I remember when the doctors and nurse came back in the room about a half hour after they whisked Ben away without letting me hold him or even see him. When they told us they thought that he had Down Syndrome my response was just one word-"Wow" I just kept repeating it over and over. At that point it was a 'Wow' of shock, confusion, and slight disbelief. Later that night, I was finally able to see him in the NICU. As soon as I saw him it was confirmed for me; I could see it -I didn't need a test to prove it. It was then that I knew it was for sure and that we had to be strong and accept that the road ahead was going to be different than we had anticipated. I remember telling my parents that night and it was then that I realized that I was at peace with Ben's diagnosis. I remember thinking and at some point saying that we wouldn't have him unless someone "up there" thought we could handle it. (I had a couple of very special people in mind)

Despite this acceptance, we still had and continue to have our moments of frustration, anxiety and fear of the unknown but I can honestly say that my initial response of "Wow" has taken on new meaning. It is no longer one of bewilderment but rather, an exclamation of astonishment as to how much joy he brings to our lives. It is an exclamation of pride- he overcomes so many obstacles each day to do things that we all take for granted and he does it with such determination. Finally, it is an exclamation of gratitude- We now feel so lucky to have Ben in our lives. He teaches us such valuable life lessons every day. He will have delays and at 2 ½ he is not talking yet but his bright smile is truly worth a thousand words. Every time I see it I have yet another "WOW!" moment. Ben's mom.

It has been 18 months since the birth of our son Brian and it has been one crazy adventure. We were obviously shocked and saddened when we were told shortly after his birth that Brian was presenting with some characteristics associated with Trisomy 21. How do you wrap your head around that? Luckily, I had worked in Special Ed. and knew a few children with Down syndrome, so I wasn't totally in the dark about DS. Before the genetic test results came back, we had already begun the intake process for Early Intervention. We wanted to give Brian a good head start and get him the therapies he needed so he could have as bright a future as possible. It is still hard at times to think about the dream we had of having 2 healthy, typical boys. We wonder how this will affect our older son who was just 2 years old at the time Brian was born and how it will impact our life as a family. Let's face it, with all of the therapies, doctor appointments, stress, etc., it's hard to feel like our children are having the "normal" childhood our friends' kids are having. But we do many fun things as a family and we have also had the opportunity to experience things we wouldn't have been able to if Brian did not have Down syndrome. We have been a mentor family for Elmhurst College, we are involved with GiGi's Playhouse, and Tom is starting a dad's support group. We have been able to meet many people and do many fun activities through these avenues. So when you think about it, our children might not be having "normal" childhoods, but they are having wonderful experiences most people don't ever have. Brian is also able to touch and teach so many people.

A friend of ours in Kentucky sent us some wonderful information when she found out about Brian. A press release for GiGi's Playhouse which had opened 2 months before Brian's birth was included in that information. When we went to the Playhouse, we were amazed at the wonderful people we met there and we felt relieved to know that there were so many others like us who were affected by Down syndrome. The families we have met through the Playhouse and the boys & girls and men & women with DS that we have met are all incredible people!

As for Brian, he is such a great little guy! Everyone loves his smile and he has a laugh that makes you want to laugh right along with him! He just began crawling and the world is his to explore now! He can also be quite the mischief maker. He absolutely adores his big brother and the idol worship has begun. Brian enjoys meeting new people and can flirt with and grab the attention of just about anyone he sees. He seems to enjoy the spotlight. He also loves music, especially the drums, so maybe he and his big brother will start a band someday… He is all boy-loud and messy and rough & tumble. He can be really stubborn and headstrong, but he is very empathetic and loves to laugh and have fun. We have no doubt that he will do great things someday.

We are all put on this earth to teach each other and help each other understand different aspects about life and the world in which we live. Brian is teaching us not to take things for granted and to celebrate all accomplishments, big or small. He is also helping us discover how strong we are and how much we can actually handle even when we think we have been pushed to our limit. He brings joy and perspective to our lives.

Laura & Tom May

Daniella was born in February 2002. A day that will never be forgotten . She had a very rough start. We didn't think she was going to make it. As I laid on the recovery table after a c-section my husband came in to tell me Daniella also had signs of having Down syndrome . Still being half out of it I asked" What is Down syndrome? How can that be? Having placenta previa while being pregnant, I had every test possible and numerous ultrasounds. I was shocked and confused and didn't have a clue where to even start . Daniella came around very quickly letting us know she was going to be a little fighter and that she came to us for a reason.

