Intracranial hypertension literally means that the pressure of cerebrospinal fluid (CSF) within the skull is too high.
Here's Jenn after her 14th surgery.
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Latest News
July 26, 2009
Jennifer has had several trips to the hospital since the last update. The latest one was to check to make sure her shunt was working. She had 13 days with no eyesight at all along with severe brain pain. So they new something was wrong. After a little head shaving & fluid placed in her shunt via her brain, it unclogged the shunt & made it flow great. The problem is the tubbing. It rubs up against her other internal body parts causing pain & the flow to be slower than it should. But the good news is the shunt is working. She has a very small tumor on her pitutary gland that causes all kinds of hormal problems. She also has the tube rubbing up against her thyroid gland causing problems, so currently these are the issues that she is dealing with today. She is a trouper though.
Dog:
Jennifer, Brendan, & Daddio went for a visit to the Marin Guide Dogs For the Blind (www.guidedogs.com) for a lesson on how the school works. It was very exciting. Unfortunately they weren't able to do the whole days worth of events, including taking a dog on the bus to go to down town San Rafael & walk a dog & see the entire beautiful grounds, but they will return for another visit soon. They did however take a quick toor of the bedrooms, the really pretty meeting room, along with the green & gorgous grounds around the living quarters. They also learned that Jennifer must pass a test in order to get into the school. The school lasts for 28 days & Jennifer will live there by herself with her new dog. So she is working hard with her teacher, Canaan, to learn how to walk alone, and do other tasks that involve being more mobile so she can have her own dog. Jennifer is very excited about the whole processes. She has walked 10 blocks so far.
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 Jenn in Summer of 2007
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Learning to Live In Darkness
I have been blessed to have gotten connected with the California State Department of Rehabilitation who has sent me Canaan Richards, my sight coach, or my teacher as I like to call her. She is so much more than a degreed person who teaches me how to live blind. She listens to my troubles, my aches & moans, she handles cancellations due to my pain without any notice. She just says " feel better Jenn, see you next week."
Jennifer and her Braille coach Canaan.
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Canaan is a confidant, a counselor, a friend. She is the person who walked into my life and gave me hope when I was truly ready to call it all quits. I was more depressed than I ever knew was possible. I needed someone to help me come out of the darkness & into the light & here, my case worker, Joan Graveson, put this angel of light and hope into my life. Right away she told me my life is not over because I am blind most of the day.
She told me that she was going to teach me how to get through my days; I didn't have to sit in total blackness in a chair for hours & hours crying in despair. She was going to help me be more self sufficient and not have to have my caregivers do everything for me.
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So the first thing she taught me was how to find things on a table. The technique is called "soft hands." Then she taught me how to walk with and without my cane. She taught my caregivers the technique of being a human guide. Boy did we all have a lot to learn. It's been about 9 months now since that first visit with Canaan and we have covered all kinds of things. All of the things I learned in the beginning I still use today. There are 2 profound gifts my teacher has given me; hope and freedom. I started to practice braille using tennis balls in muffin tins.
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 Brendan and Jenn
I can do the dishes, make my own cup of coffee, vacuum, dust, I even have made lunch for Dad & I, a good old messy peanut butter & jelly.
I must admit, I am still a little lazy, a little scared, & sometime even depressed and feel hopeless, but I know if I continue to use the tools Canaan teaches me, one day soon I will be crossing the street all by myself & reading Brendan a book in braille. I must push myself to practice what she teaches. I believe she is an answer to some of the prayers that so many have prayed for me. Thank you Joan and Canaan - my hope givers, my freedom providers. The next thing we are going to learn is doing the laundry! I can't wait & neither can Brendan! We have set many goals for my future. I know with Canaan, I can continue to learn how to live this new way of life.
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The confidence I received from Canaan gave me the courage to prepare for a big event; Brendan's daughter Megan O'Hara Seller's wedding. Canaan was kind enough to take my father and I to the church and the reception site so I could practice how to move about each location on Megan's big day without any fiasco or making a scene taking the attention off the bride and groom.
This is when I really began to trust Canaan and know she would work out so well as my teacher. She offered to teach me my first big lesson in public with Dad on my second or third appointment with her. So some of the things we practiced were walking down the aisle as I would be escorted, sitting down in the pew with no clumsiness, having Dad be there to be my hero if I just could not handle the emotions of Megan marrying Harry Seller and the emotions of not being able to see her do so.
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 We practiced this over and over again. If I felt myself begin to have a big break down, I would call upon Dad and he would simply come and get me from the front pew and quietly escort me back to a place Canaan designated as the safe, calm place. We were hoping for the best, that I would be able to witness the most joyous occasion with sight, but if not it would be best to have an alternate plan. So we practiced.
Then we drove another 20 miles to the reception site and practiced similar things there.
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The most important; how to go the bathroom in a public place. I had never done this before by myself when I could not see. So again, I learned a new technique called "trailing." This is where you literally follow the walls until you find what you need. I needed to find the toilet, & all the necessities there and then wash my hands and find my way back to the reception where Dad could escort me back to my seat.
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Once again, Canaan calmed my fears. I was really scared I would look like a fool and make a scene on my princess's wedding day and by practicing over and over, I felt confident and so did Dad.
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So as with any wedding, there was a lot of stress leading up to the big day, but we all managed to make it to June 21, 2008. Everything was set. The guests were arriving, the groom, Mr. Harry George Seller, was smiling from ear to ear with his Best Man on the alter waiting for his bride. The bride sat next to her nervous father in a limo full of gorgeous ladies and it was show time. Oh I will never forget how beautiful my princess looked that day or the look in her mom Marcia's face, but especially the happy, yet sad look in my husbands face as he was about to give his little girls hand away. I had my sight. I was so happy that I could witness the joyful day. I grabbed the arm of the nice young gent who would usher me and together we walked down the isle. He sat me and the rest of the procession came. Brendan giving his daughter away was so endearing & I got to see it!
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The priest began and boom into blackness I went, no more princess to stare at, no more groom to smile at, I froze and the tears I already had from the joy of this life altering event started to become bigger and bigger. I grabbed Grandma Mary's hand and took a deep breathe. I waived for Dad to come. It seemed like an hour before he came and got me, but he calmly walked me to our safe spot that we rehearsed over and over with Canaan. Oh how glad I was that we did or I would have really lost it from my selfish sadness that I could not see my Meg kiss her Harry to begin their married life. So Dad & I sat.
Then after about 5 minutes or so, I said to my Dad, I refuse to allow this blindness to take away from the day we all had been waiting for. So, we went on to the reception to have to most delightful time celebrating with family and friends. Practice makes perfect, I even went to the ladies room by myself. Half way through the reception, like a miracle, my sight returned. I got to see the bride and groom enjoy themselves. What a memorable day I will always hold dear in my heart.
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Guess what!
Megan O'Hara Seller is due right near March 17th, St. Patrick's Day - the O'Hara spirit continues on! My dear husband and I are really excited about welcoming our grandchild!
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Megan & Harry Seller are waiting to know the sex of their little miracle & we are getting more & more excited as the day grows nearer. Grandparents - another chapter.
What is it like to hold a little baby but not be able to see it?
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