“Your baby is blind and forevermore will be.”
A statement that was burned into our brains forever.
Blind. My mom started crying. As a mature and wise adult, she had a much clearer grasp of the enormity of that statement. As a young 18-year-old adult, it didn’t strike me the same. Honestly, I didn’t even understand her response and thought it was odd that she started crying so suddenly.
My inner response was more of, “Okay, now what. Where do we go from here.” Oddly enough, as a child I was fascinated with Helen Keller and Mary Ingalls from Little House on the Prairie. Weird, huh?
Calm and Peace
Then again, maybe my response wasn’t because of my age. That calm and peace in the face of adversity has become my hallmark for the long-term. That trait has gotten me through many struggles, including as my youngest daughter’s life hung in the balance in 2011, during a sudden and mysterious illness. That calmness was tremendously beneficial in my nursing career, bringing with it a reputation of always being calm, even in the midst of serious medical crises and stressful situations at the hospital.
Why was she blind?
As the doctor finished telling us the dreadful news about Jessica’s vision, she led us into the hallway to look at the CT films we brought with us to the appointment. One look at the film and it was obvious why the doctor said blind forevermore. It was completely clear, even to the untrained eye.
Part of Jessica’s brain was just not there.
Most of the area of her Occipital Lobe on the left and a large part of it on the right was not there. Instead it was a space filled with cerebrospinal fluid. Part of that fluid filled space went deeper into the brain, potentially affecting things other than vision. The diagnosis was hydrocephalus, the buildup of too much cerebrospinal fluid in the brain.
But, wait, doesn’t hydrocephalus mean that she would have had a large head? Not necessarily.
First of all, she didn’t have any ‘soft spots’ at birth. We had never thought a lot of it, but without those soft spots, a build up of pressure from fluid would not cause her head to get large very easily. The second reason was that there was not an extremely high level of pressure. The medical term used on her report was hydrocephalus exvacuo which describes what happens when there is damage to the brain caused by stroke or injury, possibly leading to shrinkage of brain tissue. Consequently, there is more fluid than normal, and the increased pressure of this extra fluid can cause compression and more damage to the brain.
Next in the line of business was another eye exam. Back in the dark ages of 1988, Chattanooga did not have a Pediatric Ophthalmologist. As luck would have it, the next day there was a Pediatric Ophthalmologist from Atlanta who was running a clinic at Children’s Hospital. He dilated Jessica’s eyes for examination. The good news was that she had some response to some severe intense light which meant she had some light perception. The other news was that he saw optic nerve atrophy, which meant the extra pressure from the fluid need to be relieved to preserve any possibility of light perception for the future.
My baby needed surgery. Not just surgery, but surgery on her brain. They would have to drill a hole in her skull. The thought was unimaginable. A referral was made to a neurosurgeon for a ventriculoperitoneal (VP) shunt placement. But there was a problem…
The Neurosurgeon didn’t want to do the surgery because he didn’t feel it was necessary. He didn’t think it would help anything. Naturally, we wanted to do anything we could do to make things better or at least preserve what we had.
We needed an advocate!
Next… The Fierce Advocate
Sharing joy and inspiration while helping families gain insight and awareness of what everyday life experiences can be when living with a dependent adult-child with special needs
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The bond that you and Jess have is so powerful. You are a real special mama. You are so patient with Jess, and I love how you let her make decisions throughout the day. On those bad days you have Jess talk it out and you help her to cope with the situation❤️
I hope you keep telling this story and that it can reach as many parents as possible who have and will experience some of these problems with their children. So often they feel alone and as though they are the only people who have to go through so many challenges. That you and Jess have lived these many years through the struggles and the fight to get her needs met I know will give others courage. Seeing Jess and her precious pictures will bring them so much closer to her story. I hope you continue this story. I see so many children with so many special needs, and I know how important it is to have someone share not only the struggles but victories throughout the years. I hope it will be all right to encourage some of my parents to read your story.
Marilyn, thanks so much for your words of encouragement. I hope to continue my story for a very long time and I want it to reach as many people as possible. Knowing that our experiences might be helping others makes ours a success story. Please share the stories far and wide!
I too am the mom of a special needs child. I have always admired you and I think what you’re doing with the blogs is great. Very informative. Keep it up. I’m looking forward to the next one. She’s very lucky to have you.
As well as I feel I know your sweet girl I feel like I am reading the story of a stranger! I didn’t know so much of this! Enjoying learning more about her and look forward to more!
Thanks for following my blog! Like you, I think there are so many people that know Jess that don’t know all that she’s been through and how far she has come. I appreciate the role you played in her life! Thanks!
You’re doing a great job here! Keep it up, though I must be very painful to recall all of these hard details
Yes, the recall is a little painful. More so than I thought it would be, actually. I think it is going to be good thing to do though. Thanks for the words of encouragement!