A Message from Nancy Regarding the Celebration of the Holidays

Dear Friends of Both
Retinoblastoma Support News and Parent to Parent

I know that you have not seen a newsletter from the Institute for Families in a very long time. I do apologize. I am going, however, to depart from our usual format to offer suggestions, and the wisdom of others, as we approach the coming holiday season. Whether your child has retinoblastoma, a visual impairment, or has multiple handicaps, the season that begins with Halloween and ends on January 2nd is fraught with a myriad of feelings and thoughts that seem to change from one minute to the next. Most of us get caught up in a flurry of activities with our children and friends that may serve as distractions, but also as stressors.

This time of year can bring out our deepest and most confusing emotions. One minute we are happy and excited about our child's inclusion in a friend's Halloween party for example, and the next we may be overcome with sadness remembering the holidays before visual impairment and other disabilities or illness became a permanent part of our daily lives.

Before I begin to address all of the feelings associated with this impending holiday season, I would like to reiterate a message that I sent out last year that you and your children taught us regarding Halloween.

"Over the years, children have taught me many important lessons. Halloween can be a very exciting holiday for many children; it can also be a time of fear for others. For children who have had any problems with their vision, have had surgery, or have multiple problems, there are some important things I have learned that can make this a more enjoyable experience for everyone.

First, I have found that decorating pumpkins, rather than carving them, is a sensitive way of celebrating this age-old custom. The act of cutting into a pumpkin to carve out the face can affect some children negatively. Many children think of the carving of the face as rather brutal. Those who have had multiple surgeries or medical interventions find the subsequent scooping out of the contents of the pumpkin uncomfortable. Instead, decorating your pumpkin, or perhaps giving each child his very own pumpkin to decorate, can be fun for everyone and inspire creativity. Here are some suggestions I have received regarding decorating pumpkins:

With a felt tip marker, draw a face (parents can help with this). Fill in the area with colored paint or sprinkles that are glued on. Let your child choose the color. It does not have to be black. Poster paint works best because it won't wash off outdoors if you choose to paint the face.

Hair can be made of straw, string, yarn or any material you and your children find. Craft stores are full of interesting textures to use for the hair.

The face and expressions can be made of candy, for example, thin licorice can be glued into a smile for the mouth. Candy corn can be used for teeth. The nose can be a giant gumdrop. Eyebrows can be of some other interesting textured material. Have fun and let the creativity flow. Invite friends over for a decorating Halloween Party and let each child take home their pumpkin or bring their own.

With regard to costumes, I have found that face paint rather than a mask works well for children who have had visual problems. Face paint is something most children are exposed to from a very early age. Let them decorate their face to match their costume or just let them have fun with the paint no matter the outcome. Don't worry if it does not look the way you might expect. The fact that you appreciate their effort is all that most little ones need. For most children, the act of decorating their own face is all the fun. You can offer your help if they ask.

Costumes should be comfortable and not confining. For children who have ever been in a hospital, restrictive clothing can be anxiety provoking. Sleeves should be normal length so the children have easy access to their hands and fingers. Costumes can be made of anything that your child thinks is fun. Sometimes just dressing up in mommy or daddy's clothes is great fun for children. If they choose to be a super-hero, capes can be easily made with a large square of material that has Velcro on each end at the top and attached round the neck area. Children can help with the design of their costume."

Halloween is the beginning of a season of multiple holidays each with challenges. I would like to share with you a few of my favorite words of wisdom about this time of year filled with feelings from the heart. You are always in my mind and in my prayers and I hope some of these words will resonate with you and your family in the coming months.

Recently I came across this quote from Erma Bombeck. It brought tears to my eyes because it rings so true. She writes: "I see children as kites. You spend a lifetime trying to get them off the ground. You run with them until you are both breathless - they crash - they hit the roof-top - you patch and comfort, adjust and teach. You watch them lifted by the wind and assure them that someday, they'll fly. Finally they are airborne; they need more string and you keep letting it out. But with each twist of the ball of twine, there is sadness that goes with the joy. The kite becomes more distant, and you know it won't be long before that beautiful creature will snap the lifeline that binds you together and will soar as it is meant to soar; free. Only then do you know that you did your job." Although for parents of visually handicapped, physically handicapped or a child with an illness, the path the kite takes is often very different. However, the same principle applies; we must let go if we are to help our children achieve their potential. These feelings are particularly poignant at holiday times for most of us. The Hallmark version of the holidays exists only on the television channel or in commercials or novels. Real life throws us curve balls that we never could have expected. As one mom we know said, "one day we were just another regular family, and the next we were Oprah material."

