RETINOBLASTOMA
SUPPORT NEWS

Fall 2005

A MESSAGE FROM NANCY AND JAZMIN

In this issue of the newsletter, which we know is very, very late in arriving, we are pleased to feature an article entitled, "Ten Lessons We Can Learn From Our Children." This article was excerpted from one written by Roberta Isrealoff and appeared in the May, 1999 issue of "Parents Magazine." We are grateful to them for allowing us to use part of the story for this newsletter. The ten lessons she speaks about are clearly meaningful and helpful. Ms. Israeloff articulates clearly that, "children may be tough teachers, but parents rise to the occasion." We agree whole-heartedly.

We are also thankful to the mom who wrote to us about the enucleation of her daughter's eye. We know this is a difficult subject to speak about or write about, but she speaks from her heart about what she felt and how she is doing now. We know many of you will relate to what she says and we hope that you will share your stories with us as well. You are our best teachers and we are blessed to have your expressions of deeply felt thoughts and ideas shared with us.

Finally, we are pleased to recommend an irresistible book called "A Hug For You" by Margaret Anastas. We felt like we all got a giant hug after reading this little book and we hope you feel the same. This book is very simple, yet we recommend it for children of all ages.

As you can tell by now, our newsletters will not be arriving at your homes, but available on our website, www.instituteforfamilies.org. We hope you are able to access it easily as it is a way we can reach many people and save postage as well. Please feel free to print each issue and pass it along to anyone you feel can benefit from reading Retinoblastoma Support News. As always, we look forward to hearing from you and wish you a summer and fall filled with the warmth of the season and the gentle hugs and kisses of your children.


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BOOK REVIEW
~ A Hug for You ~ by Margaret Anastas

"A Hug For You" is an irresistible book that we think will make you feel as if you've been given one big giant hug! The expressive yellow duckling we follow through the story gets hugs for all sorts of things. There's the hug you get on a cold winter's day and the one that helps to comfort. There's the hug because you're getting so tall, and one for no reason at all. And there are lots more reasons for them, too, as we are sure you and your child will discover. Duckling and his friends find that the more hugs the merrier and, indeed, they seem contagious.

Books do not get much simpler than this one. The uncomplicated text and rhymes are a perfect match for the softly-hued illustrations, which are as gentle as the affection shared throughout the story. We recommend this book for children of all ages as none of us can ever get too many hugs and we hope you agree. This book is available in hardcover for $15.99 or can be found at your local library.

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FYI
Good News From Described Video Services
We are happy to share new information about described video services. This summer, thanks to WGBH's Motion Picture Access Project (MoPix), which makes films accessible to moviegoers who are visually impaired, the following releases are among those that currently are or will be playing soon at a MoPix-equipped theater in your area: Shrek 2, The Day After Tomorrow, Spider-Man 2, The Clearing, I, Robot, A Cinderella Story and Bourne Supremacy. And our DVS Home Video collection will expand to include Cold Mountain, Dr. Seuss' The Cat in the Hat, Peter Pan, Mystic River, Cheaper by the Dozen and Nova: Why the Towers Fell. We have made, however, the difficult decision to stop producing a print and Braille version of our twice-yearly DVS Guide due to the cost. Instead, we will be increasing the number of DVS E-Guides from two to four per year. You can sign up to receive these via e-mail. Send your request to [email protected], or visit our web site (access.wgbh.org), as each E-Guide is posted there. You can also call the automated phone line at 1-800-333-1203 to listen to the latest E-Guide or DVS Home Video catalogue.
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PARENTS
helping
PARENTS
The question for this issue comes from Lisa in South Carolina. She writes, "My two and one half year old daughter has a big problem with sharing her toys. She always cries, 'It's mine, it's mine!' Play dates are not fun for either of us. Could this be because she has been treated for retinoblastoma? What should I do? Thank you in advance for your help, a desperate mom.

