A Mother Recovers From Her Depression

I was breastfeeding Inga and trying to nurture her in every way I could at the time. And yet every waking moment seemed filled with the questions "Why?" "Why her?" "Why me?" There were no answers. Inga was 8 weeks old when Eric completed his tour and we returned to the US. It felt so wonderful to be with family again, and yet I felt so alone. We chased from doctor to doctor for 6 months, finally going to the University of Michigan. Surgery was never recommended at the time because Inga’s nevus was so large. We continue to make annual checkups. I am happy to say Inga is 18 years old now and remains stable. She does wear T-shirt type tops, which reveal her nevus at the neck and upper arms. Inga has weathered 3 biopsies and each one has been negative, thank God above.

As the years passed, I came to feel that Inga had a mission when she came to me as my daughter. She has taught me so much about life. I used to be so caught up in material possessions and outside beauty. Now I know the essence of a person is what is beautiful--the spirit and life from within--not the exterior. I would not trade Inga for any other daughter in the world. She has a strength and joy that resounds so deep within her soul and I am happy and proud to be her mother. To what do I owe my transformation? How did I overcome my depression? Through time and by faith and hope, I believe. Initially I wanted my little girl to be like every other little girl, blemish-free with pure white skin. I now know that the lessons and the pain that we have borne as a result of the nevus have actually been a blessing for me and for my family. That’s not to say that I wouldn’t take the nevus away if I could, because you’re darn tootin’ right I would!

Inga did well in elementary school. I thought dealing with her nevus was a breeze then. In middle school, things changed quickly for the worse. Her peers were ruthless, constantly tormenting her, and her grades suffered. Now that she is in high school, her social situation is better. But when homecoming came up her freshman year and she so desperately wanted to go and no date was forthcoming, once again her pain became my pain. My heart weighed heavy as I felt her desperate need just once to be like all the other kids. That feeling surfaces and resurfaces. And in her sophomore year, Inga did find a boyfriend!

When Inga was 14, we finally met others with a giant nevus for the first time through the Nevus Network. Prior to that, I had been fairly ignorant regarding the medical repercussions of this condition, such as brain melanoma and neurocutaneous melanosis. Ignorance is bliss, as they say. Now that I know more of the facts, it has been sobering. As Inga’s nevus is too large, we were never offered any surgical treatment. I have to believe that we have done the best we could in not having any surgery. If someday Inga chooses a procedure, then it will be by her choice. Now it is no longer in my hands. But then, it never really was....--Sue E., Brighton, MI.

Molly Sends a Rainbow!

Editors’ Note: Doug and Kelly’s daughter Molly, our "poster child" who had a bathing trunk nevus, died of neurocutaneous melanosis last summer. Kelly and Doug are always happy to talk to others about their daughter. They also have a younger son named Ryan

For three years, Molly Kate P. was a beautiful, smart, and sweet little girl. She was everything I could have asked for in a daughter. We had fun together. Molly was very much loved and accepted by all. Doug and I thought we were dealing well with her giant nevus condition. Molly had seven skin excision surgeries under her belt and she looked wonderful. After the seventh surgery, we figured that we had done all we could and would put her through no further discomfort. We figured Molly was finished with hospitals, gauze, stitches, and doctors when she was diagnosed with hydrocephalus caused by neurocutaneous melanosis (NCM or nevus cells on the brain and spinal cord). Needless to say, we were petrified, more by what we didn’t know than by what we did know. Even though we were told that NCM is usually fatal, we still had hope.

Month by month, our hope diminished as subtle changes in memory and behavior occurred. Molly became forgetful. In May, 1996, she had an MRI and it confirmed that the tumor was growing. Molly was placed on pain medications for back pain caused by tumors in her spine, which made her very sleepy. On June 12, 1996, Molly had a severe seizure/stroke. The doctors were never sure which it was. She was unresponsive from then on, and we found ourselves deciding whether or not to place a feeding tube in her stomach. We did and she was discharged home with it. Hospice helped a great deal in her care. We prayed that God would call her home soon.

Seeing our lovely daughter in a constant semi-coma was nearly unbearable. The one comfort to us was that she appeared to be in no pain. We knew we would rather let her die than exist in that condition. We sometimes wished we hadn’t put her through all the surgeries. We gave her permission to go whenever she felt the time was right. We held her and talked to her about Heaven and how much fun she would have there. She would once again be able to do all the things she loved to do before. On August 3, 1996, with Doug and me by her side, she went to be with her heavenly Father. We were cheering her on the whole time, telling her to fly up to Heaven. Since then, God has given us many signs to let us know that He has my girl with Him. I jokingly say God gave us a wonderful girl for a short time and then she was so good He decided to keep her for Himself!

The day of Molly’s funeral was very hot--over 90 degrees. By evening it started pouring rain. After the heavy rains subsided a tiny circle of clear sky formed, sunlight streamed down, and a beautiful rainbow appeared. Doug said he knew it was a sign from Molly. I mentioned Molly’s rainbow to my pastor and he handed me a picture he had taken of it from his van! It’s a perfect picture. The next day, by chance we turned on the radio and what should we hear but "Good Golly, Miss Molly" playing loud and clear. I know that Molly’s spirit lives on and that we will see her again. Someone told me recently that love transcends all time and space. And so many things have happened since Molly died that some may call coincidences. I don’t believe in coincidences anymore. I believe, as I once heard, that a coincidence is just God’s way of remaining anonymous. God has wrapped us with His comfort blanket, but we still miss Molly. All we want is for her to be happy, and if it can’t be here on earth, I know it’s in Heaven! --Kelly P., Lansing, MI

Coping Improves When "Why Me?" Becomes "Why NOT Me?"

