In my kaleidoscope of delightful experiences were the Rocky Mountains just a 20 minute drive away, the plains of Kansas and Missouri on the way to our Grandparents Walker for Christmas, all covered with snow. There were Museums and Dinosaurs, school and Brownie Scouts and then Girl Scouts. There was Church and Bible School, and there was the Symphony in the park and every book available to me from the library. I could go on with the richness of life, full of so many wonderful, wonderful things.
But growing up in the nest of our family's love was the best thing ever. Our parents always shared their own Aunts and Uncles with us, and we had to reach adulthood to realize that they were Great-Aunt so and so to us in truth. And while most of our relatives were in Texas we had a special Aunt in Denver who happened to belong to our father. Aunt Jessie was a twinkly, delightful woman, married to Uncle Smitty who died when I was about 4, so young that I just have a few memories of him.
They had a daughter, my father's cousin, Barbara, who happened to be deaf and who married a man who also was deaf. So our Second Cousin had a daughter, Laura, who is probably one of the foremost American Sign Language teachers in the US. She grew up bilingual, with a grandmother who helped her straddle the two worlds. Laura and I were close to the same age, and she and her family frequented the bigger family gatherings at Uncle Rufus and Aunt Esther's. Uncle Rufus was brother to Aunt Jessie and our Grandmother Walker.
On Sundays, we would often gather for a wonderful meal of friend chicken, mashed potatoes and gravy, and green beans and unequaled Granny Johnson rolls. (They were made by Aunt Esther's mother, Granny Johnson, while she was still living.) We children were always expected to help clean up.
When I was not big enough to stand at the sink to wash or rinse dishes, I was allowed to stand on a chair to help out, and one particular day when I was standing next to Aunt Esther, who we all well-knew was blind, I realized that not only was she blind, but that she could not see whether or not the dishes were clean. Yet as I rinsed them, none were dirty and none needed to be sent back for another going over, even though that might occur at our house, where Nobody was blind.
So, to my mother's consternation, I asked Aunt Esther how she could tell if the dishes were clean. Blind Aunt Esther could easily hear my mother's humph at my social faux paux, but she good-naturedly said, "Here, honey, now close your eyes and I will show you" and she guided my hand over the surface of the plate. I learned that day that seeing wasn't always necessary to see.
But in Sunday School our story was about a blind man and Jesus. Although those wonderful miracles occurred when He was on the Earth, seldom in our times had many really heard of the blind being healed. But there was at least help nowadays for the blind, including a special way of reading. And to prove it, they gave us a memory verse both in printing and in Braille. I was too excited as I shared it with Aunt Esther the next time I saw her: Now she could read!
Of course it was disappointing to know that she had only been blind for a few years, and that while she could read when she was sighted, she didn't automatically learn to read Braille when she lost her sight. I was no help but I tried to learn from the little Braille verse in hopes of someday helping her.
Meanwhile, Aunt Esther went on countless outings to the mountains, where I gloried in the beauty of God's creation and reported it to anyone who would listen, including Aunt Esther, who would probably rather have heard it all for herself. Somehow I did learn to be quiet and appreciate the gentle growning of tall Aspen trees in the wind, and the rattling of their coined leaves.We were greeted with the sounds of the birds, and the rivers and streams. And with the goodness of simple foods prepared by our mother with Aunt Esther's assistance, and cooked over fires in the campsites at Evergreen and Estes Park.
Laura was there many times with her parents, and with Aunt Jessie. Her mother and father could not hear the birds or the rushing water, but they could feel the breeze that rustled the leaves and enjoy the cold running streams. They could appreciate the beautiful landscapes and skies, and share our company. I was so lucky but I really thought everyone had both the blind and the deaf, whom Jesus blessed, in their families as well. Signing wasn't easy, but over a few years both me and my sister learned to sign a little, and then, we moved further away, and except for a few words, and an occasional letter in the alphabet, I forgot most of it from lack of use.
Time went by. Aunt Esther, Aunt Jessie, and all of the older generation were gone. I was now a young mother with four children. It had been a walk in the park with the first two, Beckie and Tim. But during my third pregnancy I was impressed that she would be born with some special needs, and that it wasn't going to be any walk. I felt resolute that there was nothing that God and I couldn' t handle. When she was born it was obvious to me that we had some problems, but it was as though every doctor could not see her needs. I had to become a warrior, a crusader to get basics like speech therapy, eye surgery, and occupational therapy for her.
I slowly became a less than happy mom. Maybe I was an angry mom. I had truly forgotten how to laugh. When she was about 3, I told my husband, well, it is time for number 4. And it was. As soon as Deborah arrived on a sunbeam, smiled directly at her dad, locking eyes with him and him alone, I began to stand back in awe. She was a dynamo in our household. Everyone delighted in her company. She kept us in stitches, and she would never allow Rachel to sit back as she had before she came, observing the neighborhood playing in our front or back yard. She was one of the Little Rascals once Deborah hitched onto her, and watching, I remembered, oh, yeah. Laughing is good. Laughing is GREAT!!
But Rachel's future was uncertain where we lived. As of that time New Mexico had not yet passed Public Law 94-142,which would have allowed schools to accept matching funds for Special Education if they complied with certain rules.They were the only state in the union not to have met the needed changes for the sake of impaired children. We became part of a parent support network, and met a number of other families whose children included a variety of special needs, but many were on the Autism spectrum. We educated people locally, speaking to the Lion's club, the Kiwanis, and others about the need for more funding for special needs students.
The law passed, and I attended the first annual New Mexico Governor's conference on Children with Chronic Impairments in 1985. As a delegate, I worked on a committee that determined that parents and families would be the first line of priority in determining what was best for the affected child, not the state.
