Testimonials and Inspiration

Through a mother's Eyes

We were all moving along so quickly. Quickly going to and from work and school.... quickly going along life's journey. We had a plan. I always liked having a plan, setting goals and doing everything possible to accomplish them. We had married young and had spent ten happy years together. My husband and I were both working, my husband as a computer programmer/analyst, while I was going to school...forever going to school. We realized that the "right time" to have a child would never really arrive ("life is what happens when you're busy making plans") and so we decided to start a family. The pregnancy was wonderful and relatively uneventful. I state relatively because in about the seventh month our doctor was listening to our baby's heart and noticed some irregularity in the heartbeat. We went in for a level two ultrasound and wouldn't you know...the baby was turned away from the ultrasound device. They told us that everything seemed fine and not to worry. I'm so glad they did.

Three weeks early and in a hurry, Elissa was born. A baby girl! I wanted to ask the typical questions, "Does she have all of her fingers and toes?" and "How much does she weigh?" Within three minutes our doctor said, "She has several signs that lead me to believe she has Down syndrome." To this day, I am happy we did not find out Elissa had Down syndrome until after she was born. We were able to enjoy the pregnancy without having to worry unnecessarily. We were able to see her first as a new baby-a new baby girl - the first girl on my husband's side in several generations. The fact that we knew her first as a baby has been important for so many reasons. She is indeed so much more than some label. We realized early on that she is a unique individual who also happens to have Down syndrome. This realization has propelled me to passionately promote person-first language with family, friends and professionals. We want everyone know her first as we do, a child.

The first days in the hospital were unforgettable. My husband and I are both readers and researchers. My motto - if a challenge comes up in life, read as much as you can about it. Information has always been comforting to me. When I have information, I feel empowered. Fortunately, I was a schoolteacher and already had many wonderful experiences with children who had Down syndrome.

We knew the news would be difficult to share with our families because we wanted them to also know her first as our beautiful new baby. I didn't spend much time feeling anger. Grief, yes, but not anger. I grieved for the loss of the image of the baby I thought would come to be. Little did I know, she would be so much more and would bring out in the lives of those around her unconditional love, understanding, unbelievable pride, an appreciation and respect for diversity, and knowledge of God's love for all of humanity. I still sometimes grieve. Not for Elissa or for ourselves, but for the world that is still untouched by someone so small, yet able to teach us such intangible things.

Those first days seem so distant now. We are grateful for supportive people who are in our lives. Elissa is now four years old and is an amazing little person. She is very much the big sister to her brother Hayden. She has benefited greatly from excellent medical care, including open-heart surgery when she was four months old. She has also benefited from early intervention services including occupational therapy, physical therapy and speech therapy. We have been blessed to encounter so many people who have invested so much time and energy to her happiness and development. Elissa is very independent, always wanting to "do it myself". She is our constant reminder to value the right things, to appreciate the beauty in creation and to savor our time here on this earth. Life is not a race.

Through An Aunt's Eyes

I always knew that the baby my sister was carrying was going to be special. I knew it because every one of my nieces and nephews are special, and my own children are unbelievably special. But I couldn't believe my eyes when I first saw her. She was such a special baby. When my older sister told me that my niece had Down syndrome, I was concerned for my younger sister and her husband, yet I knew they would be celebrating the birth of their child, and that is just what we all did when we first saw her. Rhonda and Dean taught me right away that Elissa was a baby first and foremost. They didn't get angry and blame God; rather they accepted it as His will for their lives. She was a gift and the fact that she had Down Syndrome didn't make it any less of a celebration.

Ellisa melted my heart on that day just as she does every time I see her. "Karie's here!" she cries out as she sees me come into her house. Her eyes sparkle; she drops what she's doing to give me a hug and kiss. She knows how to make me feel special too. "More music!" she says and will spend time on my lap singing the songs of my own childhood.

She has taught me so many things already in her 4 years of life. She taught me how to be a better teacher by looking at the individuality of the students in my classroom and focus on their gifts not their downfalls. She is still teaching me to be patient. If I would wait just a little longer, she can do it all by herself. If I show her how to do it just one more time, she can get it right. She is a very typical 4 yr old, who loves to play with her friends, gets mad when she doesn't get her way, and LOVES to go to Karrie's!