For years Barbara Gill raised her son who has Down Syndrome, She wished for a book to help her in times of difficulty and doubt, a book that would confirm her instincts and reassure her that she could do the job. In "Changed By A Child", Ms. Gill shares her journey with all parents of a child with any type of disability or illness. In simple stories of faith, courage, fear and forgiveness, the author describes what parents feel and addresses with clarity the range of issues they encounter. Ms. Gill offers parents the salve of true understanding. In words that are realistic and buoyant, "Changed By A Child" invites parents to take a moment for themselves and find in its pages recognition of their reality, affirmation of their dreams and praise for their efforts. At this time of year, Ms. Gill has granted us permission to reprint a portion of her book. I hope you will find it as inspirational as I did. Even though her son was not visually impaired or ill, the journey she travels is universal.

"No matter how it comes to be that we have a child with a disability or illness, for most of us the beginning is a traumatic and wrenching experience. Our insides are torn by such shock, grief, fear, and sense of loss that it feels like death. Our very identity comes under assault as on every side our assumptions and expectations are turned on their heads. At all the points where we touch the outside world - relating to our family and friends, interacting with medical and social service systems, going out in public - we are stretched and challenged. The whole shape of our lives and ourselves is being pulled into a new form.

We don't think we can survive these cataclysmic emotions or take on the tasks now required of us, but we do. We have a child to care for, an activity that absorbs us fully and focuses our attention on life and on going forward. Affirmation, love and hope trickle through to our shattered soul. Thrown back on our inner resources, we find we do have the strength to meet the demands of each day, and in this way, step by step, we get to the other side of our grief in the only way possible: by going through it.

Always the most tangible and central thing is our child herself. We come to accept her on her terms and open ourselves to whatever discoveries and surprises she may lead us to. We may be startled at the ferociousness of our feelings for her. No matter what ideas we held about disability or illness before she arrived, she has changed them.

Our lives are not destroyed, only bent in a new direction, not over, but dramatically reshaped. . . . .

I know that other parents of children with disabilities or illnesses are traveling their own journeys, and are regularly knocked off track by many things - a health crisis, a thoughtless comment by a teacher, resistance on the part of a bureaucrat, disapproval from a family member. I've written this book to help people with the "coming back" part of the journey, to offer parents a source of support and that does not represent another demand, a place to find reassurance that doesn't expend energy but increases it. I wanted to share what it took me so may circles to learn on my own; to put into words what we experience both in our homes and out in the world; and to set down for easy reference the reminders that help us to find and sustain the confidence, strength, and hope to do our job."

No other time of year challenges families of a child with a disability or illness more than the holidays. Family gatherings, shopping with our children in crowded malls, dinners where we often feel judged by our children's behavior and our own baggage from our own childhood memories invade our minds and our bodies with deep and conflicting feelings.

A mom I have known for a long time shared her story with me. I believe many of us can relate to her holiday feelings.

Beth told me that she married her college sweetheart. Beth says, "At age nineteen when I took my vows, I had no idea that I had perfectionistic tendencies, but at 19 few of us know who we are anyway. My perfectionism started slowly. Of course, I always kept the house clean, took cooking classes so I could make interesting meals and worked full time. My husband always complimented me on how well I did everything.

When our beautiful daughter was diagnosed with bilateral retinoblastoma, (youngest of the three), life soon became more complicated than we could have ever imagined. To make a long story short, by the time our baby finished her treatment (she has amazing vision in one eye), I found that I was 'burning the candle at both ends.' I was still working half time, going to all of the doctor's appointments, taking the other children to soccer, baseball, ballet, you name it. But I did it all and everyone always told me how 'effortlessly' I accomplished everything. Little did they know that I was paying an enormous price that would soon come crashing down on me. It seemed to me that my 'supermom' needs remained under control until about a week before Halloween when our older son was seven. It was then that I felt our family boarded a bobsled that careened around corners faster and faster until it was out of control. The ride ended on Christmas night when everyone was tired and a bit dazed.

