Our mom's story is one of not only courage, but most importantly, of family devotion and the love of living. The message we want to convey is joy and peace of mind, regardless of chronic illness. So many seem to sink into the depths of self-pity and depression after diagnosis, angry about their sorry lot in life and relinquishing their chance at happiness. Yes, I say "relinquish", for we always have a choice. None of us are victims, unless we volunteer ourselves to be so. The most valuable lesson our mother blessed us with is the knowledge and example that we have the ability to live contentedly and joyfully, irrespective of life's uncontrollable circumstances. The key to happiness, no matter what your problems may be, is a life of selflessness and love. Our mother devoted her life to her family, always thinking of us and how she could be a blessing in our lives. She was an angel of God here on earth, just as she is now in heaven. Through focusing on others, one has little time to think of their own complaints and discomforts.
Yet, it is also our hope to convey the seriousness of Systemic Lupus, the disease which took our mother's life and tries to take over my own. Please keep in mind as you read, that she kept a smile on her face until the day she left us, through all the physical struggles she faced.
Our mom, Annette Leach, was diagnosed with Systemic Lupus (SLE) in 1984, just two weeks before I was diagnosed with the same disease. I truly believe my illness upset her far more than her own. Being a mother now myself, I understand the heartache she felt for her child. She had already been suffering from Retinitis Pigmentosa, a disease of the eyes which causes gradual but inevitable blindness. The courage she displayed surpassed that of any individual I have ever known. Her illness escalated in 1994, just after spending seven months of caring for me on a daily basis, after the birth of my son, her only grandchild. My own Lupus-induced illnesses rendered me disabled following child birth. Though she always denied it, I still believe the added physical stress of being my care-giver and the emotional concerns she had over my well-being is what exacerbated her illness.
As her disease progresed, mom began having severe chest pains and then broke out in a terrible rash which covered her entire body. Her physician was never certain exactly what type of rash it was, but the itching was so severe she would wrap her body in gauze to keep from scratching until it bled. She was finally admitted to the hospital and with the use of steroids, this condition improved and was brought under control. The doctor told us then our mother had less than six months to live, yet she insisted that she would live to see her grandson graduate.
The following three years were a living hell for her physically, yet it never robbed her of that lovely smile and tender heart. If anything, I believe her illness made her love even deeper, as she realized how precious our time here really is. Complications began with one heart attack after another, until she eventually experienced a total of nine. She continued to lose weight, no matter how much she ate, which is a common problem with Lupus. Her doctors were helpless at that point, unable to do anything for her but try to ease her pain. Her sight was quickly diminishing, which bothered her more than all of the other problems combined. When this condition first began in April 1978, she was told that she would be completely blind by Christmas of that year. Yet, she stood firm in telling her physician that she would see her children married and see her grandchildren. Her faith and determination were unbeatable. Though her sight steadily worsened, sixteen years later, she had enough vision to be able to see her grandbaby's face when she held him up to her close.
Her condition quickly deteriorated from that point. 1995 brought the necessity for an oxygen tank wherever she went, due to complications from the many heart attacks and congestive heart failure. With only 15% of her heart's functioning capacity at work, her Cardiologist couldn't explain how she was still alive, except for her determination and love of life.
Side-effects from medications caused additional complications. Plaquenil and high doses of Prednisone caused drug-induced diabetes. This was brought under control as her medications were decreased. The next year found our mother bed-ridden at home, and when she was able to get out, she was forced to use a wheel chair. Yet, even life confined to a wheel chair and an oxygen tank as her constant companion, she still refused to allow these inconveineces to interfere with enjoying and concentrating on her family. She would call me every day to ask how I was, but never complained about her own condition. Her focused remained on how she could be a blessing to us. Seeing her family as much as possible was her greatest joy and fulfillment, so I made it a point to bring her grandson to visit everyday. It seemed that my son was her life-line through the last three years she was with us. Each time she had a heart attack, she would start talking to Zachary (her grandson), even though he wasn't there with her. I tried to tell her that Zach wasn't there, but she always insisted that he was. She said, "Shawna, he is right here with me, taking away my pain. He tells me how much he loves his grandma, and that makes all my pain go away and gives me the strength to fight for my life." After her release from the hospital, I asked her if she remembered this. She said she was aware of every word she'd said, and that feeling Zach's love present within her was what brought her through each heart attack.
In 1997, mom began experiencing kidney failure and went into two different comas. Home Health Care nurses made their daily rounds to her house. She no longer had the strength nor energy to walk from one room to another. And as I said in the beginning, through it all, she never lost her beautiful smile. Right up until the end, she maintained her faith that she would survive until a cure was found. All I wanted was for my mamma to feel better, and she would always assure me that one day she would be free of all the pain.
She was as strong in wisdom as she was in love, doing the best thing any of us could do for our families at our time of death. At the time, it upset me so much, but now I realize how thoughtful she was being. She insisted that we talk about her death before it happened and how we would deal with it. She made arrangements not only for her funeral, but for the grieving process she knew her family would experience. It was so incredibly difficult for us to talk about with her, but today I wish I could thank her for this blessing. Having us talk it through with her gave each of us the opportunity to make our ammends for any past regrets we had, and to tell her how much she meant to us. And, of course, she took those times to assure us how deeply she loved us. Through this process, she helped us deal with death before it happened, and she did so because she didn't want her family to suffer once she was gone. So she used her last days to hug us and let us know, as she had always done, that everything would be all right.
Though our mom was bed-ridden for the last six months of her life, on her grandson's 3rd birthday, only three months before her death, she refused to miss his party. With her portable oxygen tank and wheel chair, barely able to see, she was the first one to arrive and the last to leave. Attending my baby's birthday was more important to her than concern for her own well- being. Through her selfless examples, she showed me the meaning of true, unconditional love -- a rare gift which far too many people will never experience in their lifetime.
The last day of her life, I had called to check on her, but she refused to talk to me about the pain she was experiencing. She just told me how much she loved and adored me and all her family, and that she would soon be able to see and live without pain. I think she must have known the time had come and she didn't want me worrying about her. She was always afraid that if I worried about her, it would make my disease get worse. She fell into another coma that day, and I went to visit her that evening. She died at 8:30 that night, shortly after I left. I believe she held on as long as I was there, for even in death, she was thinking of my feelings and didn't want me to see her die.
It was the most difficult for our dad to accept that he had to go on in life without his wife of 29 years and somehow find a new way to live. He stills struggles with the loss everyday as we all do. His deepest regret was being unable to take her pain away. He is going on with life but not without thinking about and missing her everyday. They had a love like most people never find, and my brother and I are so lucky to have grown up with so much love and family loyalty. We are so blessed to have been raised by devoted parents, who taught us to cherish and honor our own families. We could never thank them enough for being the truly wonderful parents that so many children now never have. I only hope that I can be half the parent to my child that both of my parents were and are to me. Our mom was, without a doubt, one of the most wonderful people in the world and I wish you all would have the opportunity to know such woman. She will live in our hearts forever and always be our guardian angel, just as she was throughout our whole lives.
Thank you for taking the time to read this story. I hope it will help you see that although you or someone you know suffers from a disease, it doesn't have to rob you of happiness and a loving, tender heart.