Elissa teaches me to celebrate uniqueness. What does special mean? Uncommon, Noteworthy, Individual, and Unique. That definitely defines Elissa, and I wouldn't want it any other way.

Rebecca

March 10th, 2000, the day my daughter, Rebecca, was born and the day my life changed forever. After an uneventful pregnancy and normal delivery, you can imagine my shock when my daughter was born and I was informed that she most likely had Down syndrome and that she was so sick that she might not be able to come home, ever. I remember the fear I felt, wondering if she did die, what would be stronger, the feeling of sorrow or the feeling of relief?

It rained the day after Becca was born. I knew it was because the whole world was crying with me. I cried for my son, who's childhood would be cut short by the seriousness of having a very ill, disabled sibling. My son, who's adulthood would be filled with the responsibility and burden of caring for his sister. My son, who instead of the companionship of a sibling, would have to fight for the attention of parents who would be forever filled with sorrow.

I cried for my daughter. For the dreams I had for her that were now gone. For the life I knew she would never have. For the struggles and prejudices she would face. For the pain she was experiencing and the heartache that would fill her future.

I cried for everyone and everything. I cried until I thought I was empty and then I would cry some more. I was feeling so much yet, I was numb. It was like my world stopped but somehow the rest of it kept turning. I felt inadequate, scared, and defeated. I thought I would never laugh or know joy again. I was lost.

Friends and relatives called with messages of "I'm sorry", "You can do this", and "It will be ok." Not one "congratulations" in the bunch. I was told that only "special people" received "special children", I didn't feel very special. I was informed that "we never get more than we can handle" which made me wonder why the expectations were set so high and even if I could handle it, why did I have to prove it?

Four months and two surgeries later, Becca's medical condition had stabilized. One day I looked at her and was utterly amazed. For the first time, I saw Becca, not the characteristics of Down syndrome, not the surgery scars, I just saw my little girl. I have since realized that what I thought was a burden, is actually a wonderful blessing. Time had a way of healing her body and my spirit. Struggles that I was so overwhelmed with weren't "Down's issues", they were parent issues. I still have to fight to resist the urge to blame things on Down syndrome. Two year olds are stubborn, Down's or not. It is hard to balance your time as a parent, even when there isn't a disability involved.

My son, who was 2 when Becca was born, has never seen her as anything other than his sister, Boo-Girl. Now a mature 5, he is the only kid in his preschool class who knows the difference between speech and physical therapy. People often comment on how caring and kind he is, traits I like to think his sister taught him. I have overheard him tell a friend who was struggling with something, "That's ok. Everyone learns at different times."

Becca, well, she is wonderful. She has touched lives in ways I would have never thought possible. She brings joy wherever she goes. She has tremendous determination. She has strengthened my friendships, my faith, and my family. She makes everyone she meets better people than they were before they knew her.

And me, I still feel the sorrow sometimes but it is different. When I think back to the overwhelming grief and fear that consumed me when she was first born, it almost feels like I am thinking of someone else's story. I am learning to accept her limitations but refuse to put limits on her. I imagined I would spend all of my time teaching her the skills needed to live her life. Instead, she has taught me some of life's most important lessons. Life isn't a race. Perfection is overrated. Celebrate life's little victories and ignore it's little problems. Different does not mean bad. Most importantly, ability does not equal value. She means the world to me...both my kids do. I am proud to be their Mom.

Congratulations! You have a precious new baby!

Most likely this is the most difficult time of your life. You are probably asking, why? Why me? Why our baby? Why our family? That, we can't answer with complete certainty. But we can tell you for certain that you have been given a blessing. All babies are blessings,even the ones that look imperfect to the human eye. Our Megan has filled our hearts and so many others with warmth that is indescribable. We trust that your baby, like our Megan, will give you a greater understanding of life and love.

