By Mary Jo Shepherd (Mom to Annabelle)

On December 7th, 2006 my life was blessed and my tiny little princess wasborn. I knew in my heart she was going to be special when she was due onChristmas Eve, my favorite day of the year. Instead of coming on Christmas Eve she came on another significant day, Pearl Harbor Day. Whether it is the significance of the day she was due, or the actual day she was born I don't know, but she has filled me with more grace than I ever thought I could have. My husband came into tell me that they saw the indications that Annabelle had Down Syndrome. I don't know if my reaction is typical or not, but I said, "So what?" She was my baby and I didn't care if she had Down Syndrome, up syndrome, or what ever she might have, she was baby and I just wanted to love her. We were blessed with Annabelle's health. It was in pretty good shape. Although she spent her first two weeks in the hospital gaining strength there have been no major medical complications. Annabelle is the youngest of five children. She has 12 and 10 year old brothers, and 8 and 7 year old sisters. Words cannot describe what she has brought to our family. The love and joy she has given to each one of us is truly overpowering. My husband, our children, and our whole family now feel we have a purpose to share how awesome it is to have a child with Down Syndrome in your family. Annabelle has given us all strength that we never thought we had. As she fights to keep up developmentally, we fight to make sure she gets everything she needs. We also educate people along the way, especially those who offer kind condolences about us having a child with Down Syndrome. Little do they know our dirty little secret that having a child with Down Syndrome is the greatest joy any mother could ever have. She truly has been sent here to love us and to teach us how to love, and not a day goes by that her bright smile doesn't melt the hearts of everyone who sees her. She has been a gift from God for our family and for all who love and care for us.

By Maria (mom to Nicholas)

It began in November of 2000. I checked my phone messages to only hear the concern in my doctor's voice over the results of my AFP test. The flow of uncertainty began to take over any means of rational thinking. I was close to 20 weeks into my pregnancy. I realized I must take the next step and acquire more information. So I opted for a level 2 ultra sound as opposed to an amnio. My chances for having a child with Down Syndrome (DS) was approximately 1 in 235 for my age, to 1 in 41 after the test. The ultrasound decreased those chances to 1 in 82. As we exited the hospital my husband looks at me and says, "That is almost a 1% chance." "If someone told you you had a 1% chance of winning the lottery, what would you think?" "Not a good chance", I said. After all, I'd had two other healthy children.

We waited with anticipation for the next 5 months. April 14, 2001 had arrived. The day our lives would forever change. The nurse set him in my arms and I looked directly into his eyes. My heart began to race and the tears began to flow. I asked myself, "Is this what it feels like to have your heart broken?" I looked at my husband and said the baby has DS. My husband could not understand how I knew just by that brief moment. A mother knows. The tests concluded that fact. He was given the name Nicholas, after my father. There was a hesitation to name him that, because I felt how could I honor my father with this child? That quickly changed when his grandfather loved him for who he was. There was great pride.

For the next 4 days, we cried and held eachother. The range of emotions were running rampant. Deep sadness, fear of the unknown, and a feeling of letting down our other children , just to name a few. Nicholas was born the weekend of Orthodox Easter. The most celebrated, joyous expression of love in our faith. I took this as a sign. God was telling me to celebrate this child, for he is pure love in every sense of the word. We realize now that he completes our family. He has opened the hearts of our family, church family and friends. Through Nicholas, we have met the most extraordinary people who continue to inspire us. We have also made many lasting friendships. Nicholas continues to make great strides. He is a happy, healthy, independent five year old who is full of life and high energy. He loves animals, music, squeezy hugs and playing with his older brother and sister. I'd like to close with a poem that I received at his birth. I still read it from time to time to remind myself that life with Nicholas will always be beautiful.

Ariana Elizabeth

Ariana Elizabeth was born on October 28, 2004. She arrived four weeks earlier than we had expected. I loved every minute of my pregnancy, but I was thrilled when that exciting time finally arrived! She was even more perfect than I could have ever imagined. My husband, our son and I were in awe of this beautiful little girl.