Over a 3 day period I heard many stories and learned so many things that could be done. But getting to know others who dealt daily with chronic impairments that so far exceeded my own experience gave me some perspective on the difficulties our own family was facing.
I could see one thread very common in many, many of the affected families It was not hard to see the wear and the abject fatigue on the face of the mother whose child lived at home on a ventilator, knowing the inevitable outcome would be an early death. Yet for the majority of us whose children would certainly live, we mourned the quality of their lives both now and in the indefinite future. And every day it would seem, some families would wake up, put on sackcloth, and walk quietly and mournfully around the Altar of the Diagnosis they were dealing with. They seemed never to be far from that altar, in a track that prevented them from having serendipitous joy and the spontaneous lives they had known before.
They had forgotten how to smile, let alone laugh.
When I came home, my husband, Eddie, and I talked at length about this experience. We knew what we needed to do. The support group had helped us make a choice to be effective and to become involved. We had a big family and not so much outside time if we were to see that our son got into Boy Scouts and our eldest daughter got to piano lessons. And I was in school to become a nurse.
Although we cared deeply for our friends who needed to stay, we knew we were ready to leave the support group. We chose not to build the altar. Whatever it was in the end that could explain Rachel's learning differences and small motor difficulties and a boatload of other struggles she had, we were going to be able to say that all of us went together to the mountains, camped, fished, hiked, sang in the car, and had a good time.
So we went across the nation to visit grandparents. We went to ballets at Christmas, visited Santa, played Ding Dong Dash to leave brownies and other goodies at our friends' homes, and attended innumerable school and scout functions. We visited orchards to pick apples for winter pies, and grew vegetables in the ample garden that we canned and froze. We visited potato and onion sheds and put them away for winter as well. We did just exactly what we had always expected we would do: we lived and loved and laughed.
My youngest brother had married a beautiful, wonderful girl, Allyn--right after her recovery from having surgery on her pituitary to remove a tumor. She brought a little son, Ian, just adorable, to the marriage, and we were glad for Rob, since they knew she could not have children while taking the medicines she always would have to take after her surgery. No problem, they would adopt, we all knew, and meanwhile we would welcome our new nephew and grandson and cousin into the big, rambling family.
Subsequently we transferred to Texas in search of a better educational and medical environment for Rachel. Work brought Rob and Allyn as well. They built a life, a successful business and a house together in anticipation of the children they hoped to fill it with.
Our family had expanded exponentially in the 20 years since the picnics in the Rocky mountains. They rolled right along with the rest of us into a happy mob, glad to be together often, most all of us in Texas now. Finally the day came when two beautiful children arrived to complete their dreams. We all shared the joy in our brother's household.
But within months of bringing the babies home, our sister-in-law was having sudden, blinding headaches. She was admitted to the hospital where she learned her pituitary tumor had returned. The surgery involved untangling its' tentacles from her ophthalmic nerve. She lost most of her vision her right eye immediately.
A truthful doctor did not give her long chances on retaining vision in either eye. Rob was at a loss for what to do. Her surgery had saved her life but her new life would be far different. Allyn thought mostly of her family and how her disability might affect her ability to care for a newborn, a one year old, and a young teenager.
She told me, "I'm afraid they will take the children back!" For a millisecond I could understand her fear, and then with clarity I looked through the prism of my early childhood. "No, that would be ridiculous!" I assured her. "The government does not take children from their biological parents who happen to become blind, and you can be certain that will never, never happen here."
Rob called me, weeping with sorrow over her lost sight and their lost life together. They had done so many things and now she was blind, he said. Now they would never have the joy they had had before. "Oh, yes you will," I said. "You are going to do everything you did before, only she is going to be blind. Remember Aunt Esther? Remember Dick and Barbara?"
They all knew how to laugh. Neither we nor they were diminished by their presence on our adventures. We were all, in fact, enriched by sharing the time together.
My brother did learn how to laugh again, but it required some considerable thought, planing, and effort. He shortened commutes to and from his outlying territories by learning to fly, and then bought a plane. Then he went further, making travel for work in the summer a family affair by purchasing an RV that brought the whole family together for trips that took them all over the nation. Just like at home, Allyn had good and bad days, but she was there, and when the days were bad, her bed was right there, too. Nearly every picture we have of Allyn shows her damaged eye, yes, but it is eclipsed by the big, genuine smile of the moment.
Learning to relish the joy in life didn't make the serious problems of life go away, but it tempered the prism of light through which he saw his burdens. It was not all sorrow, and there was a lot of fun and a lot of pure joy along the way.
Life continues to offer each of us challenges, many of which we feel inadequate to face, because we lack experience. Yet after we become experienced, we cannot help wanting to ease someone else's path. Finding the everyday fun is one of the best things we can do for one another It doesn't have to be slap-happy, just happy. Banish the altar of woe. Watch the Blues Brothers or a Youtube episode of Bat Dad. Make room for fun, plan for family time and guard it carefully. Bring friends along if they lift you up.
Don't be afraid. When I started laughing again, it felt funny. I mean it felt weird to have the corners of my mouth turned up in a smile. I felt almost foolish, because I had grown so serious and resolute before. God is GOOD. He wants us to enjoy our lives. Trust that He has this difficult, challenging situation, and that nothing bad will happen if you don't have all the answers now or later.
It will be like this: You are going to do whatever it was you had planned to do before the challenges of life seemed to derail you. But God does have it. You can go ahead with your plans, resume your beloved activities that brought you close before. And you are going to do it all while your loved one has health, mental health, or learning differences. None of those things is going to take precedence in your life or the lives of your children. What matters is the laughter and the love and belonging you will
make along the way.
In loving memory of Deborah. She taught us all how to laugh..