After staying up all night crying and asking how this happened to us, we decided that crying was not going to get us anywhere. We wanted to talk to someone who had been through this. So we asked our nurse for help. She let us know that their was a labor and delivery nurse who has a 2yr. old son with Down syndrome. She was more than willing to come talk to us. So the following day they came to visit us, before going off to their superbowl party. She answered all of our questions, and helped us out tremendously by giving us all the information to contact NADS, Early Intervention, therapist, support group etc.

All I kept thinking about was how adorable her son was. He looked like a typical 2yr. old to me eating cheerios, playing, laughing and was even going to a superbowl party. So from that day on we knew we were going to do everything possible for our daughter.

My husband went home from the hospital and looked up everything and anything about Ds that he could find. He called all of our family and friends to let them know to treat Daniella just like they did when our son was born to still congratulate us, send the flowers, and gifts ,welcome her with all the hugs and kisses. He also had sent everyone the Down syndrome creed he had found while surfing the internet. He had already contacted NADS, EI , and therapists before Daniella and I were even home from the hospital so I have to say the phone calls were pretty overwhelming when we got home. I had no clue what an O.T. , P.T. , D.T, S.T. , Service coordinator were or what they did, but I learned pretty quick when they came to evaluate Daniella and started working with her.

Daniella started therapies when she was 3months old and has been thriving ever since . Her big brother Nick of course has a lot to do with it. He made sure he sat through every therapy session just so he knew what he could get Daniella to do and trust me it worked. Daniella is now a very active 3yr. old. She attends preshool four days a week , is enrolled in ballet , yoga, and a learning to read program. She cheers her brother on at all his hockey, football, and baseball games. She is already walking around with a hockey stick in her hand saying hockey because her brother always includes her in when he is playing with his friends. She couldn't ask for a better big brother.

Daniella amazes us everyday. She has quite the vocabulary already. She doesn't forget anything. If you show her something once she usually doesn't forget it. She loves playing with her dolls, coloring, reading books. listening to music, dancing. playing outside, and swimming.

I have to say Daniella has changed our lives so much!!! We couldn't imagine what we would do without her. She has introduced us to so many wonderful people from day one that we would have never met if it wasn't for her . We know we have a long road ahead of us , but we haved learned to appreciate things more. As with any child we don't know what the future is going to hold so we just take things day by day.

We are very fortunate to have a wonderful family, great therapists and teachers, and an awesome support system of old and new friends that will support Daniella and accept her for who she is and not for what she will or will not do. Daniella has already showed us she can do things that we never imagined she would!!! She will continue to do so at her own pace. Her charming personality, beautiful smile , persistent attitude and zest for life reminds me everyday I got the daughter I always wanted!

Theresa Caracci ( Daniella's Mom)

Ian

This is our son. He is named after his grandfathers, Raymond G. Jones and Francis E. Fergus. As a newborn, he was built like my grandmother's side of the family, the Stapleton's, round in the middle, arms and legs like the Michelin Man. His face was the spitting image of his Great Grandfather Francis Fergus. He can express an opinion or a feeling without uttering a word. He has great big blue eyes like his mom, most likely an Eckert trait. He can be as stubborn as a mule, another Eckert and Orth trait. He eats like a horse, another trait I attribute to the Stapleton's. He is not fond of activity after naps, much like his Uncle Bob. He is apt to flutter from conversation to conversation like his Aunt Kathy. He has been known to hold court like his Grandma Orth. He enjoys a good time just like Uncle Sheamus. His smile can light up a room, just like his Great Uncle Ed. The point being, Ian is first and foremost one of us. Ian shares the genetics, the traits and the attributes of people we love.

Ian is also genetically similar to some of the most inspiring individuals it has been our privilege to meet. Being born with Down Syndrome is genetic and it is not fair. It is not fair that our son could not walk until he was two. But now he runs. It is not fair that children the same age as our son can talk in complete sentences, expressing their needs, their fears and their feelings, while our son is struggling with single words. It has taken time, effort, work and sweat, but now he can talk your ear off and is learning new words every day.