A few hours after her arrival, the nurses took her to the NICU to have her looked at for feeding purposes. Nearly five hours after that, we had a visit from the doctors. Apparently, they suspected that she had Down Syndrome, and they were concerned about her heart. My husband and I were both in shock. One minute we were on cloud nine, the next minute we were worried if she was going to survive. At that point, I was only concerned about her heart. Personally, I had plenty of experience working with people who had Down syndrome, because I was a Special Education teacher. So, I was not concerned about what she would accomplish. I was concerned whether she would even get that chance.

It was not long before the hospital became my home. I was worried about her health, yet everyone wanted to console me because she was born with Down Syndrome. I was always passionate about advocating for children with special needs, but I never imagined doing it in a hospital. It was not long when I started advocating for her; informing some of the nurses, even doctors, about people first language. As I sat in that hospital, my passion just continued to thrive. It was only a few weeks after Ariana’s birth when another baby with Down Syndrome was born. I began helping the new mom become aware of all the possibilities for her child. I felt as if everything was happening just as it should.

So many areas of our lives have been positively impacted because of Ariana. Before Ariana was born, I had planned on returning to the classroom as a full time teacher. However, I decided that my energy needed to be home with our daughter. I am so glad that I did, because I get to enjoy so many memorable moments, that I would have missed. It also gave me the opportunity to meet so many other families with small children. I began rethinking my career choice, and wondering what other ways I could advocate for our children. After discussing this with my girlfriend, who was also teacher, she decided to actually make the change. I gave her the number of Ariana’s case manger, and she landed the perfect job as an advocate for families. For myself, I volunteer as a literacy teacher at Gigi’s Playhouse Too. It keeps me teaching, but I also help parents through IEP issues or other questions when they come up.

Our son has been enriched by the entire journey. Watching and celebrating her achievements, learning sign language, getting involved with fundraising efforts, and spreading the awareness at his school. It has all been due to having Ariana for a sister. Just the other day, I over heard a conversation between him and his friends. It was all about how even though Ariana has Down syndrome, she can still do the same things we can. Listening to 10 year old boys discussing how people with Down syndrome can achieve and be included just like anyone else was amazing. They were already advocates and did not even it know it. It brought tears of joy to my eyes, since these children are the future generation.

Our entire family is more educated then ever. There was once a time that I would be discussing inclusion, IEP meetings, OT, PT, etc. and my family looked at me like I was speaking a different language. Now, its part of our everyday language. My sister in Ohio was advocating for inclusion with someone who was not very accepting of it. I was so proud of her. Ever since Ariana, her awareness behind the meaning grew. In addition she and her three children are all learning sign language. Even my six year old nephew is learning about Down syndrome and spreading the awareness in his class.
In general, Ariana’s birth has had a positive domino effect on our lives. I could go on forever on how different family members or friends have all been positively impacted and continue to be impacted by her life. Everyday, I am reminded of the greatness brought to our family, with just Ariana’s birth. I am amazed on how the awareness and support has just spread throughout my family and friends. I realize that what I did as an educator of children with special needs, in terms of advocacy, is nothing compared to what I have accomplished just being a parent of a child with Down Syndrome. I can honestly say that having Ariana has made me a better parent, more knowledgeable teacher, more successful advocate and a stronger person. I thank God everyday for giving us such a heavenly gift.

By Jessica Birmingham (mom to Bailey)

When Bailey was born and we found out that she had Down syndrome, I knew that we were going to have some hard times ahead. I didn’t find much comfort or encouragement from the medical world around me. Even books that we bought hoping to learn more about how we could help our daughter seemed to have a negative tone. Soon I realized that Bailey was teaching us herself. We didn’t need to depend solely on doctors or therapists or books. Day by day Bailey amazed us with her abilities. She became our source of hope and our pride and joy. We never could have imagined how much she was about to change our hearts and the hearts of our friends and family. Bailey has a smile that is 100% contagious. She doesn’t know a stranger, for everyone is her friend. Bailey rarely passes someone on the sidewalk without waving and saying “Hello!” She has become quite the little greeter in our neighborhood.