I have been a pre-school teacher for fifteen years and I can say that your daughter's inability to share is perfectly normal. I am not too familiar with treatment for retinoblastoma, although one of our teachers has an artificial eye because she had retinoblastoma as a child. I am confident, however, that the sharing issue is one that is a difficult problem in almost every household at one time or another. From a developmental perspective, children are really not programmed to share until they have reached at least three years of age. Experts tell us that children are developmentally not equipped to fully comprehend the concept of sharing before that age. There are children who do understand sharing earlier as well as children who are not fully able to share until they are closer to four. I do not know if this makes you feel better, Lisa, but all I can say is that your daughter sounds perfectly normal to me and to the other teachers in our school who discuss issues like this at our weekly meetings. I would speak with other parents and see what answers you get in this newsletter, but I think when you compare stories with other mothers and fathers, if they are telling the truth, they too have had to deal with this issue. Best of luck to your whole family.

Sincerely, Tamara, Florida


Sharing in my household was a major problem until my son was almost four years old. He would have such terrible tantrums when other children came over that I stopped inviting other children over to play for a period of time. I used to be so embarrassed when other parents witnessed this behavior that I wanted to disappear. I do not think the reason he had issues with sharing had anything to do with his retinoblastoma, which was in remission from the time he was eighteen months old. I think he just was a very dramatic child who did not want anyone to touch his toys. He wanted to control his environment and this did not include sharing. I tried everything; reward systems, time outs, and charts with gold stars for sharing. None of these worked. After I had taken about a month off from inviting other children over, and I did explain why we were not going to invite other children over to play, I had an idea. Since this seemed to be not only a problem with sharing but a problem of his controlling what toys of his were touched, we made a deal. We would go through all of his inside and outside toys and he could designate a few toys that were not going to be shared. We agreed that I would put the non-shared toys in the garage when he had someone over, but that if he wanted to continue to have friends over to play he would have to remember that anything he did not remove was to be used by everyone who was visiting. They would take turns as I had said, but he knew that his very special toys were away from any other child. I could not believe my luck. It worked. The very first time we tried this new plan; my son became civilized. I no longer cringed when other children took one of his toys, as he was more than willing to let them have a turn. I praised him, of course, for this new behavior and told him how proud I was of him for keeping his promise and sharing. When his guests left, we would take the toys out of the garage and he would resume playing with them. I hope this works for you Lisa. I think sharing is complicated and I think when children have had medical problems probably control becomes more important and that is perhaps why they want to be in charge of each and every toy. I also know how hard it is to parent a child when they are behaving in a totally inappropriate way. Hopefully your daughter will respond positively to this new plan.

Sincerely, Natalie, New York



Dear Lisa,
My son would also not share at our house. He would run after other children and grab his toys right out of their hands as soon as they picked them up. I resolved this issue by asking the other parents to bring some of their children's toys. I simply told Nathan that he could not play with any of the other children's toys until he let them play with his. It worked like a charm.

Derby, Kentucky



When this came up at our house, I tried a strategy that might seem crazy but it worked. Just like our dog not liking other dogs visiting our house, but was fine in the park, I decided that our daughter did not want to play with and share toys at our house. So, instead I scheduled play dates at the park. Each child would bring toys and they would share with no problem. It was like the territory changed everything. I am not saying that children are like dogs, but watching my dog did help me to look at this problem from a new perspective. Hopefully some variation of this will work for you.

Maria, Oregon

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Dear Friends

This is a letter I read in another publication that I wanted to pass along because I feel that it expresses what we as parents experience and what we hope for our children.

"The journey of mothering and fathering is the same for most of us. As our baby's arrival approaches, we promise ourselves that we will move heaven and earth to be the best mother/father we can be. We swell with love and pride during the good times, and during the bad times, we feel our child's pain. We find out what mind-numbing fatigue feels like and what the end of our rope looks like. If we haven't already figured out how to stand up for ourselves or for the right thing, we learn when we become mothers or fathers, because if we don't stand up for our child, few others will. We learn to think difficult issues through - frequently at 3 AM - and know by heart the chapter in the medical reference book about earaches. It is a never-ending lesson in how to be nearby when we need to be and not when we shouldn't be. I wonder if many of us would have been scared away had we seen the never-ending to-do list of everything that mothering involves.

