Those of you who may be joining this journey with me for the first time here on this public site may be wondering about my beginnings. I started a private blog on my school intranet a few years ago when after learning about my Usher Syndrome diagnosis and living with it quietly was no longer possible. It had finally become clear to me that I needed to get help with my mobility if I was to remain independent. I had been aware of Southeastern Guide Dogs in Bradenton/Palmetto, Florida for many years as our family had been raising and continued to raise guide dog puppies for them as a homeschool project. God had quietly placed that job in my family’s life about 8 years before to prepare us for the journey unknown to us that was to come. God is awesome in that way. He always provides everything we need to sustain us. He always has the answer to our problems even before we know we have the problem. As I initially lost much of my sight so quickly, God surrounded me with these people who gave me the knowledge and support that I needed at that time. I didn’t initially want to get my own guide dog despite their encouragement, so I continued to plod along on my own raising puppies which actually gave some support initially when the vision wasn’t as bad and later eventually using a cane.
Finally, that time arrived that I knew would be coming. I needed my own guide dog to help me maneuver the world. I prepared my students and talked with them about the changes to come. They were so loving and supportive. Several asked me to write them about what I was going to be doing. The private blog on the Wynfield School’s private web site, WCA Online, was born to do just that. I told of my fears, joys, and activities in those pages during my 26 day stay in Florida teaching them about the guide dog process as well as the ways I was learning to cope with my blindness. Returning home, I continued to post occasionally about my adventures with my new best friend and eyes, Little Joe.
I had hoped that would be the extent of my story, but God was not through with me yet. What you may not realize yet and many of my friends at the time didn’t realize then was that I had been profoundly deaf for many years, but with hearing aids and my skill for reading lips, it had not been a problem. As my vision continue to decrease, I began to realize that I was losing my grasp on the world around me. Communication was now a real problem. I had friends who meant well, but thought that I should stop teaching and sit and relax. At 47, that was not an option for me. Sitting in a dark room alone for the next 40 years or so didn’t seem appealing in the least. In fact, it terrified me to the point of insanity. That was not how it was going to be. Besides, I knew God had a purpose in all of this. Somehow, He had a plan for me. I was just going to have to hang on and see where it took me.
As I faced the new realities of my life, I made prayerful changes in the school that would allow me to continue to work in the field that I knew best and loved the most. It soon became obvious that I was going to need help if I wanted to teach my special education students properly. For a while, I actually had to let those students go completely while I concentrated on learning new skills and getting assistive technology to help me do my work. I switched to an online evironment entirely for teaching students and counseling parents. I prayed for the day when I would be capable again of teaching one on one where I knew I was so good with God’s help. I didn’t know if it would happen or not, but I hoped and worked hard at what I could do at the moment.
After a while, I realized getting the needed braille equipment and intensive training was going to be difficult if not impossible without help. I sought out help from Vocational Rehabilitation Services. They recommended that I first go to New York’s Helen Keller National Center for the DeafBlind. My time there would not be measurable in length until I actually went and studied. It could have been anywhere from a few months to a year or more. I knew that I didn’t have much choice despite dreading the change. I knew that I would have to decide what to do about the school while I was gone. God had the answer. He sent 4 dear friends who were also parents in my school to help me run the school. We worked hard setting up a system that delegated many of my tasks amongst them. It wasn’t easy, but God gave us the strength and the knowledge to not only keep it going, but also strengthened the educational process that I already had. I left in August 2007 to go to an unknown place, and I left alone for the first time since I had lost my sight. I was terrified, but God was with me, my Emmanuel.