Bailey plays many roles in the lives of the people around her. She is a daughter, an older sister, a friend, a classmate and a neighbor. The most important role that she plays in my life is the role of a teacher. Bailey has taught me that it’s not only okay, but it’s fun to be different. She has taught me not to be in a hurry, but to slow down and enjoy every little detail. She has taught me that everyone has a blessing to share. The most important thing that she has taught me is that God has an amazing plan for each of our lives. I am so grateful that Bailey was a part of my plan. Yes, when Bailey was born I knew that we were going to have some hard times ahead. What I didn’t know is that those hard times would be so small in comparison to the joy, the love, and the happiness that she has brought to our family. Bailey is an amazing little girl with a very bright future ahead of her. I can’t wait to support her as she accomplishes all of her goals.

By Laura Kancler May (mom to Brian)

“You’re child is presenting with some characteristics associated with Down syndrome...” Those words are burned into my memory forever. The rest of what the neonatologist said is a blur. It wasn’t quite what we were expecting. We were expecting our 2nd, healthy, typical developing baby boy. That is what we were led to believe from the triple screen, through all of the ultrasounds, right up to that moment. “How’s his heart,” I asked (numb with shock). “We will do an ECG in the morning,” was the reply.
…I was sent here among you to teach and love as God in the heavens looks down from above…*

Before I became a stay-at-home mom, I worked for a school district under the Director of Student Services (special ed.), so I had a lot of experience with children with many different special needs and disabilities. I was a bit relieved that Brian was born with no health issues and with such a high profile disability. I had worked extensively with 2 students who had Down syndrome and I knew around 10 students with Down syndrome so I was familiar with the range of ABILITIES these children could have. So I said a little prayer after Brian was born and I hope that he will be the MAN who has attended college, has his driver’s license and some medals from the Special Olympics and has Down syndrome.
…but this family I’ve chosen will help me get started. For I am one of the children so special and few…*

Brian was 6 weeks old at his intake meeting. We began the EI process as soon as we got home from the hospital. 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. Although it has been a rough road at times with little time to be “normal,” Brian has been a trooper through it all. With all of the therapies, doctor appointments, stress, etc., it’s hard to feel like our sons are having the “normal” childhood our friends’ kids are having. But we do many fun things as a family and have also had some experiences we wouldn’t have been able to have if Brian did not have Down syndrome. We have met many wonderful people and attended many fun activities through GiGi’s Playhouse, parent support groups, our therapy providers and Elmhurst College where we have been a mentor family for the Education Program. So when I think about it, our children might not be having “normal” childhoods, but they are having rewarding experiences most people don’t ever have. Brian has also been able to touch and teach so many people.
…The Lord gave me life to live and embrace, and I’ll do it as you do but at my own pace.*

When people ask me “Is he always this happy?” I respond, “Except when he’s angry, hurt or being stubborn.” Brian has an incredible smile and a laugh that makes you want to laugh right along with him. Brian loves meeting new people and can flirt with and grab the attention of just about everyone he sees. He loves playing the drums and our piano so music therapy is the therapy he enjoys most. He loves Elmo and will do anything for his Daddy if he uses his Elmo voice. He signs and can say a few words and sure knows how to get his point across! Ball games are his favorite and he loves playing anything with his big brother, Jason. According to his therapists and their test results, Brian is right on track with some things and delayed in others. As with any other child, we work on his weaknesses and encourage and develop his strengths. 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. We’re extremely blessed with and proud of our two sons.

*taken from “Down Syndrome Creed,” author unknown

By_ (mom to Heather)

After Heather was born, several months passed before I could say the words “Down syndrome” without a tear coming to my eye. Now, I can talk about Down syndrome without crying, but sometimes I still do. At first I cried because I was so sad; now I cry because I am so moved by how amazingly wonderful my experience with Down syndrome has been. I have met so many inspiring people that I would not have met. I have been inspired to make changes in my life that I would not have made. I have become a better person than I ever thought I could be.

Heather is an amazing little girl. In the four years that she has been a part of our family she has certainly made an impact. We all take pride in her accomplishments. When she does something new, like saying a new word, her brothers will come running to tell me. They are so proud of her. When she learned to sit, crawl and walk we were all amazed. She had to work so hard, but she did it. I will never forget the day she brought home a paper from preschool – she had written an “H”. Now, she can write all of the letters in her name. She can recognize her name and the names of all of her classmates. Every day she continues to amaze me with what she has learned.