Ian has forced us to appreciate the complexities of being human. There are physical, emotional and intellectual struggles that everyone has to deal with on a daily basis. People with Down Syndrome have to struggle a lot harder than the rest of us. It's not fair and sometimes it makes for days of doubt. Then you meet someone with Down Syndrome who has competed in the Special Olympics, graduated from high school with honors, or graduated from college. You see how individuals with Down Syndrome aspire to greatness in their own way and inspire the rest of us.

Our aspirations for our son are not limited. They are merely different. In the end, what really matters? Will he make a difference in the world? If many years from now his friends and family can say the world is a better place because Ian was here, then he will have succeeded where many "gifted individuals" have failed.

James

On June 17, 2003, God sent down an angel From heaven to me His fingers so tiny His heart like a lion The joy that he brought me I couldn't stop crying

A new term in my life Down syndrome would be It scared me a lot But ALL I could see Was his spirit so strong And how precious was he My sweet baby James My Angel Number Three

The reason I call him My Angel Number Three Is there's already sweet Rachel And sweet Stephanie

There's OT, there's PT And Speech therapy Can't forget about Group And Individual DT More doctors than I'd ever imagined there'd be But ANYTHING for My Angel Number Three

His favorite food Not determined quite yet, He's really not too picky But as far as dessert goes It's ice cream and Jello And boy that can surely get sticky!

His favorite things to do I'll try to list them all Are swimming at the pool And playing with a ball Swinging at the park Is surely number two To Barney and Friends And singing, "I Love You"

The magic he brings with those eyes and that smile I'm sure that you would agree That we ALL have been blessed From the heavens above By this Angel of mine Number Three

If you haven't seen his picture yet He's featured on the Creed Just pan along the left-hand side He's Angel Number Three!

Our Child, Our Miracle

We waited over 11 years to be blessed with a child. I thought my dream to be a mom would never come true. Then it happened and my journey began. We found out at 20 weeks that our child would be a girl with Down syndrome. Our heads swam. What was DS? What did it mean? How could this happen to us? What should we do? Our dream of our "perfect" baby was gone in an instant.

After we both decided to forge ahead into a very uncertain future, we shared the news with our family and friends. The outpouring of love and support amazed me. I knew right away that this would be a black and white issue for us. Either you loved and supported us and our daughter or you did not. No gray area, no in between. In a time where we had absolutely no control whatsoever, this was the one thing we could control.

My sister said something so profound to me. She said, "You know, there are no perfect adults, no perfect kids, so why do people expect perfect babies?" I often wonder to this day if she knows how greatly this idea affected us.

Jenny was born in 3 hours and 37 minutes. Obviously she was in a hurry then and has not stopped yet! It has not always been an easy road. She had ear tubes inserted when she was 17 months old and open heart surgery to repair a hole when she was 19 months old. Thankfully each surgery was a complete success.

My daughter has changed me in many ways. Life surely has not gone the way I'd always anticipated it would, but what gifts she has shared with me. I truly believe that having a child with DS has made me a much better mother. I was able to take advantage of some truly spectacular therapists through Early Intervention, absorbing knowledge and experience through them. They taught me to slow down and breathe; be consistent; be attentive; relish every success and trust my gut feelings.

It was very difficult for me to allow strangers into my home, let alone to allow them to tell me what my child lacked. But early on I knew that I had to put my pride aside so that Jenny could benefit from their knowledge. Trust me, it is not easy to hear the laundry list of what is wrong with your child. Nor is it easy to incorporate all the therapy into each day. You have to change your way of thinking. But if you can put aside your own feelings and concentrate just on your child's needs, success will surely come your way. It did for us.

The therapists called our house the "tough 'em up" camp! Everyone who came into contact with Jenny helped her. I knew we were on the right track when I heard a neighbor's child say to Jenny, "No, Jenny, I won't do it for you. YOU do the work!" Jenny has always had a large desire to learn. Early Intervention taught me how to teach her. And learn she did. Some things really quickly, some things very slowly. But she mastered them all in her time.

We just celebrated Jenny's 3rd birthday. She has aged out of Early Intervention and has begun preschool. We've done something right -- she literally runs down the walk to get to the bus each morning. No mother could be prouder than me.