Perhaps, as Kelly writes, coincidences are just God’s way of remaining anonymous. And perhaps randomness is a part of our world. And perhaps both are true. For 26 years of my life, like all of you, I asked myself the question, "Why me?" Why was I born with a bathing trunk nevus and not either of my two brothers? Why was I spotted and speckled with more than 500 satellites and they both had flawless milky white skin? Why did that long, coarse hair sprout from those slightly protuberant moles? As a little girl, I thought that sprouting hair and the protuberance looked especially repulsive, and it took me years to accept it. I never heard of anyone else who looked like me. Why was I all alone in the world with this condition? I knew in my heart neither I nor my ancestors, in spite of what some people would tell me, had ever done anything to deserve this. "OH GOD, WHY ME?"

No one had an answer. My mother tried. "Everyone has something wrong with them," she said. "What does my older brother Steve have?" I asked. "He wheezes," she replied. And what does my younger brother Bart have?" I asked again. She hesitated and I could tell I had her stumped. Not everyone has something physically wrong with them at birth. Years later, I realized my mom was half right. Later, if not sooner, everyone does have something wrong with them because everyone gets sick and dies and no one lives forever. Some time after, my younger brother developed mild amblyopia, and my mother finally answered my question, "He has a lazy eye." As a little girl, I was fascinated by what other people had wrong with them. But even I could see that most people, including my brothers, had minor problems compared to me. Obviously, life was not fair.

When one of my classmates, Kim S., jerked up my skirt in kindergarten in front of all the other kids to stare at my thrice-dermabraded, scar-and-nevus-covered thighs, I started to cry and asked myself, "Why me?" (It is completely impossible to hide extensive scarring or a giant nevus from classmates over time. Looking back, my mother could have initiated an educational Show-n-Tell about my skin with the teacher and the class to avoid this situation.) When another, Debbie H., pushed open the locker room shower door on purpose and ambushed me naked in the shower after ninth grade gym class with only a towel to hide behind, I again cried to myself in the middle of the night, "Why me?" (My doctor could have given me a medical excuse for gym to avoid this situation. Both my parents fortunately did emphasize getting exercise and maintaining physical fitness outside of gym class. Because I was strong, I was not picked on very much.) When I was necking with a boy in college who didn’t know about my skin and he happened to glimpse a bit and threw me out of his room, I screamed and cried for several days, "Great Spirit, why did you do this to me?" (I later learned through experience to tactfully tell the opposite sex about my skin in a casual situation such as dinner relatively early in a relationship. Then I could decide later on if the relationship had any potential and whether or not to show any of my skin to them. This way I would avoid the emotional trauma of that initial shocked rejection--for them and for me.) In all of these situations, there was that unspoken question, "Why me?" Why do I have to deal with all this? It’s a legitimate question, and no one had an answer that made any sense to me.

In the summer of 1982, I was 26 years old, renting 2 rooms on a family’s third floor, working, and going to school. I came home one day for lunch. Just by coincidence, I turned on the TV. Now I almost never watch television. When I was little, our TV broke, and my parents didn’t get it fixed for years in spite of their children’s pestering. So I never developed the habit of relaxing with television. Looking back, I am so glad I grew up TV-free because I was not constantly bombarded by the media’s images of made-up, airbrushed, computer-enhanced beauty, which no one, including the models, can ever really achieve. (Have you ever seen a candid photo of supermodel Claudia Schiffer--she looks quite ordinary!) But that day by chance, I turned on my small black and white television. And I was entranced. A rabbi Harold S. Kushner was visiting Cleveland where I was living and talking about his life. He said, "I watched my 14-year-old son suffer and die an old man of progeria, or premature aging, and I kept asking myself, ‘Why me?’ I’ve pondered that question, and I no longer think that is the correct question to ask. Instead I think the right question to ask is ‘WHY NOT ME?’" This could have happened to anyone. Why not me? Sometimes things happen by chance. God cannot control things that must follow natural laws. It could have been you. But it was me. Why not me? Randomness is a part of the world. Why not me? Now that this has happened to me, what can I do about it? How can I best cope with it? To me, it was the first time anyone trying to answer that question made any sense.

Dr. Kushner was discussing his new book, "When Bad Things Happen to Good People." BAD things can happen to GOOD people. It was a novel concept, something I had always felt even as a little girl but had never been able to articulate. Lunch forgotten, I couldn’t take my eyes off the television. When it was over, I quickly jumped on my bike (I wasn’t able to afford a car then) and raced 3 miles to the nearest book store. By chance, they had just received a shipment of Kushner’s books that very day. I bought one and biked back home to read it. Fortunately, I had that particular afternoon free to read. By twilight, I had finished the book and Dr. Kushner had changed my life forever. After 26 years, I stopped asking myself, "Why me?" My nevus could have happened to anyone. Why not me? And now that I have it, I need to find help in dealing with it.

When I saw someone else with a serious problem before I read Kushner, I used to think, "That poor thing, I hope that won’t happen to me because I ‘ve already had my quota of bad luck." But now I tell myself, "I feel really sorry for that person and I am so glad that it hasn’t happened to me. I will do what I can to prevent it from happening to me, but it could happen to me and if it did, I would deal with it at the time." After all, why NOT me?--BJ, Lake Ridge, VA