Heather has also made an impact on many other people: her grandparents, aunts, uncles, cousins, neighbors and even people she doesn’t know. Heather makes people smile wherever she goes. She instinctively includes everyone when she is playing. She feels sad for anyone who feels sad and will offer a hug or kiss. She says “hello” to anyone who will let her. She has such a beautiful way of getting people to smile. I believe it is her courage and compassion that inspires everyone around her. She also brings out the best in other people; the love and support that we have received from our family and friends has been unbelievable.

Heather participated in an Early Intervention program from the time she was three months old until she turned three. I was so inspired by the excellent work at this program that I went back to school to become a Developmental Therapist. I graduated last June with a master’s degree in Early Childhood Special Education and an Illinois teaching certificate for Early Childhood with a special education endorsement. I am now lucky enough to be employed by that program, and I am working with many of the therapists who worked with Heather before she started preschool. I love being able to help families of children with special needs at such a difficult time. I was so blessed that there was a place for us to go when we needed it.

Not all of what I have experienced with Down syndrome has been easy. In fact, some of it has been very difficult. Children with Down syndrome can be very fragile; they can have many medical issues and they must fight very hard to reach their potential. However, I know in my heart that these beautiful people with Down syndrome are the closest thing to angels here on earth and I am touched every day by the depth of their beauty and how easily they spread love and joy to people around them.

My daughter has taught me to appreciate the things in life that really matter. She is always full of love and laughter – what else do you really need? With a little faith and a lot of hard work, I know she will live her life to its full potential and impact this world in her own special, perfect way. I am very proud to be her mom.

By Wayne (Jenna)

I was writing a very important letter and speech for work. I was very focused on what I was trying to accomplish and how it was going to be received, when I heard a laugh coming from above. My Home Office is in our basement, in a corner just below our family room. From my office I can hear everything going on in the house. This particular afternoon I am deeply focused. The words are pouring out as I compose the aforementioned letter. I remember writing the following ‘with information comes responsibility. If you have taken responsibility without any usable information you are a pioneer’. Just as I completed that sentence a laugh came from the ceiling above me and it was my daughter, laughing like I had never heard before. My son, Will, was playing with my Daughter, Jenna, and had started something that broke my concentration, it was laughter. Will and Jenna have a relationship I will never fully understand, but today I got a glimpse of the joy they find in each other. As Jenna is laughing so then is Will and shortly after my wife Julie joins in. It was so engaging that I sat back in my chair and I too started to laugh. Today it is hard to remember any specific pain of only 3yrs ago, a moment that we couldn’t wait to replace with laughter.

I am thinking back to the day that Julie and I found out that Jenna was going to be born with Down syndrome. It was a quiet afternoon, Will was taking a nap and Julie and I were sitting on the couch. The phone rang and it was the Doctor telling Julie that her test results had come back and that our unborn daughter had Down Syndrome. What do you say? Who do you say it too? How do you say it? For Julie and me it was probably our shinning moment as parents. After a few minutes of talking and crying we looked at each other and said, ‘ok, what’s next’? Fast-forward about 2 or 3 days and Julie is in the middle of an information-gathering mission, of the likes I had never seen before. She spent hours cruising the web trying to get as much information as she could find on Down Syndrome, some was good and some was awful. In the midst of all of our research, thankfully, we were contacted by a local parent support group who gave us accurate updated information and a realistic view of what having a child with Down Syndrome was like. Prepare for the worst, hope for the best. The fact of the matter was, to us, Down Syndrome wasn’t the worst thing that could happen. Prior to our prenatal diagnosis of Down Syndrome, my Mother-in-Law was diagnosed with end stage Lung Cancer. This moment of uncertainty about our daughter was overshadowed by the fact that Julie’s Mom was dying. The time Julie spent researching Down Syndrome and educating herself about every aspect of it kept her mind off of the other worries in her life. We were having a baby girl, who happened to have Down Syndrome. Down Syndrome was not a death sentence. From that moment, we knew things, no matter how difficult, would be ok. “With information comes responsibility…

On February 4, 2003, Jenna Grace was born, a healthy 8lbs 3 ounces.
To this day I am and will always be thankful for what I have been given. Julie, William and Jenna are the lights which guide me and keep me happiest on the darkest days.

