Dearest Friends,

You poor babies. I am not even having a meeting until September 16,1999 and still I write to you! (But it is cheaper than therapy! :-) I will enclose a calendar of events for you. Curt and I are picking up our missionary son Seth in Japan in July and life is just a little crazy so forgive me for the long break. Our meetings will be held on the third Thursday of every month. (with the exception of December and May.)

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Welcome new babies and families...

Jose David Benitez, March 1999 in Equator to proud parents Lucia & Jose Luis Benitez

"Angelica Shadow Feather Dominga Dodge" April 9, 1999 proud parents Gloria and David Dodge

Precious baby girl due in August 1999, to proud parents Chassie and Norman Clark

CONGRATULATIONS you dear families!

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"From My Heart to Yours..."

No one, not even the poets, can measure how much love the heart can hold."
Author unknown

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As you know, I am a mom of seven beautiful children. I am not a doctor or a scientist. And yet as a 'mom' I have learned some things the scientists the doctors, and even the poets have not. Some of the things I have learned they willnever fully understand.

I have learned when you tell a mother that her baby is going to have a disability, she will cry. She will struggle. She will feel inadequate to the call. She may even be mad at God for a time, wondering how and why this could happen to her baby.

But in time, things will change. God knows something that she does not. He knows, that no matter how disabled her baby is, she will fall madly in love with him. She may not even want to at first, but she will have no choice. She will love her baby in spite of herself.

I have learned that it is precisely because our world is not a perfect place, and because we have people who are born with disabilities, that I am so thankful I am a part of it. The greatest blessing of my life has been to people who have all kinds of disabilities. An even greater blessing for me has been getting to know their parents. They have taught me so much.

I have learned that as a society we have come very far. Not even 25 years ago we were still placing babies with Down syndrome in institutions. If you study how we treated people who had disabilities before time, you would be heart sick. Some were placed in 'insane asylums' . The way they were treated was inhumane . That was societies answer to how we handle disabilities.

Today we have come along way, yet we have a long way to go. We are more educated. We think we know what is best. Fourteen years ago at a pediatric convention in Spokane, I listened as doctors debated 'benefit vs. burden'. They asked "How fair is it to a family, to let them give birth to a child, knowing it will have a disability?" They talked a lot about 'quality of life'. What kind of 'quality of life' would that child have, and what kind of 'quality of life' would his parents have? They seemed quite sure a baby born with a disability was not a good thing.

When David was born (a short 15 years ago), I was told a baby with Down syndrome was born 1 in every 600 births. Today the statistics tell us that our babies are born 1 in every 1000 births. Are there less babies being conceived who have Down syndrome? No. It is just that parents know earlier now. Today as mothers find out prenatally, many decide to abort their babies. They are asked why would they want to 'burden' their other children with a sibling who has special needs.

It seems ironic to me that if a family is told before the baby is born, the information they are given is quite different than if the parents find our after their baby is born.

Last year at a genetics conference is California, we learned that out of every 100 mothers who found out prenatally that their baby would have Down syndrome, 95 % chose to abort their baby. Many parents I have spoken to tell me they were encouraged not burden their families with the challenges that having a child with special needs would present. Some were given a booklet that tells of 20 case scenarios. In this book 20 mothers faced the same hard decision. It told that 19 of them chose to abort their babies and told why they felt good doing so. The last one was a mother who chose to have her baby and then told that her baby died at 4 months of age.

I need your help. Will you help me compile a companion booklet to give to prospective parents? Please write to me and tell you your story. Be honest with your feelings. Share how you truly felt. (even if you didn't know prenatally) You don't have to be a writer, to share the feelings of your heart. Tell how it hard it felt the moment you were told. Tell of your discouragement, fear and heart ache. But then tell how you feel today. Are you a better person for having such a child? I think so.

Send it to me with a picture of your child also with your permission to publish your work. I want others mothers who face this difficult decision to know both sides.

They are still free to choose but at least they know they are not alone and that there are blessings to being a mother to a child who has special needs.

