Accessing Independence - HHSH was born out of grief. But that grief has driven us.
The birth of a child is an exciting, yet nervous time. Will everything be ok? Will he be healthy? Will she have my husband's eyes?
Most often your child's birth is a beautiful tale of love at first sight. For others, the birth and the following nervousness is only the beginning.
When we had Henry in 2007 he was a beautiful gift for an amazingly bad year. My father had died in February and Henry arrived just in time for Christmas. This was not our first child so we knew what was coming.
But, from the moment I learned I was pregnant I knew without a doubt that something was different with this child. after he was born, Henry failed the newborn hearing screening test. He was profoundly deaf. While some parents are fussing over developmental milestones we were grappling with the decision to use sign language or get a Cochlear Implant; we struggled with identity and we worried for the future of our child without access to sound.
Sometime later, we learned that although he was deaf he was now beginning to lose his vision. He was 5 years old when we learned he had RP (Retinitis Pigmentosa). This news was devastating. It still is. There is no stability. For Henry most of all. His vision is variable day-to-day. Each time we/he see(s) a vision change it’s as if the diagnosis was just received all over again.
Through genetic testing we learned Henry has the most common cause of deaf blindness: Usher Syndrome. There is no cure for Usher Syndrome. There are ways to cope: American Sign Language, hearing aids, cochlear implants, mobility cane, Braille. But, there is no way to ever fully be prepared for just how much your life has changed and will keep changing.
Accessing Independence is our way of bringing the deaf, blind and deaf blind community together. Any sensory loss is devastating. It can be isolating; a dual sensory loss is so much more. We strive to enrich the lives of children in our community with more. We want children to be children and we want to lessen that burden... anyway we can. We know this life because we are living it…. successfully!
Kim and Philip Norton