Jenna is a bright 3 year old little girl (daddy’s little girl), not a burden. She is a gift to our whole family. She is the reason my son laughs uncontrollably (and the reason he yells the same). She is the reason my wife has become an even stronger and more loving person than even I thought possible and why I find myself at a loss for words when describing the joy she brings me everyday.

During the past 3yrs, Julie and I have become involved with local Down Syndrome organizations including Gigi’s Playhouse. We may not be ‘pioneers’ but by passing along what we have learned I hope we have enlightened, educated and encouraged those families who follow.

By Sharon (mom to Kylie)

When I was 7 months pregnant with my daughter Kylie, I had a 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 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 the pediatrician came in and told me 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?

Now Kylie is 3 years old (going on 30). She is walking talking and acting like a typical 3 year old. Kylie is intelligent, beautiful, funny and a stubborn little girl (like her aunt). I never treat her like she has Down syndrome (to be honest I sometimes forget). I will always have high expectations for her. Kylie is a little girl first that so 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 am privileged and honored to be Kylie’s Mom.

By Debbie (mom to Madisyn)

Madisyn was born on December 16, 1999, just one year and five days after her sister Maison. The labor and delivery were very much the same as I had experienced one year prior. Only Madisyn was abruptly whisked away.
After three hours of waiting to see and hold our new baby, the neonatologist came into the room with an explanation. Madisyn had two holes in her heart and he suspected that she might have Down syndrome. He explained that genetic testing was done and that we would have the results in a few days. I didn’t need to know the results of the genetic testing because I knew the moment that they wheeled me in to see Madisyn that she had Down syndrome. Within hours she was rushed to Children’s Memorial Hospital because they were better equipped to care for her heart defect there.
Madisyn spent the first week of her life in Children’s Memorial Hospital and I spent most of my free time learning as much as I could about Down syndrome. Initially, I was focusing on the Down syndrome until one day I realized that the Down syndrome was the least of our worries, her heart defect was the more serious concern. Madisyn had an atria-ventricular canal defect that required three open heart surgeries to repair. Madisyn had all three of her surgeries before the age of two.

Needless to say, doctors, hospitals, medication and therapies became a way of life for us. While Madisyn has endured more than most people do in a lifetime, that hasn’t stopped her at all. Today, she is a very happy, fun-loving, six year old little girl that tries very hard to do the things that most of us take for granted. The best part is that she believes she can do anything and tries to do it all! Her determination just amazes me. Her daddy calls her his “little engine that could.”

Madisyn started Kindergarten this past fall and absolutely loves it! She is a Daisy Girl Scout and will become a Brownie at the end of the school year. She has taken ballet and acting classes and does a little modeling part-time. She loves books, music, American Girl dolls, horses, people and life in general.
I thank God every day for her. While the journey hasn’t been all that easy for us, I wouldn’t change a thing. She has taught us so much, mostly, that each day is a gift to be cherished. She has such an infectious spirit that spreads love, joy, and inspiration everywhere she goes!

By the Parents of Mickey

There's a saying that goes - 'Wish I knew then what I know now' that's how we feel. It makes me feel guilty to think about how we felt when we learned of Mickey's diagnosis. I was half way through my pregnancy and we heard the word Down syndrome come out of the doctor’s mouth and I felt like my whole life changed that instant. As a parent you never know what to expect - you can't plan how your life is going to turn out and how your kids will be. But you like to think you have some control. Most of our fears were of the unknown. As we started to educate ourselves on what this all meant we started to feel much better.
Mickey is now 13 months old and brings total joy to everyday. He is sweet, laid back, and happy. He has a smile that makes you melt (or at least it makes me melt!) Of course we have concerns for the future, but we have the same concerns for our 3 year old Ella.
We've thought from the beginning that having Mickey in our lives will
make us better people. I feel lucky to be his mom and look forward to what the future holds for our family.