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Two weeks ago I attended a genetics conferences called, "Genetics' in the 21^st Century - Crisis and Opportunity" How appropriately it was named. I learned about the Human Genome Project (HGP)

Technically what that means is this...the human genomes refers to all the genetic information that resides in human cells. Begun in 1990 by the U.S. Congress, the HGP is jointly supported by the National Human Genome Research Institute (NHGRI) of the National Institutes of Health (NIH) and the Department of Energy (DOE) The 15 year goal of the U.S. Human Genome Project and it's worldwide counterpart, The Human Genome Organization (HUGO) is to develop methods, train scientists, and establish infrastructure to identify and determine the DNA sequence of all 80,000,100,000 genes contained in human cells. (Peters & Hadley, 1997)

But I learned something else. I learned that there needs to be those of us who will speak out for those who can not speak for themselves. Do you want to know what my greatest fear is? My greatest fear is that we will become so sophisticated in our quest for knowledge that we will forget the human heart. We will forget God's will.

Do people who have disabilities belong in our world? Can we as parents of a child who has special needs gain from the trials and challenges of raising our child?. I am 15 years down the road further than you, but my answer would be a resounding Yes!

Each challenge that has been placed in my path as I try to raise my son, has made me a better person. I have laughed and I have cried. Have I loved every minute of it? You've got to be crazy! :-) But these 'refiner's fires' have helped make me who I am. I love the line from the movie Fried Green Tomatoes,

"That which does not kill you makes you strong."

Is it hard sometimes? Yes. Are there days you cry and feel like life is unfair? Yes. But, have you gained anything by being your child's mom or dad? More than words can express. You have learned those lessons of the heart. Compassion, love, humor patience, and enough determination to hold on when the more logically thing would be to let go. Because of giving birth to a child less perfect, you have had incredible people placed in your path. And you have been placed in the path of others who needed to know what you know. Through this process God has chosen to help mold you, you are becoming more than you ever imagined.

Each day of my life with my son is nothing like I thought it would be and yet so much better. I have learned that each day counts. A closing speaker at the conference stated her desire was that all birth defects would be prevented. How my heart ached as I heard her say those words. I knew that she didn't have a child with special needs so she couldn't understand.

What does this all mean? To me it means that as science advances, one day there may never again be a child born into our world who has Down syndrome. What a sad day that will be. These professionals are trained in science, not in matters of the heart.

Scientists can not know what my heart tells me is true. That our kids have come to teach us what science and modern technology can not. That life, even with it's imperfections, is good. That as we serve and give our love to those who are different, as we are kind to people who have special needs, as we take the time to listen when it's sometimes hard to understand the words... we begin to see so much more.

We learned to be thankful for the simple gifts. We are learning to become the kind of people God intended all along.

Through our children we learn about courage. They teach us that there is still prejudice in the world, but they show us how to overcome it with unconditional love.

What a sad world indeed, when these teachers are taken from us..

Sometimes I wonder why God has chosen you and me, his least likely candidates, to fight these battles for those who can not speak for themselves.

Dr. Leslie Beisecker is a good person who also is very accomplished in his field. He has won numerous awards for his research in the field of genetics. He is an incredibly educated man. I am just a mom.

I spoke at the conference as a parent and as a consumer. Dr. Beisecker compared what Columbus did to the Human Genomes Project. He told of the possibilities of exciting discoveries. The thought was shared that in Columbus' day, few people had the vision and courage to make the journey that led to the discovery of a whole new world.

He then showed a cartoon of a caveman hiding behind a rock, poking a stick at a book. As he showed it, he said we should not be afraid of knowledge.

It is not 'knowledge'. I am afraid of Dr. Beisecker. I am afraid of is what mankind will do with that 'knowledge'. I tried to express my feelings of not wanting Down syndrome' to be eliminated from our world. I realized Dr. Biesecker did not truly understand when he responded, "I don't want to eliminate Down syndrome, I just want to help them have a higher intelligence."