We found hope in the fact that other families worked through the same feelings of devastation. The words "your baby has Down syndrome" may bring days drenched with tremendous sorrow and days filled with great hope. You are no different than any other natural parent of a new baby with Down syndrome. Allow yourself to feel however you need to feel. Allow those close to you to do the same with their own emotions. Allow yourself to mourn the loss of the baby you thought you would have. You need to do this to heal and lovingly accept and bond to your new baby. Lean on your spouse and surround yourself with people who can provide love and acceptance of your child.

Our second daughter, Megan Anne, was born into this world on October 31, 2001. Her name was given to her in utero, because of its meaning...great pearl and gracious. We all have disabilities of our own in one way or another. Our hope is that Megan, along with your child, will help the world understand that we should accept one another for the love we have to share, and not to judge solely on ability or appearance.

Yes, your baby has Down syndrome, but he/she snuggles like a baby, smells like a baby, and will give you endless unconditional love. Seek out the facts. Learn as much as you possibly can. Meet other parents with children of all ages. Welcome to Holland! Enjoy the journey! Enjoy your beautiful baby!

Sincerely, Anna and Charlie Calhoun
Lincoln 421-1047

Favorite web-sites:
- www.downscity.com
- www.c-magic.com
- www.nads.org
- www.ds-health.com
- www.unomas21.com

Favorite Books
- You Will Dream New Dreams
- Expecting Adam
- Sometimes Miracles Hide
- Babies with Down Syndrome: A New Parent's Guide - 2nd Edition

Favorite Scripture:
"Our Lord and God! You are worthy to receive glory, honor, and power. For you created all things, and by your will they were given existence and life." Revelations 4:11
"Be glad and rejoice forever in what I create." Isaiah 65:18

Through a Father's Eyes

How does anyone put into words the emotions and thoughts regarding the birth of one of their children? This is especially true of a first child, without a previous well of experiences. My wife and I had roughly 9 months of major prep time. We purchased a lot of books, received much advice, took a Natural Childbirth class, took an infant CPR class, accumulated quite the load of baby stuff, amassed several well organized bags for the hospital trip - all pretty typical first time parent activities. Living in Kansas City, Missouri, we had many Baby Superstores to make sure we had everything on the checklists. We decided to let the sex of the baby be a surprise, especially due to the fact that our chances of having a girl were slim.

2 _ weeks prior to our due date, two good friends and their newborn daughter visited us for the weekend. My wife states that the lunch at KC Masterpiece barbeque started labor on that Sunday. Our friends left, and we did what most people probably do in early labor - panic! We tried to clean the house, clean the car, load the new baby seat, time all contractions with a stopwatch (I have the logs to prove it), etc. Around midnight, after doing some fast cramming on my Doula training that I was behind on, Rhonda told me to go to bed. Before long, I was showering and loading the car.

We drove to the hospital at 3 a.m. Monday morning, with contractions at 3 minutes apart, had the standard "do you really need to be here yet" monitoring, walked around an hour until contractions strengthened, had another monitoring session, and finally were admitted quickly to our birthing suite. By the time I hauled the rest of the luggage to the room, things were really moving. It only took 3 _ hours until the blessed moment. A man cannot understand the emotions and pain endured during labor and delivery, especially when your wife has no medication. I, however, can say that I have never had more admiration and pride for my wife than in those 3 _ hours. At 9:53am, I acquired the first glimpse of a baby's head. A few seconds later, the doctor announced that it was a girl. My father's side of the family had not had a girl for over 4 generations, so the surprise was overwhelming. I am man enough to say that I broke down and cried. Two minutes later while they were taking all my daughter's vitals under the warmer, the doctor came back over and informed us that Elissa appeared to have Down syndrome.

Looking back, I know that in my now "enlightened" state, I would have liked to have had different responses to many things over the next few minutes, days, and weeks. Not that it would have made a difference, but I am thankful that we welcomed our daughter into the world first - then received information about her diagnosis. First and foremost, she was our child that we had eagerly anticipated meeting for the last 9 months. She was a beautiful, perfect creation from God. Her medical diagnosis did not alter our love for her or her love for us. We needed each other, and I feel privileged that God chose us for each other. He knew that a mere medical condition would not define our daughter, who would grow, crawl, walk, talk, laugh, cry, sing, and read just like other kids - but at her own pace and with our loving direction. He knew Rhonda and I could handle this little challenge.