By Michelle (mom to Faith)

When I was pregnant I had no indication that my daughter might have Down Syndrome. On November 22, 2003 our daughter Faith Camryn was born into this world. It was the happiest day of our lives. The next morning a pediatrician came in and told me that my daughter has some characteristics of Trisomy 21 which we later learned was Down Syndrome. After the pediatrician left the room I just cried and cried. I kept thinking why me and what did I do wrong. I was in the room all alone and when my husband returned I had to tell him the news. We were in a state of shock.

When we left the hospital we got in touch with a couple that has a child with Down Syndrome. After talking with them we found out there is a support group in Rockford, Illinois. We have found the support group to be very helpful. We started Faith in Early Intervention when she was 3 months old.

When Faith was 6 months old she had to under go open heart surgery to repair a hole at the Children’s Hospital of Wisconsin. The surgery was a success. Ever since her surgery, Faith has been a little trooper. A few months after her heart surgery we started the therapies up again. They have made her very strong.

Faith is 2 years old and she loves Aqua therapy, reading books, listening to music and most of all she loves her big sister Alyssa and her little sister Kendra.
Faith has changed our lives so much. We couldn’t imagine our lives without her. She has brought us so much joy. We are glad God brought Faith Camryn into our lives.

By the Parents of Brandon

When we became pregnant with our second child, our daughter was only 6 months old. While we were both overjoyed knowing we were going to have our second child, we knew our lives would be busy, to say the least. The pregnancy went just like our first, with no complications or concerns. At the second ultrasound we found out that he was a boy, and named him Brandon Michael Rumphol. It made us both happy to be able to call him by name. Somehow it made our son more “real” to us. We were already in love with him. Now we just knew his name.

I went into labor on the morning of October 19th, 2005. The time we though would never come was finally here. Everything went flawlessly, as it had for our daughter’s C-Section. Once Brandon was taken to be cleaned up, the nurses spotted something and called for the neonatal specialist. They in turn called for their colleague to come in and look at Brandon. We had no idea what was being discussed, until a nurse informed us that our son had “soft signs of Down Syndrome.” Brandon spent to next five days in neonatal intensive care for pulmonary hypertension on oxygen. We spent several days waiting for test results praying with friends and family for Brandon’s safety.

The test results came in, and Brandon did have Down Syndrome. Brandon has Translocated Down Syndrome, which means his extra 21st chromosome is attached to one of his 14th chromosomes. The implications are the same, he still has Down Syndrome, the placement of his extra chromosome is the only difference. The remaining days at the hospital were spent talking with the doctor in charge of Brandon. While he didn’t hold to a negative view of Brandon’s diagnosis, no positive aspects were reinforced. We were repeatedly talked down to with statements of little meaning. The doctor appeared to have a hard time understanding that we accepted Brandon, no matter how many times we told him. It did not matter to us that our son had Down Syndrome, he was created how God intended him to be, we had loved him immensely since he was conceived, and Down Syndrome didn’t change a thing. We were going to do whatever he needed. A statement such as this would be glazed over, and we would be told how he would, “pee and poop just like a normal baby.” After several days of this, we just wanted to take Brandon home.

When we went to GiGi’s Playhouse, it was the first time we told someone that Brandon had Down Syndrome and we received an overjoyed reaction. “Congratulations!,” was a welcome change. We had heard, “I’m sorry,” from almost everyone outside of family and close friends when they found out Brandon had Down Sydrome. In retrospect, it was only the people who did not know about Down Syndrome who had that reaction. We are always quick to tell them what a blessing Brandon is, and the last thing in the world our family need is an apology. Personally, we feel like we have won the lottery by having him. We are so thankful to have an organization like Gigi’s Playhouse to be involved with, and help spread Down Syndrome Awareness. Even though he is only an infant, it is amazing to see the impact that Brandon’s loving personality has on those he comes in contact with. Once you know someone with Down Syndrome, Gigi’s Playhouse’s slogan becomes even more meaningful and personal. Help us spread the love.

