We accepted Bryson exactly how he was. He was perfect in our eyes. He loved music and lights, snakes, ducks, chickens, cats, and dogs. He loved taking rides around our farm and being outside. He was quiet, but paid attention to everything around him, especially his little sister, who constantly entertained him. He was smart, had a fun sense of humor, and flirted with the ladies.

 

Advice to other parents:

Enjoy every single day with your child and family. Some days will challenge your entire being–just know tomorrow is a new day. Take it one moment, hour, day at a time. Turn to other parents with older children who have already been through so much. They have a lot of advice and wisdom to give that you might need to learn or think about. Your child is a blessing, and you will learn more about life with your precious angel than most people learn in a lifetime. Ask for help when you need it. Don’t feel guilty about taking time for yourself.

 

Bryson’s passing:

We had to make the hardest decision a parent should be forced to make. We transitioned him from palliative care to hospice on May 5, 2023. Six days later, he passed with dignity surrounded by family and friends at home. He fought so hard in his 10 short years. John Wayne said, “Life is about getting up one more time than you’ve been knocked down.” Our cowboy made this his motto. During the hardest times, he had a smile that would fill your heart with sunshine. On the day Bryson passed, he wasn’t knocked down, he was in the arms of Jesus and running through the streets of gold! “Hard times may have held you down, but they won’t last forever…,” unknown author.

Interested in Contacting a family like Bryson's ?

Have a question or similar experience you’d like to share? Contact us, and we’ll be happy to connect you.

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