Thinking of all that mothers/fathers do, how we are changed and how we affect change in the world, I am reminded of a story a friend told me about an African American woman whose son was killed. When his killer was acquitted by the white jury, she walked outside the courtroom and said to reporters, 'I haven't got a second for hate. I'm going to work for justice the rest of my life.' Here was a mother who had gone through all the stages of mothering I've talked about, but didn't leave it there. In the face of a mother's greatest pain, losing a child, she took mothering a step further by refusing to bring more hatred into the world.

Right now, when the world would benefit from a bit more kindness - and what mother doesn't want a gentler world for her child? - let us add one more thing to our mothering/fathering to-do lists: to teach our children that there is simply not a second to waste on hate. I can't think of a more meaningful undertaking."

This letter was written by Ann in California. It seemed a wonderful statement about parenting and one we can all relate to. I am thankful to Ann for writing what I have felt on so many occasions and want to wish all of the mothers and fathers out there a special day with their children.

Beth, Arizona
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Heart to Heart
It has been a long time since I last read a newsletter, but I just took out my stash of past issues and finally decided that I would write and share how my husband and I felt when we learned that our precious daughter had to have one of her eyes removed.

After numerous visits to the pediatrician and finally an ophthalmologist, we were referred to a center that specialized in retinoblastoma. We did not realize at the time that retinoblastoma meant cancer. I guess we were in too much shock to make the connection. We thought that the doctor would just take out the tumor and our baby would go on as usual. Well, I am sure all of you know all too well that is not the case. We met with an ocular oncologist who carefully examined our daughter, told us we would need to have an MRI and also an examination under anesthesia. We were scared, but it never occurred to us that our baby would lose an eye!

After all of the tests had been done, we had a meeting with the doctor and he carefully explained that no matter what treatment plan we tried, our baby would never have vision in her right eye. We learned that the tumor had destroyed her retina and that no amount of chemotherapy or radiation would ever be able to repair the part of her eye that would let her see out of that eye. We were devastated. It was on that horrible day that we also finally made the connection that our precious child had cancer and that the cancer she had could kill her if we did not treat it. My God, what a horrible realization that was. Just thinking about it brings tears to my eyes even now and our little "baby" is now six years old and about to begin first grade this fall!

Fortunately we were at a center where they had nurses who explained the procedure to us, showed us a booklet called "My Fake Eye" and even gave us the name of another family with a child who had a prosthesis. We never did call this family until after the surgery as I guess we were too afraid, but we did finally meet and had the pleasure of seeing a beautiful nine- year -old boy who lives life to the fullest. At the time he told us that he played soccer and was on the swim team. How amazed we were. He wears sports goggles to protect his other eye, but he is a normal boy and now we always offer to have newly diagnosed parents meet our daughter as she is doing so well.

I thought I would never survive the day of surgery, but here I am writing a letter for this newsletter about the worst and best day of my life. It was the worst because our daughter lost her eye; it was the best because she no longer has cancer. She is in a ballet class, loves music and plays tee ball and is just another little girl. She talks about her prosthesis with other children, but does not feel upset or uncomfortable if someone asks her a question. We will always be grateful to the professionals who gave us what we needed when we needed it and want to give back in any way we can. We want those of you out there who are facing this surgery to know that although you will never forget, there is a future filled with exciting adventures with your child. We love our daughter and are so proud of her achievements. Love and blessings to you all,

name withheld by request
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TEN LESSONS WE CAN LEARN
FROM OUR CHILDREN

Each stage of a child's development offers new potential for parents to grow, learn and discover our inner selves. Before our children are even born, we may envision ourselves as much teachers as parents, imparting new wisdom and all of life's sweet pleasures. What most of us do not imagine is how much we will learn from our children. Most parents will agree that they have learned much more than they have taught.

"Having children is definitely a form of continuing education," affirms Wade Horn, Ph.D. and president of the National Fatherhood Initiative in Maryland. "It's not that children are wiser than we are. But they give us the opportunity to see ourselves in an entirely new light. With our kids as our teachers, we learn about ourselves, our relationships, and the world at large."