As I began sewing the children's Halloween costumes by hand, as I had always done, I began to feel this knot in my stomach. I found myself unable to sleep at night as I wrote mental notes about Thanksgiving recipes and Christmas gifts I wanted to order from catalogs. Of course, there was the nagging discomfort of how I would make our traditional gingerbread house and design our Christmas card.

About three weeks before Thanksgiving, I had worked myself up to the point that I was in overdrive and was making everyone around me a little crazy. It was then that my husband suggested that I talk with someone. I knew he was right. I called the Institute and explained the problem and they referred me to a counselor in my area. That was the best present I have ever gotten.

Although I was very nervous at first to talk to a counselor about this seemingly 'stupid' problem, I realized something had to be done to slow me down and change my expectations of myself. The counselor was wonderful. As we talked, I began to realize that there were many issues I was reacting to. As a child we had 'okay' holidays, but not like the ones you see on television. I had always dreamed of someday creating those T.V. special days for my own children, but was unaware that I was driving myself toward that goal subconsciously. Besides, those T.V. shows were fantasies and I never quite thought about the realities of life.

I learned after about a month with the counselor that my baby's diagnosis only contributed to my need to be 'supermom.' In a way, I kept myself so busy that I never had to think about the sadness I felt over the baby's cancer. I had a pattern of keeping busy and trying to do everything (perfectly, I might add) so that I could feel in control of my life and my feelings.

With a lot of work and support from my family, I slowly began to give up activities that I did not enjoy and to focus on those I did. I also asked for help. The list of important things was actually quite small. I did a lot of crying during this period as I gave up many of my activities, but I felt calmer as I also let go of the 'supermom' image I had built for myself. I found to my delight that my real self is fine and that my family feels happier than ever with the real me."

Another mom and dad sent us their story about how they learned to "chill out." They wrote their story to me and I will try to summarize what they said with the hope that we can all benefit from the lesson.

Bob wrote, "Why is it that as soon as "Jingle Bells" starts playing on the radio, otherwise-sane people are driven to extremes to create the perfect holiday? We have a neighbor who decorates her tree with homemade gingerbread ornaments. She was making these amazing ornaments when she knocked the molasses jar on the floor. It went downhill from there. Her cat, long- haired, of course, sat in the molasses pool. And when she yelled, the cat ran down the hall into the bedroom spewing molasses everywhere. She washed the floor, the quilt, the carpet and the cat and went right back to the kitchen to finish baking. She said it did not make for a happy time, but she said she had to play it out."

What we all need to learn says Bob is to just relax. We should try potluck for a holiday dinner. We should let the kids do the decorating and not worry if it is beautiful by our standards."

Experts tell us we're trying to re-create our childhood holidays with Herculean efforts. If they weren't perfect, and whose were, we're trying to make up for it, to compensate. If we've endured a loss, we're trying to make up for that as well.

Several years ago, another mother I know, Kathy, told me, "we just stopped everything that wasn't fun. That included baking cookies, finding the perfect gifts and not wrapping every gift with a special touch."

Doug says, "people have to give themselves permission to make the holiday what they want and not what they think is expected. The less stress during the holidays, the happier everyone is, especially the children."

I want to thank you all for each and every story you have shared and every suggestion you have made. I realize that we all will continue family traditions because it not only makes us feel good, but it normalizes a time that often does not feel "normal." However, normal can mean many different things. Although we may not all be Martha Stewart, we all have our gifts and each of you is a special gift in our heart here at the Institute for Families.
I wish you and your family the happy smiles of your children and all of the people who love you and of those you love. I send you my best wishes for a peaceful, and joyous holiday season no matter how you choose to celebrate. You are always our best teachers and as always I feel honored to be counted among your friends. I look forward to more letters and more shared feelings as all of us at the Institute feel part of a very large extended family that extends around the world. Love to you all and let next year be filled with good health and good times for you and your children.

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