My Dream Child

Jessica is a dream come true
A dream I never even had…
A dream I wanted to run from

Jessica is a dream come true
A dream called Down syndrome…
A dream that most fear

Jessica is a dream come true
A dream that has surprised me beyond belief…
A dream that I would not add to or take away from

Jessica is a dream come true
A dream that encourages more dreaming…
A dream that fulfills beyond imagination

Jessica is a dream come true
A dream that I would have never known to desire…
A dream that only God knew was right for me

Jessica is a dream come true
A dream that completes me…
A dream that has changed my life forever

Jessica is a dream…

A dream I cherish
A dream I would not trade
A dream I fully embrace
A dream that gives
A dream that loves Not an error,
but A God designed and orchestrated dream.

Kylie Langland

When I was 7 months pregnant with my daughter Kylie I had this strange feeling that she had Down syndrome. I was always curious about Down syndrome, whenever I saw a child or an adult with Down syndrome I couldn't help but be drawn to them. When my daughter was born on March 12, 2003 the first thing I thought in my head when I saw her was "Thank God she doesn't have Down syndrome".

Twelve hours later a non-expressive, no bedside manner pediatrician came in and told me (keep in mind I was by myself) that Kylie had some characteristics of Down syndrome. In that instance my whole life had changed. I kept wondering why did this happen to me? Why was I the chosen one? What would Kylie's future be like? There was one nurse who came in and said, "These children are Angels, and are given to Special People", I thought in my head gag me. I still to this day can't stand when people call kids and adults with Down syndrome ANGELS; I guess they haven't met my daughter yet.

Now Kylie is 2 years old (going on 30), she is walking, talking, and acting like a typical 2 year old. Kylie is a very intelligent, beautiful, funny, and stubborn little girl. I never treat her like she has Down syndrome (to be honest sometimes I forget). I will always have high expectations for her; Kylie is a little girl first who happens to have Down syndrome.

When I look at Kylie now I think to myself "Thank God she has Down syndrome", I couldn't imagine her any other way. I'm privileged and honored to be Kylie's Mom. Kylie's Mom, Sharon

Did you get your winning Lottery Ticket?

I remember the day like it was yesterday. The day my OB/GYN told me that my triple screen test came back abnormal. He told me that my odds should have been around 1 in 400 of having a child with DS but my results had come back and with the odds of 1 in 77. He told me that there are a lot of false positives in the screening and that I could do an amniocentesis to find out for sure if my child has DS. He warned that there are risks involved with doing an amnio and that I really didn't need to do the amnio unless I am would consider doing something about the pregnancy. Doing something about the pregnancy? Abort the baby? Did he really just give me that option? Well not exactly, at least not in IL. He said that I would have to go to another state to abort because as far along as I was it was illegal in IL. Was he crazy? I would never do that. This was MY baby!! All the way to work I cried and the same thoughts kept running over and over in my head. I have 3 healthy kids, 1 in 77, 3 healthy kids, 1 in 77, 1 in 77. If I had a 1 in 77% chance of winning the IL Mega Millions I would not win. This would never happen to me. I told my step mom about this whole triple screen thing that night. She has always worked with early childhood disabled kids. She said that of all the different disabilities she had worked with she enjoyed working with the DS kids the most and that I should spend the rest of my pregnancy learning everything I could about DS so that I would be prepared for what may lie ahead. Was she crazy? Did she not hear me say that I only have a 1 in 77% chance? I'm not going to hit that lotto. So I did not do what she told me and went on with my life as if nothing would be different with this baby than it was with the other 3 kids. On July 11, 2001 I was starting to worry, my baby had not moved all day. Maybe something was wrong? I go to the hospital and find out my baby is in distress and the doctors say that the baby may be dying, we need to get the baby out and into NICU. Little Michenzie is born by C Section, when she was born she did not cry which scared me more than anything. Oh yeah, scratch that LITTLE part she was 8lb 5oz. and the biggest baby in NICU, where she stayed for 3 weeks because her kidneys and lungs where failing. She came home with a feeding tube because she didn't know how to suck a nipple. Can you believe that? How can a baby not know how to suck? This stuff should come natural right? This is just the beginning of what Michenzie will have to be taught. Michenzie learns something new everyday and everyday she teaches us something about life. Here are some of my favorite quotes that help to summarize what she has taught me.