Lesson number one. Love is infinite. "This may sound trite, but I had no idea how much love I could feel until I held my first child," says a mom from Alberta, Canada. "Three years later, my second son was born six weeks premature. He was hooked up to tubes for the first two weeks of his life, but he was a fighter and he made it. I was completely crazy about him. A year later, during my last pregnancy, I was afraid that I couldn't possibly love a new baby as much as I loved my first two, but my daughter proved me wrong."

Thanks to our children, we learn that love has no limits. Somehow each new arrival creates his or her own place in our hearts, and we find that we have more than enough love to go around.

Lesson number two. We have less control than we think. "When I began childbirth classes, I was smug as only a first-time expectant mother can be," says a mom from California. "I was positive I'd have a natural delivery without drugs. After all, I was in good shape. Besides, my husband and I had read all of the books and had practiced all the breathing exercises - what could possibly go wrong? Well, first we found out that my daughter was breech. Eighteen painful and exhausting hours later, I had to have a C-section. So much for a fast and easy labor!"

Children quickly teach us to expect the unexpected, especially when it comes to issues of control. Many of us who thought we were in the driver's seat, inevitably start to wonder if the car isn't driving itself! The sooner we learn to stay flexible and allow ourselves to let go of all of the "shoulds," the better off we will be.

Lesson number three. Everyone has a darker side. "As a preschool teacher, I had
worked with children of all different temperaments," says a teacher from Michigan. "I felt more than ready to raise my own child. But when my daughter was three weeks old, she went through a period of serious colic, and I could not comfort her. Every time I picked her up, she would start to cry even louder.

"I remember pacing around the kitchen, feeling not only like a complete failure as a mother, but so full of anger that it scared me. For the first time, I understood how some mothers end up shaking their babies. My love for my daughter was all mixed up with resentment and disappointment. I had never had such intense feelings about anyone else, not even my husband."

Children can bring us face-to-face with the depth and breadth of our emotions, including negative ones like fury and frustration. Fortunately, at the same time, we learn that it is possible to experience a feeling without acting on it.

Lesson number four. We can change if we really want to. "For years, my mother and husband told me that at times, I could be insensitive to other people's feelings, especially during arguments," says a mom from New York. "I would go on the attack and say reckless things just to prove my point." But during a fight with her oldest son, who was then about six, the boy began crying and said, "Stop it, mommy, you are hurting my feelings."

He stopped me cold. The message wasn't new, but it was as if she was hearing it for the first time. "I couldn't react defensively to my own child or dismiss what he said. I was supposed to protect him, not harm him. I told him how sorry I was and that I would try not to hurt him that way ever again."

As this parent discovered many times, often the problem rests in ourselves, not our children. Taking responsibility for our own feelings and actions is part of what defines us as adults.

Lesson number five. Kids are individuals, not clones. "I dislike confrontations, but my son has thrived on them since he was little," says Bonnie from California. "He would argue about anything and everything - trying new foods, how I drove the car. At bathtime, he would argue about getting into the bath - and getting out." This parent says that for a long time, she thought her son would outgrow this behavior, but over time, she has come to realize that it is part of his personality. "It has taken me a long time to value his determination. He's not afraid to stand up for what he believes. I feel as if he is teaching me how to overcome my own fears of speaking my mind.

Accepting her child's differences has helped this parent become more tolerant and respectful of her own friends' individuality as well.

Lesson number six. Nobody expects us to be perfect. "Sometimes, after a long day, I find myself snapping at my four-year-old, for doing what kids that age do - whining when she doesn't get something she wants or being cranky before dinner. Yet even when I lose my temper with her, she gives me a hug and kiss at night and says 'I love you.'" Her child's ability to easily forgive helps this parent forgive herself.

"I used to kick myself for yelling at my daughter, but now I don't take every mistake to heart. I just vow that I'll try to do better next time, and move on."