Now, with my "enlightened" statements above, I can also be honest. Was I in shock at the news two minutes after my daughter was born? Yes. You don't know how to react to that type of news at that moment in your life.

For starters, my wife and I were not in a position to sit down and discuss with each other much about this news - as we were new parents with nurses and doctors bustling about the room. We also had no family present on that day, as we lived 3+ hours from the closest relative, and my Dad's mother passed away that weekend and my side of the family was all attending the funeral. So - our immediate support network was comprised of my wife and I, God, and two wonderful birthing nurses.

That evening, Rhonda's family trekked down to Kansas City to see our new family. The next day, one of our nurses gave us a packet of information from the Kansas City Down Syndrome Guild. It was an older, very small New Parent Packet, but it did give us a list of current literature to obtain. I journeyed several blocks away to Barnes and Noble to find the first book on the list: Babies with Down Syndrome - A New Parents Guide. Our knowledge and confidence grew through reading, getting to know our daughter, prayer, networking, and wonderful medical personnel and therapists that plugged us into what we needed to know, who we needed to see, and when we needed to do things.

I remember two defining events the day of Elissa's birth. I saw that our main nurse Elizabeth was going to give Elissa her first sponge bath, and I asked if I might watch closely to learn. She told me "No", that she was going to just let me do it myself (with some guidance). That event really bonded Elissa and I as father and daughter. The second event was the call to Rhonda's parents to tell them we were parents. They had wondered why we weren't home, and they figured we must be at the hospital. The phone in our birthing room was ringing several times during delivery, which must have been my in-laws. I answered the phone sometime the first hour after Elissa's birth, and had the pleasure of telling my mother-in-law of our great news. I found that in trying to tell the first person about our daughter's birth, I was unable to speak.

The medical issues that surrounded Elissa did make life more interesting for the first 6 months (as it still does at times), but it made Rhonda and I STRONGER people. A friend of mine spoke a phrase that I have now taken to be my own: I am a better person today because of my daughter. This is not a haughty statement. I know that I value family more, I value the little achievements more (like shedding a tear when your daughter walks up the stairs without the railing for the first time), I value my responsibility to raise-the-bar for my daughter at every step of her life, I value my role as an advocate for my daughter, and I value my passion for spreading awareness to the community and others about Down syndrome. A very wise Physical Therapist, Jenny, once told us that we were very lucky parents, because Elissa would walk, talk, read, and do all the typical things in life - just with a little extra help.

Jacob's Story

Dear Parents,

Congratulations on the birth of your baby! We are Joel and Brenda Zinnecker. We are the parents of Jacob, our amazing 4 year old son. Jacob was born with Down syndrome. Although we couldn't see it at the time, God has definitely blessed our family with Jacob. We would like to share some of those blessings.

We were married October 5, 1991. In 1996 we were ready to start a family and tried unsuccessfully for a year and a half. In 1998 I found the right OB/GYN, had a major surgery in April 1998 to repair some things to enable a pregnancy, and became pregnant in June 1998.

We were absolutely thrilled. It was such a miracle for me to be pregnant. Eleven weeks into the pregnancy I experienced some cramping but fortunately did not miscarry. An ultrasound revealed nuchal thickening on Jacob's neck which we later learned can indicate Down syndrome. We were so relieved that Jacob was OK that the thought of having a baby with Down syndrome really didn't bother us. I had an ultrasound every month to monitor Jacob for heart defects and fetal development. We were fortunate to be among the 50% of babies born with Down syndrome that do not have heart problems. Throughout the pregnancy we never knew 100% that Jacob had Down syndrome. An amniocenteses was a risk we were not willing to take since it really didn't matter that Jacob might have Down syndrome.