"I may not be there yet, but I'm closer than I was yesterday"

"The greatest oak was once a little nut who held its ground. "

"Look at a stone cutter hammering away at his rock, perhaps a hundred times without as much as a crack showing in it. Yet at the hundred-and-first blow it will split in two, and I know it was not the last blow that did it, but all that had gone before."

"Out of difficulties grow miracles." "Life's challenges are not supposed to paralyze you, they're supposed to help you discover who you are."

I can think of a few things that Michenzie will never have to be taught because they come very naturally for her. That is Love, Joy and Excitement. She is full of them and a little bit of attitude to boot!! July 11, 2001 is the day I won the lotto. Michenzie has and will continue to bring our entire family more fun, love, joy, excitement, and laughter than any amount of money from the Mega Millions could ever give us.

Wendy King Mother of Michenzie Michelle King 07/11/2001

The day was Thursday, February 19, 2004. I was sitting in my doctor's office waiting for him to come in and tell me that there weren't any complications with the amniocentesis I had done a few days earlier. I wasn't expecting the results to be in yet, so I thought the visit would be quick. My doctor walked in, sat down next to me and paused. As he told me the results of my test, I sat in disbelief. This couldn't be true. There had to be a mistake with the lab. Mike and I had waited five long years, endured countless cycles of IVF, and had experienced four miscarriages only to be surprised with the conception of Sam after we had started the adoption process.

Once we got over the initial shock of the news, we tried to go back to enjoying the pregnancy and planning for Sam's arrival. God had blessed us with a child. There was a reason why the circumstances were what they were; we just weren't privy to that information.

When Sam arrived a month earlier than expected, everybody was as prepared as they could be for his arrival into this world. Although he had no major heart issues, we were given another shock the day after he was born. Sam had cataracts and would need surgery. At five days of age, they removed the cataracts and replaced them with contacts.

Looking back over the past fifteen months we feel incredibly blessed. Sam has brought us so many "firsts" that have enriched our lives and the lives of others. The first time he moved his body to the sound of music almost brought me to tears as did the day he proudly demonstrated he could hold his own bottle. His laid-back personality and heart-warming smile make him incredibly lovable. We have our challenging days, like when he loses a contact or refuses to practice being on hands and knees, but we'd take these days a thousand times over, because the life we have is so much more fulfilling now that Sam is a part of it. Sam has Down Syndrome, but that doesn't mean that he-and we-can't dream big and reach high.

William and Landon

When William and Landon Schafer were born on April 9, 2003, we fell madly in love with them. They were greeted at home by big brothers Brandon, Joey, Evan, Ben and one big sister Amanda (and all of their friends!).

One-and-a-half months later, William went into congestive heart failure- that's when we discovered they were Down Syndrome.

William had heart surgery at 5 months old and is doing great! He's a little behind Landon in development because of his early set back, but he WILL succeed at his own pace! William loves Elmo, Veggie Tales, music, hugs, food, and (YES) Elmo!

Landon is the "HERE I AM" guy! He also had a hole in his heart, but his was in the upper chamber and has since closed without surgery! Landon is walking, saying some words, and is good at sign language, which we have learned a lot from our big sister (who is going to college next fall to be an interpreter for the hearing impaired!). He loves Elmo, music, Veggie Tales, hugs, food, and people!

They have added that little "extra" in life that we all need! They have touched many of strangers with their smiles, love, and personalities.

Bottom line: Everyone needs a "happy chromosome"! Maybe we would really take the time to "smell the roses"! Maybe we would all try harder with more patience! Most of all maybe we would all light up each others lives! We would like to thank Dr. Khan, Dr. Trapp, Dr. Long, Dr. Hotaling, Jen, Jenny, Jamie, and Mandy for being awesome Dr.'s and therapists! We would like to thank our relatives, friends, and even strangers for their immediate acceptance and love.

We would also like to thank Gigi's playhouse for spreading the positives and not the negatives!! Most of all we would like to thank God for these two special gifts God has given us- There is no greater gift we could ever get- this is a gift that definitely keeps on giving! UP WITH DOWNS!

Dean, Beth, Brandon, Amanda, Joey, Evan, Ben, William, and Landon