I was there for six months, and I learned as much as I could while there. I continued my blog for my students as I finished my braille training which I had started on my own a year before. I finally learned contracted braille and reading at workable pace. I also learned ASL becoming functional during that short time. I will be learning ASL for many years to come, but the instruction there was phenomenal. I also learned to cook, clean, use braille displays and printers, etc. as a totally DeafBlind individual. I often did my training without hearing aids and with a nightshade to simulate the total silence and darkness that would soon be my life. Two dear friends, Ginger and Elissa, who were my vocational evaluator and instructor helped me and my staff further align the school’s tasks to help me continue what I wanted to do so much which is teaching. I am so thankful for them and what they have done to make me more confident in my role as Principal of Wynfield Christian Academy. I made many other friends during my stay there, and my experiences changed me into a more abled person. I felt like there was a chance that I could finally belong for the first time ever. Being hard of hearing and then deaf, I got along fine in the hearing world, but I never quite fit. Not knowing ASL, I didn’t belong in the Deaf community either, so I was always hanging on the edge. I had not been really conscious of that fact before though I sensed it from time to time. Becoming DeafBlind made me see it with such clarity. At HKNC, I saw a chance at truly belonging in the DeafBlind community though smaller and not always as visible. This community exists sometimes more in the realm of the internet than in the actual world. DeafBlind people are spread all over the world, but only a few places like Louisiana and Seattle have enough to have a physical connection. DeafBlind conferences and the internet listservs are our connections. HKNC is often the first connection one would have to this world. Everything about the place caters to the DeafBlind person. You can feel safe there. You can fully communicate there.More importantly, you are not only heard there, but you are listened to there. As much as I wanted to leave to get back to my family and school and my life, I also didn’t want to leave. I wanted to hide there. Returning home, that desire became even stronger, especially after having a bout of illness in February 2008 that took almost all of the remaining residual hearing that I had, and the vision loss which was decreasing seemingly almost everyday. No one in my family, friends, school, or church could sign to me. The Deaf at church could, but I needed tactual ASL more and more which they just didn’t feel comfortable with yet. I actually began to feel like I was becoming invisible to the world as people lovingly welcomed me home and tried to communicate, but become aware that it wasn’t possible. Soon, people tended to talk to people who were around me and not to me. It was really as if I had just disappeared from their view, and they had disappeared from mine.
God provided again. He sent me a Special Services Provider (which is an assistant to a DeafBlind person in interacting with the world in any way needed) in a way through a friend that had already volunteered to help with the school before I left for HKNC who I could still understand with patience and time. Sharon is my link to the world. She leans in close for me to use the last of my vision to read her lips. She is also learning to sign better each day. She speaks my words and relays my thoughts to a world untouchable. There is so much that I owe her and will never truly be able to repay.
Well, for now, my staff and I run my little school and are still trying to raise money for my assistive technology. My SSP, Sharon, and I seemingly fight the world one enemy at the time as we try to get the world to understand that I am still the woman I was and in some ways, am even better. Day to day I face the joys and struggles with my family, my friends, my Joey, and Jesus. No matter the problem, God is the Hope of my world. Let him be the Hope of yours.
In the very near future, I will bring a synopsis of my stays at Southeastern Guide Dogs and Helen Keller National Center to this now public blog. It was the enjoyment of the private blog that led many who were guests to ask me to make it public. It was a request that pleasantly surprised me but that I am more than happy to grant.
Now on this most blessed Christmas Eve I pause to thank my Savior, Jesus Christ, for all that He has done for me with the most important being his willing gift of death on a cross for my sins and the grace to allow me to accept his gift of salvation. He is my sighted guide, and I with my eyes through Joey, follow Him with all my heart on this journey though it be through the dark silence. I do not fear for He promised to be with me even through the valleys and the shadows of death. He fills my closed ears with his words of hope and strength. He shines his light of love through the darkening curtains of my eyes. I will never be alone.
I do not have any gifts in my hands for my family and friends this year because shopping in stores is a luxury these days and difficult at best. Internet shopping which has been my friend in recent years has become more difficult and even risky as I wait to gather the funds needed for my technology. The only gift I have is what is in my heart. I offer it to you freely. Most of you can’t read my hands when I say that I love you, but I want you to know that I do. I dream of the day that my ears and eyes will be freed at the gates to Heaven, so I can truly talk to you and see your faces, but until then accept the love that I offer and the prayer in my heart that you should know Jesus and find that you can see Him as I do each day. He is with you. If you don’t know Jesus, I pray that you will ask Him to become your sighted guide for all our spiritual eyes are blinded without Him.
Merry Christmas to all and may the peace and joy found only in Jesus Christ be in your heart. I pray for you to have His blessings in the coming year.
Renee’ and Joey