JAY’S DIARY:
ON PARENTING A CHILD WITH A DISABILITY
SOUNDCLOUD | TRANSCRIPT
When Jay and Karen Dean were pregnant with their first child, they took a standard prenatal test to determine if the baby would be born with spina bifida, and the results were negative. But in January of 2010, Lucas Dean was born with a hole in his back where his spinal cord had not fused together completely—a condition called spina bifida. Because of this neural tube defect, Lucas doesn’t have feeling in his legs and mostly gets around in a wheelchair, but he does not let that limit him; he skateboards, skis, plays basketball, takes swimming lessons, acting classes, and plays piano.
Lucas just turned eight, and as he approaches his teenage years, he is beginning to vocalize frustration that his body doesn’t work the way his able-bodied friends’ do. As parents, how do Jay and Karen support Lucas through this transitional moment? How do they nurture his joyful and fearless spirit, while honoring his frustration and pain? This diary explores those questions.
RESOURCES:
Courage Kenny Rehabilitation Institute: This is where Lucas plays basketball and takes swimming lessons. This is also the place through which he skis.
HopeKids: This organization is aimed at providing fun experiences for families of kids with disabilities. I'll be running a 10k in June to raise money for this organization.
Gillette Children's Specialty Healthcare: This is where Lucas gets all of his care. We go to appointments with his neurosurgeon, orthopedic surgeon, urologist, etc. He also does his physical therapy through Gillette.
