This story was originally published on fosterparents.com.
This is the story of our daughter that died five years ago. It is a very unusual story. She was an extraordinary gift to us.
We came to know her years before we became involved in fostering. An article appeared in a local newspaper describing a young woman (22 at the time) who was living in a nursing home. She was languishing, had no visits in three years, and had not even gone outdoors in that same three years. She was a quadriplegic with cerebral palsy.
My sister-in-law, Mary, and I read the story. Mary's son, my nephew, JJ, was also a quad with CP. We knew all too well that many people didn't recognize that cerebral palsied people most often have normal minds. It's just their cerebellum that doesn't work right, not their cerebral cortex (think part of the brain). Because CP limits the victim's ability to move and speak and express themselves in a mature way, many people overlook their intelligence. After working with Jim for 18 years, Mary and I wondered if this could be this young woman's plight. We pressed in through the newspaper and her appointed attorney to get permission to visit the girl.
The first visit is emblazoned in my memory. We walked into the room to find a wisp of a person lying in a steel baby crib with an infant mobile hanging over her head. That was an indicator of their assessment of her level of development! She was 22 years old! She was biracial with beautiful facial features. Her curly hair was matted, her fingernails uncut. She was the most emaciated person I had ever seen. She weighted only 32 pound at this point, almost dead from starvation. Her eyes were her most striking feature. Huge, brown, distant. She lay there with her fists clenched, tense from hunger, blowing bubbles with her saliva, bored out of her gourd.
Mary and I looked at each other and wondered out loud if she was "In there" or was there truly "nobody home" but Mary said, "wait, Kathy. Give her some time." We studied her there for a few moments. It was like she had given up, like she didn't expect anyone to notice that she understood anything so she just tuned out. I ventured a question, "Quinn, are you in there?"
the big brown eyes blinked and rolled toward me. She locked onto my gaze with obvious intelligence. I asked another question. "If you understand me, look out the window." Zoom. The eyes looked out the window. "If you understand me, look at the flowers on your night stand." Zoom again went the big brown eyes, staring intently at the vase of flowers on the night stand. She was responding with great intensity and accuracy to let me know that she was indeed "in there." Then came the smile, the biggest YES! Her poor little body could muster. Contact! We were instant friends. We had to get her out of this hideous place. We had to get some meat on her bones. We had to.....we had to...
Well, it turned out to be a bigger deal than we thought to advocate for Quinn. People were suspicious of us. Doctors had paper trails to cover up. Staff heads made it difficult for us to see her. But we blundered ahead, bringing all of our children with us through the halls of the nursing home at odd hours. We wheeled Jim in his wheelchair into her room and when she saw that we knew about people like her she began to trust us. We smuggled food in to her and she started to gain weight. She had basically been on a hunger strike. It was dignity or death for her. Apparently she had weighed about 60 pounds when she came to this nursing home and had wasted down to half her body weight within one year. The last two years she had teetered near starvation, being admitted twice to the emergency room for her symptoms. When asked the attending doctor what symptoms she had during those hospital visits, it caught him off guard. "Well, her body temperature was too low, etc...." I said, "What do you think the cause might have been?" He launched into telling me, "You know, I've never seen anything like it except in cases of starvation." Suddenly he realized what he was admitting, and quickly added, "But of course, thatÕs not the case here." He signaled to his nurse, turned on his heel, and walked briskly down the hall where they both disappeared behind a door that slammed shut. Mary and I figured there must have been a paper shredder in there. Quinn probably did refuse to eat some of the time, but the truth was, nobody was spending enough time feeding her. She was difficult to feed. We learned alter that a judge had ordered a special feeding person for Quinn after one of her visits to the emergency room. Quinn gained 19 pounds during the period she had adequate attention. But she lost it again.
One time shortly after we met her I was in the room visiting Quinn. We had just had this "Conversation" where I had asked her if she drank out of a cup or with a straw. She let me know with pride that she could drink out of a cup. So when the aide came in to feed her and stuffed a syringe in her mouth I just casually mentioned that Quinn had told me she could drink from a cup. The aide mocked me and said, "She TOLD you she can drink from a cup?" So I rephrased my statement to, "Well, she communicated it to me." The aide tried to give Quinn a spoonful of food and Quinn with great effort raised her little fisted, crippled hand up and knocked the spoon away! She was furious because the aide had not believed me. She was starving but she refused to eat for someone who would not acknowledge her intelligence or ability to communicate. The aide put everything very deliberately back on the tray and left the room in an angry huff. I could easily see why Quinn went hungry much of the time.
There was one aide that loved Quinn and made extra effort to feed her. Her name was Janice and she will always be mentioned in my writings about Quinn, because she probably saved Quinn's life. She recognized that Quinn had feelings and preferences. She had heard Quinn say a couple of words now and then. It was true. Once in a while a single word would pop out of Quinn's mouth - like "Good" or "Juice" or "Hi." But she couldn't say the words at will. It had to be spontaneously.
