Open Letters to Parents of Newly Diagnosed Children From Mary Jane Ausse Dear Parents, My name is Mary Jane Ausse and I have Type II SMA. No matter how one looks at it, being told your child has a serious debilitating condition is a devastating blow. My heart and prayers go out to you as, realistically, it will be a challenging road ahead. But, however long and hard the road, it is not without sunshine and rainbows ... and HOPE ... hope for the very best life that your child can have. What that is, we truly do not know. You as her parents can only encourage and help her reach her potential. Certainly, the doctors DO NOT know what that is! I am 51 years old. My parents were told I wouldn't live to puberty. My father really never got over it and was always waiting for me to die. He's been dead 16 years now. SMA is such an individual disease, even within its so-called categories of severity. I have never walked, stood, or crawled, nor have I ever been able to dress or care for myself. Through the years, I have lost some arm/hand/finger function and some torso and head balance, but I'm still sitting (barely) in my power chair, and I am able to type my own messages at the keyboard, though it is tiring. Yet, there are others with this disease who have had a similar early onset as I but who have lost hand function 10 years ago and who are essentially lying down in an adapted wheelchair. The progression is so different with each case. Only time will tell. The best advice I can give is this: DO NOT live each day as if your child is going to die. Enjoy her infancy/childhood and her accomplishments as you would any other child, whatever they may be. She may not learn to walk, but she still may turn out to be the brightest kid in her class. Also, discipline her as one would a "normal" (is there such a thing?) child. If she ends up being overindulged and spoiled, she'll have two handicaps to live with, one psychological and the other physical. In this case, you have more control over the psychological aspects than the physical. However, you DO have some control over her physical health. There are times (many times) when it is "wisdom" to get a second opinion. I had been misdiagnosed for years and didn't have the "SMA" label medically confirmed till I was 29. (Earlier, I actually diagnosed myself when I was working on my master's degree in rehabilitation counseling and found the disease in one of the textbooks.) Doctors have incredible egos and don't like to be upstaged by parents. Seek the best health care for her (nutritional, respiratory and orthopedic) and above all, find out what other parents are doing for their kids! In any case, enjoy your child. Consider her a unique blessing from which to learn about REAL love. Believe me, there is no substitute. The sorrows and disappointments will balance out with the joys and triumphs, and your experiences as parents will provide you with a million opportunities to grow personally as well as spiritually. If there is anything you need from me, even if it's only a listening ear or understanding heart, you have only to ask. Blessings to you and your child ...
Mary Jane Ausse Mary Jane Ausse was the Associate Editor of Living SMArt, a bimonthly, non-profit newsletter published by and for adults with SMA. She died January 25, 2005 and is mourned by the entire SMA community.
From Sue Wilcox
Dear Parents: I have talked with a few parents of disabled kids lately, and I have found myself somewhat frustrated by what seems to be an over-concentration on dealing with the disability. I am afraid that in some cases, parents are so eager to "deal with the disability" that they forget to deal with the child first. All children need to grow up feeling secure in learning and loving and planning for tomorrow. No disability changes this. The poor prognosis of many neuromuscular diseases seems to get in the way of actually living whatever life there is to be. It is a difficult diagnosis for parents to live with because it seems to end their hope for their child's life. But this need not be so if they take some time to reflect on life and living and the purpose they see it all having. What do you tell a disabled child if he or she asks, "Am I going to die?" Well, the same thing you tell all kids. "Yes, we all are going to die someday - but not today, and not tomorrow, and probably not for a long time. What we need to do now is to concentrate on living and growing and loving and learning and to do the very best we can to become good people for as long as we do live. That is what living is about. That is your responsibility now. We will talk about life, not death." Many healthy children die suddenly of accident or illness, yet with none of them would we sit down to discuss how they might die tomorrow in a traffic accident, or how they might drown at their next swimming lesson. Why do we think disabled kids need to hear this? This is not "dealing with disability." This is changing living into dying. Please don't teach a child to live life in contemplation of death. "I won't lie to my kids," was one parent's answer to me. But wait! You lie about Santa Claus, the Tooth Fairy, the Easter Bunny, don't you? You say that is different, because those legends are part of childhood and teach children to learn to give, to grow, and understand the renewal of life. Yes! And the legend that "everything will be all right" is just as important, or more so, for kids to feel secure in their early years and ready to face the next challenges in their lives. As a child grows, he or she will naturally tackle the more practical problems of how to cope with the limitations of the disability, and at those times it will be more appropriate to discuss the nature of the disability and what it means for the future. But make sure you let them have a vision of the future. Talk to your kids--all of your kids, disabled or not--about living, planning for tomorrow, growing, responsibility, dreams and goals. It will be a nightmare for you to hear the doctor say, "He won't live beyond his teens." But you must then turn to your child and say, "What do you want to be when you grow up?," just the same. For your children are alive now and part of life is to plan for the future. Let them reach for tomorrow, just as we all do. Don't let death have them until it takes them. And never, never take away their dreams for tomorrow. You will have given them the most important part of a "normal" life if you can do this for whatever number of years you have with them. And I write this as a grown-up disabled child who was always encouraged to reach for tomorrow.
Sue Wilcox Sue Wilcox (SueWilcox@wi.rr.com), 61 years old, is married, is a retired rehabilitation counselor, and has Type III SMA.
From June Price
Dear Parents: I speak as an adult who was not given a future. Although I was not told that I would die in my childhood, that was certainly the implication. There was never a discussion about "tomorrow," or "when you grow up." The understanding was clear to me: I was not going to be here. When I reached ninth grade in an orthopedic grade school, state law mandated I could stay in that classroom until I was 23. High school was far and above my dreams. But by some fluke (or miracle), I ended up in an orthopedic high school that next year. During high school, an impressionable teacher laughed if any of us even whispered the word college. We were disabled. We were going to live at home with our parents until we die. Period. After high school, it took six years before a Vocational Rehabilitation counselor agreed to send me to college. His predecessors had been bold in their denial: "You have muscular dystrophy [a misdiagnosis]. The State refuses to invest in you as you'll never live to see graduation." I was not expected to live, to work, to succeed. I was only expected to die. I spent a lot of time waiting for that to happen but found the wait boring so (fortunately) decided to do a few things along the way. A few things that have made my life, and the lives of others, a bit better. Today, at 48, I look back and wonder how differently my life may have been had I been given the gift of hope of a future. Because regardless of what all the "experts" predicted, I'm still here. Parents and doctors didn't know any better back then, but they should now. Giving your child the hopes and dreams that goes with a future costs nothing. Not giving it can waste a lifetime.
June Price June Price was the Editor of Living SMArt, a bimonthly, non-profit newsletter published by and for adults with SMA. She died January 24, 2002 at the age of 54. June Price was one of those people who touched the lives of everyone that she met and talked to with kindness, wisdom and grace. Her ability to communicate was evident in her writings. Her compassion and courage showed through in the way she reached out not only to those adults affected by SMA but to those parents of children living with SMA. She gave hope and inspiration to us all. June we will miss you.
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