I had a very normal pregnancy and even went 3 days overdue. On April 21, 1999 Jacob was born. He did have to stay in the neo-natal intensive care unit for 16 days due to low blood oxygen levels and low blood platelets. Most people wouldn't think of this as a blessing but for us it was. When Jacob was born the Doctors immediately suspected Down syndrome and a genetic test confirmed this a few days later. Having Jacob in the hospital gave us a chance to research Down syndrome and arm ourselves with knowledge to help our son. It was a packet like the one you are reading now that gave us the best sources of our information.

Today we are thankful that Jacob is healthy, active, and progressing well. The littlest things make him happy. He has taught us patience, understanding, and compassion. We are reminded how we live by God's plan, not our own. We have an appreciation for how the human body works and how hard children work to develop. It is such a joy to see Jacob accomplish something. Even though it takes Jacob a little longer to go from one developmental stage to the next, we get to enjoy that stage that much longer.

We know right now you might be overwhelmed at having a baby with Down syndrome. We were, too. Some things that helped us were to know that nothing we did or did not do caused our baby to have Down syndrome. You shouldn't feel guilty. You will have a new definition of what "normal" is for you. Having Jacob is normal to us. Remember, your baby is a baby that just happens to have Down syndrome. Your baby still can feel your love and needs to be loved for who he/she is. Expect challenges but don't expect less from your baby's potential. Your baby has the potential to be wonderful and do wonderful things. Lastly, don't be afraid to reach out for help. There are a lot of people who have been in your situation and can help you. We are here for you, too.

Sincerely,
Joel and Brenda Zinnecker
(402) 797-8106

My Perfect Child

As my children were born, I wanted them to be perfect. When they were babies, I wanted them to smile and be content playing with their toys. I wanted them to be happy and to laugh continually. I wanted them to see the goodness and beauty in life. As they grew older, I wanted them to be giving instead of selfish. I wanted them to stay innocent forever. As they became teenagers, I wanted them to be obedient and not rebellious, mannerly, not mouthy. I wanted them to be full of love, gentle, and kind. "Oh, God, please give me a child like this." was often my prayer. One day He did Some call her handicapped... I call her perfect.

Aidan's Gift by Valle Dwight

I think it's serendipitous that my second son's birthday is so close to Mother's Day. When Aidan arrived, I had already been a mother for more than three years. My first son, Timmy, a strongwilled, inquisitive boy, had taught my husband, Phil, and me many things like how to survive on four hours' sleep, the best ways to navigate through a tantrum, and how to hide vegetables in chili. But I don't think I came face to face with the true range of what motherhood means to me until Aidan entered our lives 18 months ago.

It was the first day of spring when Phil and I checked into the hospital. Shortly thereafter, Aidan came into the world looking very much like his brother, howling, arms and legs flailing, a mop of wild red hair matted to his head. But when the midwife handed him to me, I looked right into his tiny face and stopped for just one instant. Hmmm, I remember thinking, his eyes look a little strange. I quickly rejected that thought no, everything's fine and turned to Phil. We reveled in the afterglow of what had been an easy birth, and talked about how lucky we were. We were filled with gratitude for the beautiful family we had created, and looked forward to getting home and starting our lives together.

Then the nurse arrived to tell us that she needed to send the baby to the nursery because he was a little cold and they wanted to warm him up. She took him away, and we began to call family and friends to share the good news about our 8-pound, 13-ounce newborn son. But when Aidan still hadn't been returned an hour later, I had a nagging feeling that something was wrong. I didn't want to ruin the moment or lend weight to my fears so I said nothing to Phil.

The midwife arrived. She told us that there was a possibility our baby had "chromosomal problems." I refused to let it sink in. Oh, a chromosomal problem, I thought. I'm sure they can fix it. Although my mind hadn't registered her meaning, my body must have because a chill ran right to my neck. Phil was silent. Maybe one of us asked what she meant exactly. Maybe she spotted our look of obvious misunderstanding. So she spelled it out: "The nurse thinks he may have Down syndrome."

From where I sit now, I can split my life in two. There's the time before we heard those words, and the time after. Before, we were probably like most people. We knew we were lucky. We were healthy. Our little boy, Timmy, was funny and strong and happy. We had jobs and a loving family. But until we were hit with those words, I don't think we had any idea how fragile that luck can be.