We did get Quinn moved. It was a monumental effort that only those who have tried to wade through the legal system can appreciate. But it was the first victory of many for this brave girl. She was a fighter and we grew to love her more and more.
A book could be written about our experiences with Quinn, and some of them are miracle material. But to make a long story short we became her legal guardians. In 1986 we moved to Salinas, California and brought Quinn along. She could not live at home. She needed skilled level care on a daily basis. So she stayed in a local hospital just a couple of blocks from us. We began fostering and adopting children and when we saw the look on her face when we brought up adoption we knew she needed to be our first adoptee. Even though she was legally an adult, she had never stopped wanting to be, "Adopted." She had been an orphan in a children's home until she was 19 and you know what the topic is in an orphanage! Being adopted, getting a family, going home for "Good." Those are the phrases you hear every day from the children.
The lawyer that helped us get our guardianship here in California mentioned to us that it was possible to adopt an adult. Some adults with no family will adopt "Parents." And some adults with no heirs will adopt an adult as their child. It was a totally foreign idea to us when the lawyer presented it, but then it became apparent that this was Quinn's lifelong wish so not? It took some doing and some, but the lawyer donated his time because he loved the idea of Quinn being adopted by us. And so Quinn became Julie Anna Toon. She wanted a new name too. The whole enchilada. We gave her options for her name, some that included her old name too, but she would have no part of it. The new name fit her nicely, even though many hospital staffers resented us changing it and refused to call her by it. Finally we wrote a letter and told everybody that it had been Quinn's decision to change her name and they honored that.
We had ten good years with our sweet Julie Anna. Her life changed a lot. She was well fed. Her hair was braided by a loving staff. Like any typical female, she loved clothes and got more than her share! I did her laundry so nothing got lost or destroyed in the institutional dryers. She was the princess of th ward. She became very friendly and happy. Her infectious laugh resounded through the halls. We brought her home on visits and took her on field trips, but the best was yet to come. Through our fostering of Eddie, a worker from the regional center came to our home to assess Eddie for services. She noticed a picture of Julie Anna on my wall and asked about her. I had inquired about services when we moved to California but was told Julie was not eligible for any This worker assured me that was not true. The result of that visit was that Julie got the chance to fulfill another life wish - attending school. She had been sadly neglected and lost in the system over the years and had never been able to attend school. She had never had a proper wheelchair. She was a last fitted by experts at Stanford. Now she went to school in style in her hot pink wheelchair on the bus! With a matching hot pink backpack! She was thrilled beyond words and woo-woos. She would make this woo-woo sound when she was super happy.
One day the school called and said Julie didn't look well and that maybe I should come pick her up. I figured maybe she had the flu or at the worst had aspiration pneumonia. Oddly enough, my husband was off work that day and he offered to come along. As soon as we saw her we sensed she was dying. Her color was off and she was sweating profusely. That night she slipped away with all of us around her. while Julie had always been a fragile little thing and we talked about her death at times, it was still a shock to lose her. She was always thee, always smiling, always recovering from her near misses. For ten years she had beaten all the odds. I never thought about her having "Work" to do down here on earth. But, of course, she had a mission like all of us do. No accidents in God's economy. Nothing useless to Him. And when her work was done, she went home to Jesus, her savior and friend. There was no suffering. All her tests for infection came back negative. She even went to school on the day she died! She didn't want to miss anything! I think her little heart just gave out.
And that's the story of our Julie Anna. She and everything taken from her in this life - her parents, the use of her body. She suffered rejection, abuse, starvation, and neglect. But she loved life and she gave up her anger and bitterness. She gave her little childlike heart to Jesus when we told her that He loved her and the changes in her were obvious over the years. She became a beacon of hope and joy to many. I was shocked at the number of people who attended her funeral. People I had never met! I felt that I was her connection to people, that she needed me to make herself understood. I had certainly overrated myself! She had managed to acquire quite a following of friends on her own during the time she had spent in school. Bus drivers, teachers, and acquaintances all came to pay their respects and share with us how Julie had blessed them. They said she was like "Sunshine" to them. Always smiling and happy. Not at all like the little wisp we first found blowing bubbles in her own world.
One of the most important things Julie taught me was that if God could help someone as helpless as she was, He can help any of us. He may not make everything perfect for us here, but He doesn't leave us alone. And I know that Julie's life is perfect now. She flew away, out of her wheelchair, out of her useless body and into the arms of her loving Father.
I still miss her. Many people don't appreciate that the grief is the same whether a child is handicapped or not. They think a burden has been lifted when a crippled child dies. And in some practical sense, that's true. The mind acknowledges that, but the heart doesn't. For the parent's heart, a child's death is always the loss of a very special life.
Julie Ann was a very small burden and a very large gift.
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