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The Conformer

ican's Family Newsletter

Fall 1995

The ican executive Committee has been working diligently to further the development of ican and, as a result, expand its reach and impact across the united States, Canada and abroad. Many exciting accomplishments have been made and projects initiated. I would like to take this opportunity to provide an update on theses activities.

It is a privilege to continue to work towards the goals of so many families of children with anophthalmia/microphthalmia and professionals who work with them: to connect with and support each other and to learn together about the many issues and queries that surround these conditions. I never cease to be amazed at the strength and compassion of the many parents who contact ican every month. While you contact us for information and support, we often learn more from you than you could ever imagine and, without exception, your stregnth and love motivates and supports us and our efforts with ican.

Perhaps the greatest example of such miraculous strength and love is Anita Wallace, the mother of four exceptional sons, the youngest with bilateral anophthalmia and one of the founding parents of ican. Anita, together with her husband Jim demonstrate the power of love and committment and serve as a role model to us all. It is with tremendous grief and sadness that I share Anita's recent death with you. ican dedicates this issue of "The Conformer" to Anita and her family. We wish to extend our sincere thanks for having the opportunity to know, love and learn from Anita and for her tireless efforts to reach out and touch those families who sought her support.

To that end, this issue of "The Conformer" includes information about families coping with the experience of having a child born with anophthalmia/microphthalmia. As Anita was quoted in a 1994 television special about anophthalmia/microphthalmia,"We don't want people to see us and feel sad....We're okay...our kids are okay...because they have us as parents..."

Sandy Gomberg

Funding for the newsletter provided by
The Albert Einstein Society
Albert Einstein Healthcare Network


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The Conformer


Coping-A Challenge And A Commitment by Mary Eno, PhD

When Sandy Gomberg requested that I write an article for this newsletter, I was not sure that I would have much to offer by way of advice or reflections on how parents can best adjust to the complicated, sometimes overwhelming demands of bearing and caring for a child with anophthalmia. After agreeing to the assignment, I found myself thinking of the demanding often confusing roles of parenting children with no special needs, and wondering whether one can simply extraoplate to parenting children with special needs. Certainly, parenting contains certain universal demands on caregivers. However, parents reading this nesletter must feel that while similarities exist, significant differences set them apart from all other parents whose children do not have anophthalmia.

The moment for which one embarks on a new life course is the moment one hears the news of one's baby's condition. This marks the beginning of a new, initially forbidding journey, a journey that each parent must make alone and together.

The first challenge for parents is to grieve the loss of the baby they did not have. In anticipation of the birth of a baby, every parent holds a dream for who this as yet unborn child is. With the news comes a profound shift which one parent described as a "tantrum feeling in your soul." Somehow, with tears and acknowledgement of the pain and loss each parent must let that healthy baby go and receive the very real baby they were given. It is easy in the face of this challenge, to fail to acknowlege the loss, to try and move forward without the grief and sadness. It is not pleasant or easy to recognize this sense of loss one feels and thus judge those feelings as unworthy or unacceptable. Yet the only way to truly proceed is to recognize that one did not want this to happen, that even the baby, were she able, would not have chosen this life course. By this means, one can come to appreciate that this baby belongs to one inextricably and that one's destinies are forever intertwined.

Another task is to accept that your spouse cannot be your counselor. The too are undre comparable levels of stress and feelings of loss and cannot be expected to take care of you. They may even seem particularly cold, uncaring or angry by withdrwing emotionally or being unusually irritable or easily frustrated. Try to assess together what each of you can do for the other and then try not to expect more than the other is currently able to provide. This requires talking about your feelings and needs in a way in which your spouse can best hear them. In other words, the packaging of your message becomes as important as the content. For example, if you say to your spouse, "Why don't you ever ask me how I'm doing anymore?" you are less likely to receive a constuctive response than if you were to say,"One thing you could do for me each day ia to ask me how my day was." Try to be realistic about what you need that the other can give and equally realistic about what you can give in relation to what the other is asking.

Try to find your way back to your spouse again and gradually reclaim some of that space and time you once had together. Discuss what routines, rituals or activities you once enjoyed doing together and determine what might be reinstituted. If it seems as though you did not share many interests in common, explore together those things you've thought of doing and see what ideas might overlap. It is a problem solving exercise to try not to use this time to complain or offer only regrets. The solution might be as simple as creating a time to take a 20 minute walk twice a week with the help of a neighbor/friend/family member to care for the child(ren) while they're asleep. Discuss the day, the latest news, whatever subject affords you the opportunity to connect and at the same time provide the perspective so often missing. Beware of television watching. While it certainly can be a useful escape and way to share an experience together, it also limits you to a singularly passive state. Vary your downtime activities consider listening to music, reading,, playing games, inviting over friends whose visit will not require significant preparation.

Some couples do encounter stresses in the marriage which seem overwhelming and which attempts to remedy the problems go nowhere or even make things worse. There are times when the best solution is seeking professional help; hopefully before you are feeling bitter or resetful towards the other. Remember, one of the losses is the very real of time you once had together and which would have resulted even if your baby had not been born with a disability. Fou you, your child-rearing tasks have increased exponentially and thus you have less to give towards other people, including your spouse. Couples counseling can provide a safe place where you can sort through the damage you feel has been done to the relationship and profit from the fact that someone else "out there" not only cares about each of you but also about your relationship. Sadly, our culture no longer provides natural supports for marriage and while to many counseling may seem a crutch, it is also a sorely needed resource which can even serve one over the family's life span, such as it's needed.