I knew nothing about Down syndrome, but I had lots of frightening preconceptions. My first thought, even as I nursed him in the hospital, was "How will he get a job?" My instinct right from the start was to hold him tightly against a world that seemed irreversibly changed.

I thought back on my pregnancy, which had been uneventful. Because I was over 35, my doctor had advised me to have an amniocentesis. So I'd made an appointment for the prenatal test that was to determine whether my baby had a chromosomal abnormality or spina bifida. I got as far as the ultrasound. Just before the doctor started the test, I changed my mind. I told the doctor I didn't want to risk a miscarriage.

"Well, your chance is one in one hundred that you'll have a baby with Down syndrome," she said. "I've had ninety-nine other women in here this month and none of their babies had Down syndrome. You might be the one."

I had been ambivalent about the amnio from the start. Driving to the appointment, I'd told Phil that I didn't want to terminate the pregnancy no matter what the amnio revealed, and he'd agreed. We'd planned to have a second child, and there was no going back.

"Even if the baby has Down syndrome," I told the doctor, "I won't terminate the pregnancy, so what difference does it make?"

"Well, that's what everyone says," she told me. "But they change their minds when they get the test results."

I was offended by her flip attitude toward my baby. "Well, I'm not changing mine." And we left, clutching the ultrasound photos of our beautiful baby.

Now here I was five months later, holding my blue-eyed baby who suddenly seemed so distant. We took Aidan home and waited a week for the blood test that would tell us for certain whether the doctors' suspicions were correct. Meanwhile, we stared at him, wondering. We compared him to pictures of Timmy as a baby. And we went back and forth with each other: Did he look the same or different? And were the differences we saw a result of Down syndrome, or because he was a different person? I kept thinking about the moment he was born, when I'd noticed something odd about his eyes. But other times I'd reassure myself that he was no different from Timmy, that everything would be fine. It was an agonizing period.

By the time the results were in, I thought I'd resigned myself to the worst. But the news sent me reeling. I cried for two days. I was grieving for the baby we had expected, the only one we thought we were prepared for.

When the tears dried, I began the long learning process that will continue, I imagine, for the rest of my life. Having resolved to find out everything I could, I went online, I read books, I talked to people. I was surprised to discover that everyone in the world, it seemed, was either related to, went to school with, or grew up next door to someone with Down syndrome. Everyone but me. I discovered an Internet support group for parents, and at the urging of one of them, I posted a message announcing Aidan's birth. The fact that he had Down syndrome was understood. These parents wanted to know the truly important things, like our baby's height, weight, and hair color, and their interest put things into perspective for me.

Within days we had received more than 50 congratulatory notes not one "I'm sorry" among them. Our spirits soared. Friends and family had been very supportive, but, let's face it, they knew as much about Down syndrome as we had. And they were all a little sad, too. But these other parents weren't sad at all. They felt that their children were a great gift, Down syndrome or no.

As I pored over the books and talked with these other parents, I found the factual side of Down syndrome fairly easy to piece together. Also called Trisomy 21, it is caused when a person is born with three of the 21st chromosome rather than the usual two. This extra chromosome, and all its associated genes, alters the development of the body and brain. What this would mean for Aidan specifically would be hard to say, but he would be developmentally delayed to some degree (most people with Down syndrome fall in the moderate to mildly mentally retarded range) and would have low muscle tone. This would make it tougher for him to crawl, walk, and talk. The list of the other potential problems was daunting: heart defects, hearing loss, vision problems, small airways making children prone to upper respiratory infections, and on and on.

In fact, it seemed that we spent the first few months of Aidan's life in the offices of endless medical specialists, most with titles longer than our baby's tiny body. By his first birthday, Aidan had seen a pediatric cardiologist, pulmonologist, ophthalmologist, audiologist, and an orthopedist, to name a few.

Of course, there was nothing in those reference books that could fully explain the other side of the story the ups and downs of raising a child with Down syndrome in our society. That's what we've been learning from Aidan himself, and it's been a lesson filled with wonder. Aidan's life so far has been more complicated than Timmy's was. There are more ongoing appointments he has physical therapy, a play group, and a teacher once a week. There have been challenging days and frustrating moments as we've all struggled to learn about each other.