What are the ethical, legal and social implications of such a project? Dr. Biesecker spoke of the ability to "bypass the effect of the mutation." I would love it if disease could be taken from our world. If the project can do that, then they have my vote. But I do not want the very people taken who can teach us the reason for our life.

I believe we are here in this life not only to gain knowledge, but to see what kind of people we will be. To be tried and tested. To see how we will treat others.

Even if technology could tell me prenatally that the baby I was carrying was going to be normal but that one day down the road, he would develop heart disease, I would still choose to have that baby. I believe all life is sacred.

I believe that as heart breaking as it is for a parent to lose a baby, even if that baby is only a few hours old, I honestly believe, even in that loss, that parent have gained.

Perhaps they only had enough time to hold their baby and whisper "I love you". But through that loss they will learn love.

I was born in 1952 so it was after World War II had ended. I never knew the man known as Adolph Hitler, but I knew he wanted to create a perfect race. In order to do so, he needed to eliminate the 'imperfect' ones. I am not saying those who believe in the Human Genomes Project are like Hitler, but I do know, if we take those from our society who are imperfect, we take from us the very people who bring us the most precious gifts of understanding and tolerance.

Many people spoke as I did, to share their concerns and fears. People who were Native Americans expressed their discomfort with this project as well as others.

I listened as my friend Mark Trombino, who is a dwarf, spoke of his life. He said because science can successfully detect the gene that causes his disability, dwarfism, realistically it can be done away with. But is this right? He said if he had a magic genie who could grant him three wishes, one of them would not be to be a 6' 2" tall. He said he loves his life just the way it is. He teased that if he suddenly woke up and were tall he would have so many other problems like having to go out and buy all new clothes. :-) Though he teased, we all understood what his real message was.

Mark, thank you for reminding the scientific community that the power they hold in their hands is sacred and must be morally examined. Who decides which lives are worth living and which are not? Who is to decide which unborn children are never granted the opportunity to take their first breath?

Yes, children born with Down syndrome are mentally handicapped. Forty percent of our children are born with a heart defect. A percentage have a hearing loss. Some of the have a higher chance of getting leukemia. Some don't even make it to their first year of life. Some live to be 60 and beyond. We often hear it is hard on siblings to have a brother or sister who has disability.

Though disabilities have many negative statistics, our children who have those disabilities bring much good into our world. As we grow with our children we learn that we all belong in our world.

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"Retard" - there are some words in the English language that can make you wince. For me, 'retard' is one of those words. Actually it does more than make me wince, it infuriates me, causes me to see red, and after 32 years is finally making me speak out.

The biggest offenders of the word are of course kids; kids that as you grow up your mother keeps telling you, "They don't really understand what they're saying, dear." But you know differently. These same kids grow into adolescence and become a bit more sophisticated. As they say it they look at you, smirk and say, "I meant that in the sense of the dictionary definition of the word, of course." Of course they don't.

I have studied language, majoring in theater in college. Words for me have a color, a texture, and flavor. Books are my favorite companions and if nothing else is available, I'm one of those people who will read the back of cereal boxes. I am also the twin to a young man born with Down syndrome.

I am not 'remarkable' or 'wonderful,' or feel myself particularly 'blessed'." Growing up, I can remember walking ten steps ahead of mother and brother and hoping no one noticed I was with them. I endured what I consider to have been a hellish childhood in rural upstate New York, as the farmer's kids made my life miserable riding back and forth on the school bus with my brother. I choked with suppressed rage every time these same kids chanted, "Retard, retard." Before making new friends, I'd have to brief them before coming home, warning them that Brian was 'different'. I lost a few chances with boys along the way because of my brother.

I have grown up. And so has Brian. In an eighth grade English class, a teacher discussing Fate and Shakespeare bombarded me with, "What good are these kids, those that are born relatively mindless? What good are they?" I didn't have an answer then. It was years until I found one.

Retarded "individuals, " retarded "citizens," retarded "brothers" are good simply because they are people just like you and me. They are the finest example of people living extraordinary lives in an ordinary way. They personify courage and loyalty and love. Because of Brian, I have experienced unconditional love. They make you try harder.