Lesson number seven. We shouldn't be too quick to judge others. During my first pregnancy, I made a lot of promises to myself about the kind of mother I would be: I would never use the television as a baby-sitter, feed my kids junk food, or bribe them for good behavior. Needless to say, for my son's first birthday, I had eaten every word.

If my own children have taught me anything, it is to be less judgmental and to refrain from holding others to a standard I cannot meet myself. By the same token, I have become much more forgiving of my own mom and dad. It used to drive me crazy to hear them say things like "Be careful," whenever I walked out the door. Now I hear myself calling after my children in the same anxious voice my parents used. It's clear to me that they did it out of love. Seeing things from their perspective has helped me let go of old grudges and complaints.

Lesson number eight. Live in the moment. "Trying to accomplish my morning errands with a toddler in tow is like running a race with my shoelaces tied together," says a parent in Florida, mother of two children. "I don't get as far as I think I will, and I won't get anywhere at all if I rush." When it comes to teaching the value of slowing down, toddlers are Zen masters. "Before my children were born, I was very compulsive about getting places on time and getting things done. I was always concerned with what would happen next. When I became a mom, just learning to walk at my children's pace took an enormous effort. Now when I take a stroll, even by myself, I notice colors and shapes and sounds they way my two-year-old would. I'm experiencing the world on her level and I love it."

Part of learning to live in the present involves relinquishing our nostalgia for the past. One parent recalls how frustrated she would get by the fact that her sons like to spend their free time playing on the computer. "I would tell them, 'When I was your age, I would read three books a week.' " Their answer, 'that is because you didn't have computers. We get our information on-line.' " This parent had to admit that her children were very well informed, and she decided she would rather learn about computers herself than preach about the good old days.

Lesson number nine. We are all in this together. "Before I had children, I was incredibly myopic - I worried mostly about my life and how to make it better. When my kids were born, I began to realize that no child should be suffering or hungry or homeless or poorly educated. I realized that to take care of my own girls, I had to think more globally. It's not enough to care about the kids sleeping down the hall from you. Someday a child you don't even know will be your child's neighbor, colleague, or spouse. We have to make the world a better place for everybody." As a result of her heightened consciousness, this parent became very active in her daughter's public school and in other social causes. "My children permanently changed the way I see the world. They enlarged my concept of family."

Lesson number ten. We are never done learning. "I used to think that all you had to do as a parent was love your children. But parenting is so much more complicated than that. You have to be willing to assume an incredible level of responsibility, to be endlessly patient, to switch your tactics on a dime. I was surprised at the profound developmental changes my child went through in a short period of time. Just when I got used to infancy and began to trust my instincts, my daughter turned two and became a very different person. I felt like a novice again. I expect I am going to be learning more at every new stage. Being a parent is the hardest thing I have ever done in my life. But the pleasure is beyond anything I could describe.
Children may be tough teachers, but parents rise to the occasion. As Dr. Horn says, "One of the most enduring and surprising lessons children teach parents is that we are better people than we even know. Kids inspire and motivate us to be more fully human than we might otherwise have been."

Our thanks to Roberta Israeloff and Parents Magazine, May, 1999 for giving us permission to excerpt this article.

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QUESTION FOR THE NEXT ISSUE
The question for the next issue comes from Tracie in New Jersey. She writes: "My daughter is so clingy that I don't know what I am going to do. I know since she had surgery for her retinoblastoma followed by chemotherapy, she was much more attached to me. Now that all of her treatment is over, however, her behavior is much worse. She is ten months old and needs constant attention. If I leave the room to do something, she looks for me frantically and gets upset, even if her dad is right there. How can I help her with her separation anxiety?"
Dianne, Texas

Address your responses to:

Retinoblastoma Support News
The Institute for Families
4650 Sunset Blvd.
Mail Stop #111
Los Angeles, CA 90027
(323) 669-4649 ph / (323) 665-7869 fx

www.institute for families.org

P.S. Please include your telephone number when you write so that we may call you.
We welcome your letters,
telephone calls, and cassette tapes!

Retinoblastoma Support News, 2005
Please do not reprint without permission.
Reproducing for wider distribution is encouraged.

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Retinoblastoma Support News Fall 2005