But we've come to recognize that we've had trying times with Timmy, too they've just been over different issues. Timmy never slept. Aidan goes to bed a 7:30 p.m. and wakes up laughing. Timmy threw tantrums to beat the band; Aidan definitely knows what he wants, but he's generally much less stubborn. We're learning, as all parents discover with the birth of their second child, that each child presents a unique set of challenges.

Aidan is actually more like other kids than he is different. He will learn to walk, talk, read, sing, and dance (you should see him rock to "Itsy-Bitsy Spider"), although he will have to work harder than most kids to reach those milestones. And we will have to slow down and allow him the extra time. Beyond that, he will have skills, talents, and quirks all his own. He already does. He scoots around the house using his bottom, two hands, and one foot faster than any crawler I've seen. He can find his Barney doll no matter how well we've hidden it. And he's already using sign language, predating his eventual use of words.

When Aidan was newly born, all I could think about when I looked at him was "Down syndrome." But now I see that the syndrome is just a small part of who he is and what he will become. Aidan has shown us that contrary to stereotypes, kids with Down syndrome aren't always sweet angels. When he does get angry, he can throw a tantrum to rival his brother's. When he doesn't want to eat, he sweeps his vegetables off the table with a stubborn flourish. And he hustles away with a backward glance and devilish giggle when he knows he's put something in his mouth that he shouldn't. Like the rest of us, kids with Down syndrome have a range of personalities, moods, and temperaments.

The future for people with Down syndrome is brighter than it has ever been, which makes me hopeful for my son's adulthood. Early intervention, medical advances, inclusive schools that educate all kids together, and new therapies have meant that people with Down syndrome can live longer, achieve more, and contribute to their communities in meaningful ways. Most of them graduate from high school, many live independently, marry, and have jobs. So while I wondered on Aidan's first day of life how he would even find a job, now I dream about the possibilities. Will he love the theater the way his father does? Maybe he'll want to work at a newspaper, as so many generations of my family have. Perhaps he'll be wiser than his parents and find work that actually makes money.

It has been only a short time since Aidan came into our world. To a degree, we're still on an emotional roller coaster. We have days of unadulterated joy over our family and what Aidan brings to us. And more wistful days when we wish that life was simpler, though these come less and less often. Sometimes I get sad about the might-have-beens, especially on the days when Timmy makes plans about things he and Aidan will do together, and I wonder which of those dreams will come true. Many days I feel guilty and unsure as to whether we're doing enough for Aidan. Would he be better off if we could afford this program, those vitamins, or that new therapy? And sometime I get scared about what's down the road, especially when I think of the struggles he may face making friends in those horrible junior high years, or making his way in a culture that places such high value on convention and looks.

But as we head into year two of Aidan's life, I've long since realized that our luck did not run out the day he was born. Not at all. In many ways, our lives have been transformed. We have found loving support from people who used to be strangers. We look at the world differently and consider ourselves lucky to be able to. We have an appreciation for a slower pace, we take greater delight in each small step. And we have a newfound understanding of the preciousness of all people.

Valle Dwight, an editor for Family PC, lives in Florence, Massachusetts. This essay first appeared in Family Fun magazine.

The Special Mother by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

**Taken from Motherhood: The Second Oldest Profession

Welcoming A Special Child by Edna Massimilla

A meeting was held quite far from Earth;
It's time for another birth.
Said the angels to the Lord above,
"This special child will need much Love".

He many not run, or laugh, or play:
His thoughts may seem quite far away.
In many ways he won't adapt.
He'll be known as handicapped.

So let's be careful where he's sent;
We want his life to be content.
Please Lord, find the parents who
will do a special job for you.

They will not realize right away
the leading role they're asked to play;
But with this child sent from above
comes stronger faith and richer love.

And soon they'll know the privilege given
in caring for their precious gift from heaven;
Their precious charge, so meek and mild,
is Heaven's very special child.

Whoever shall receive one of such children in my name, receiveth me.
Mark 9: 37