In seeking counseling, remember to trust your own instincts and intuitions in your choice of a counselor. Find someone with whom you both feel comfortable and respected and who you determine shares your values. No questions are too small to ask the prospective professional and it certainly is possible that seeing two or three counselors may make it easier to chose the one who is right for you.

Try not to compare yourself unfavorably to other couples in a similar situation. It is virtually impossible to know and thus truly understand what goes on in someone else's marriage and thus easy to assume that others have the secret of happiness that you have failed to find.


The Conformer

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My Sister by Kerry Nugent (a twleve year old sibling)

My sister Erin was born with one eye. To me, growing up with her was normal. Our rrelationship was just like the one between my little sister and I. We fought often and she bossed me around like any big sister would. She wasn't treated any better than me and my mom and dad didn't sow favoritism. Both my little sister and I never teased Erin about her eye because to us she was no different.

I never told people about her eye except once. When I was in first grade I remember having a friend whose brother was in Erin's grade. She asked me why Erin's eye looked different than the other. I kind of panicked when she asked me because no one ever had before. I ended up telling her that it was a prosthesis. The next day her brother teased Erin about what I had told her. Erin was upset and I knew that I did something wrong. Even now I kind of panic when someone asks me about her eye. I usually just change the subject.

Erin has had many surgeries over her life. When I think about her going to the hospital I picture the night before. I lie in bed and listen to her crying from fear. I always want to say something to comfort her but I don't know what to say. Whenever I do go in to say something she tries to hide her fear by bossing me around. When she comes home she is in a lot of pain. I don't know think I could handle it as well as she does. She never really complains about it.

Erin now runs on the cross country team. During this summer while everyone else on the team was training she was having surgeries. Even though she got a late start she did great. Erin doesn't let people's teasing stop her from doing things. She's confident, but nore imprtantly, she understands how people with other problems feel and treats them great. She is a wonderful person and sister. I'm very proud of her.

A Seeing Eye Dog - A Friend And Companion
by Ken Farris, a correspondent for The Wildwood Leader

You have seen them everywhere, helping the visually impaired board buses, trains and even planes. Seeing eye dogs can be a blind person's best friend. They are trained to ignore the temptations (other dogs, teasing children) that often distract other animals. They know their primary duty is to lead their masters around the daily obstacles and hazards sighted people seldom recognize.

Seeing eye dog guides have been assisting the blind since 1929. Originally founded in Nashville, Tennessee by Dorothy Harrison Eustace, The Seeing Eye, Inc. later moved to Morristown, New Jersey. The school is now recognized as the oldest guide dog school in the world. It works with approximately 400 blind persons a year and has matched over 11,000 dogs with masters.

As puppies, the dogs are sometimes reared by a "sighted" family. The benefits which accrues when a seeing eye puppy is raised by a foster family is that they can be more easily trained to be gentle and obedient animals. To accomplish this, The Seeing Eye, Inc. will often work in cooperation with a 4H volunteer club, People and Puppies At Work For Sight. The association, P.P.A.W.S. for short is located in Cape May County, New Jersey and is part of a youth development program spearheaded by the Rutgers Cooperative Extension Center.

The dogs selected for the program must meet certain criteria, one of the most important is the animal's hip width which allows the dog to walk very long periods of time without tiring. The selected puppies are trained using proven Seeing Eye methods. Temperament and obedience are critical and are a prerequisite to being selected for a formal three month training program.

The process of matching a seeing eye dog with a blind person can take additional time, normally a month, but once a match is found, the rewards are limitless. So, if you as a parent of a blind child are considering how to heop your child adjust, you night want to contact The Seeing Eye, Inc. at (201) 539-4425.


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The Conformer


The Bulletin Board

 1. ican has decided to try raising funds by selling The Entertainment TM Book. The concept was originally designed as a marketing vehicle to promote "local" entertainment establishments in most areas of the country. It later evolved into a quasi fund raising vehicle for charitable organizations hoping to both fund their efforts and provide a reward for their benefactors. Each book contains hundreds of Two-for-one discounts for fine dining, family dining, fast food, movies, sports activities, special attractions and hotels...50% savings on almost everything! The Entertainment TM Book, is now being sold by ican and a portion of the proceeds from the sale of each Entertainment TM Book will be used to help fund ican's endeavors. If you would like to order a regional Entertainmnet TM Book, please contact Bob Gomberg of ican at
1-800-580-ican.

We can order books for any area in the country. Please specify the quantity of books, as well as the country or city in which you reside. Bob will contact you regarding the cost.

2. Are you ready to surf the net, well ican is going on-line. The Conformer will now be available on-line as a result of a patient support link with Integrated Orbital Implants. The address can be accessed through a web browser at http://www.ioi.com/movements. The connection is through the Movements On-line web site which supports forums for both eye care professional and their patients. We wish to thank Silicon Beach Enterprises, an internet publisher, for their help in linking us with the World Wide Web.

 

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