Back in the garden. More time to think. I began thinking about perhaps the second most influential time in my life since my marriage. That time began the day that we took our children to the Utah School for the Deaf to have the diagnosis that the U of U doctor had given us confirmed. It was at once enlightening and frightening.
Before we walked into the Deaf School infirmary, the U diagnosis was just a very real possibility. When we walked out, it was oh so very real. Yes, Heather was severe to profoundly deaf and Jason was profoundly deaf. I looked up at the sky and said, "What will He ask of us next?" Ten days later we found that answer when Jamie died. We never knew for sure whether she could hear because they were unable to test her adequately because of her age.
We got straight into the truck and headed for a somewhat normal weekend vacation trip to Idaho with Ken's parents. That would be our last feeling of some kind of normal life for many years. We had no idea what the diagnosis of deafness would mean for us or our children but we were soon to find out. I actually remember kind of apologizing to my GP because the kids were deaf and I had no clue what that meant.
It would mean hours and weeks and months full of hearing tests and hearing aids. It would mean the same for speech therapy. It would begin a long search for everything and anything that would help our children get into a world that was then closed to them. It would mean trip after trip to the legislature in an attempt to bring some transparency and accountability to USDB. It would mean eventually getting their superintendent fired.
The frustrations I and the children were feeling would bring a battle against the Utah system of oral education for the deaf. It would mean insisting that we be taught sign language whether USDB liked it or not. It would mean newspaper and TV spots and being labeled an "intense parent" by the school district, USDB and the state. It would mean taking our children before the Alexander Graham Bell board seeking scholarships, winning them and then having our children present their acceptance speeches in Sign Language before an oral society. Of course we were not popular there. It would mean an "expert" doctor telling me that I couldn't use sign language and oral language in the same home. When I asked why, he had no answer.
It would mean finding about 30+ children in the Alpine School District in need of services for the deaf and fighting the district for years to get teachers and classrooms and books and materials. It would mean Jason going to 6 different schools in one year before a permanent classroom was found. It would mean Micah sitting on a bus for 3 hours a day because they
could not go one block out of the way to bring him to our house. It
would mean putting a stop to that! It would mean Heather having her hands slapped in her oral classroom because she used signs. It meant sitting in hour after hour of meetings while everyone told you why it couldn't be done. At the end, it meant my dad standing up in the very fancy and well equipped Alpine School District Board Room and saying, "What in the hell is wrong with this room!!!" Suddenly, it became a possibility that we could find some room somewhere. It meant knowing that the district rated education for a deaf child on the same par as education for four hearing children.
It meant saying our prayers and begging for money and ways to get things like very expensive hearing aids. It meant dropping to my knees when one of those aids was lost and I knew there was no money to replace it. It meant asking my dad for help for an Apple II computer when I found out it had a speech pattern matching program. It meant him buying that $2000 computer for us. It meant taking 2 very confused children to a deaf camp in Oregon a few days after dad died because we were told it would help. It meant leaving them with strangers for 3 weeks. Dad paid for that too.
It meant divine intervention on multiple occasions. It meant going to church headquarters looking for a program to use in the "deaf primary" we envisioned in our heads and being given a program for foreign language seminary. We started our own little multi-area primary and got in trouble because we didn't go through one "appropriate" channel. We asked for forgiveness. It meant having the first child that we know of who received all of his temple ordinances in his native language, American Sign Language.
It also meant that many would abandon us because they didn't know what to do or say. Friends that I thought were real friends would call me and tell me how stupid I was for letting Jason learn sign language. All I knew is that he needed language, any language so that we could communicate with each other. It would mean labeling everything in our house to help them learn that words represented things. It meant hour after hour at the kitchen table doing homework until I thought I would scream. It meant always being the "go between" sign language interpreter even though my sign language education consisted of learning from videos of 50 food, furniture, travel, etc. signs. It meant being corrected all the time by deaf adults and smiling and saying thank you even though I felt humiliated.
It would mean dealing with the many times my children asked and sometimes still ask me why they had to be deaf. It meant saying to them, "I don't care if you are deaf, you still have to do this!" or "I know English is your second language but you still have to do this." It meant explaining to my children that yes, their children did sound good when they played the piano or violin or sang. It meant the heartbreak of knowing that some of my kids would never hear the music or their children or the birds singing. It meant dealing with my only hearing child desperately wanting her brothers and sister to hear the music she wrote and performed but knew they would never hear and dealing with all the times she felt "left out" because she was the only living, hearing child.
It meant a decision to not take a seminary teaching job, a thing Ken wanted badly, because we knew that we were going to be sent to a tiny little place with no deaf services. It meant deciding not to leave the state for deaf education. Many times I questioned myself on this one. There were a few states with much better services than Utah. Would the kids have been better off had we chosen this. Who would fight the battle for better deaf services both in the state and in the church if everyone chose to go elsewhere and do other things. How would things be made better for all those ignored, mistreated and forgotten children if we chose to leave. It wasn't in my program!
I could write a book of all the things that finding our children were deaf would mean but I will close with all the important ones. It meant that I DID learn first SEE Sign or Signing Exact English. I am not fantastic at sign but I am still learning ASL. It meant that I did push through the pain to bring school and church to many deaf children not just my own. When my sweet well-meaning mom said to me one day, "Vea Lynn, you cannot save every little deaf kid!" (she was trying to protect me) it meant saying back, "No I can't but I can do something for those in my circle of influence." and I did! It meant that I made a choice to believe that the very most important investment you can make is in the life of a child, any child but first your own.
It meant working with people like Bobby Giles and Dale Link, Rob Smith and Teresa Bartholomew, also John Carmack and Hyrum Smith, Doug Hind and Jack Rose, Karen Burningham and oh so many others. It meant helping to keep little Camp Liahona running by trying to help find funds and places to hold it. It meant finding the little camp near Tooele that became it's home until it died. It meant that my deaf children would meet their wonderful future spouses because of the programs offered by Camp Liahona and Especially For Deaf Youth. It meant I would grow in ways that I never would have grown. It meant meeting tons of absolutely amazing people that I never would have met otherwise and it meant standing in my unfinished kitchen one day as my carpenter asked me why I continued to deny the very thing I was sent here to do. It meant standing in the Deaf Ward one day and realizing they didn't need us any more. How amazing is that!
It means that my sons had the opportunity to go on American Sign Language missions to New York, Chicago and Portland. I means today that the deaf have every opportunity in the church that anyone else has of having all their ordinances done in their own language including temple work. I will never forget the first temple session I attended done fully in American Sign Language. My deaf children have been temple ordinance workers, Relief Society presidents, Branch President and held a multitude of other church assignments. They have been filmed to make DVD's for lessons, church materials for the deaf and as conference interpreters.
Most of all, it means my very greatest art works ARE my children. I always wanted to be an artist and I helped to create some masterpieces in ALL FIVE of them. They are contributing, useful, hard working, loving, kind members of society of whom it is always being said, "They are amazing." Now, I know that Ken and I didn't do it all alone and we are very grateful to everyone who helped. They did come to earth with their own personalities, brought with them from the other side. They are valiant here as they were valiant there. Forgive me if I like to think that I had some small part in making five children, three of them deaf, the people they are today. Thanks Heavenly Father for giving me this long walk and helping me take it. It changed my life and I will be forever grateful.
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