By Catherine (mom to Nolan)

During the 20th week of my pregnancy, my husband and I found out through an ultrasound that our baby had enlarged kidneys. I was scared and worried after hearing this news. My OB tried to assure me that it was probably nothing, but she wanted to have another ultrasound done just to be sure. She sent us to a perinatologist to have a level two ultrasound. He confirmed what was originally found, and the baby’s kidneys were monitored throughout my pregnancy. The perinatologist also told us that this was the most common problem found in fetuses and that in rare cases (in less than 1%) it could be secondary to a genetic disorder, such as Down Syndrome. I passed it off as a disclaimer. I was thinking positively because there was more than a 99% chance that it wasn’t a genetic disorder, and those seemed like pretty good odds. The doctor repeatedly asked me if I wanted an amniocentesis. I repeatedly told him no. I had already declined to have the triple screen blood test done and there was no reason to do an amniocentesis either because it wouldn’t have changed anything. He performed many other tests to rule out Down Syndrome and everything came back normal. He suggested that our baby be delivered at 32 weeks gestation after giving me steroids to develop the baby’s lungs. His reason behind this was to fix the kidneys as soon as possible. But there was no way I was going to do that. I wanted our baby to grow and mature as much as possible before coming into this world. I told my OB about my negative feelings about this doctor and his bedside manner, and she referred me to another perinatologist who was wonderful. The new perinatologist did several more level two ultrasounds and my regular OB did a couple of non-stress tests to monitor the baby’s heart.
On February 15, 2005, I went for what was my last level two ultrasound and non-stress test that eventually led to a stress test. The baby’s heart was decelerating with every contraction and was in fetal distress. They advised me to have an emergency C-section. This is not what we had intended but they informed us this was the safest way for the baby to be born, so of course we agreed. My spinal was given around 6 p.m. and our baby was born at 6:19 p.m. It was a boy! He looked very healthy and cried immediately. I had a sigh of relief. The next thing I remember is the doctor talking to my husband, Sean. Sean came to my side and I asked him if everything was okay. He said yes. I asked if the baby was healthy. He said yes. However, I could see in his eyes that something wasn’t quite right. That disclaimer that the first neonatologist had given immediately popped into my mind. I then asked if he our baby had Down Syndrome. He said yes. My whole world came crashing down.

Our son, Nolan, spent over a month in the Neonatal Intensive Care Unit. He eventually came home on a nasogastric feeding tube and on several medications. Nolan had had open heart surgery to repair a ventricular septal defect at four months old. He also recently had surgeries to repair his kidney. He is very resilient and recovered quickly after each surgery. Of course these surgeries put stress on Nolan and our family but needed to be done so he could live a happy and healthy life. Today Nolan is strong, healthy and very happy. Nolan is already one year old. He is a curious little boy. He is crawling everywhere and getting into everything. He loves music, and his favorite thing to do is to dance. Nolan’s therapists absolutely adore him. I love hearing how well he is doing and know they mean it. They, like me and many others, are amazed by him. They say he is attentive, cooperative, and make their jobs look easy.

In the past year, a lot has changed. After his birth, I actually mourned the loss of the baby I thought I was going to have. My dreams were shattered. Now, though, I have new dreams and they are even bigger and better than the old ones. If only I could’ve known then what I know now. We thank God every day for giving us Nolan. We appreciate all the people who prayed and continue to pray for Nolan and our family. We are so grateful for all the people who have supported us in our journey. It is amazing how many wonderful people have come into my life since Nolan was born.

Nolan is truly my world. To see his smile when he wakes each morning really makes my day. To feel his kiss upon my face melts my heart. To watch him sleep to witness an angel in disguise. He is such a happy little boy and spreads happiness wherever he goes. I know he is special too, not because he has Down Syndrome, but because of who he is. I know he makes a difference in the world, and I am a better person for knowing him. He has taught me more things in the last year than I would have learned over my lifetime. I wish there were more people like Nolan in the world because I feel it would sincerely be a better place. I am so very proud to be called his mother.

Double Surprises, Double Blessings

We knew prenatally that we had a chance that the twins would have Down syndrome. Our first ultrasound showed one soft marker for the designer genes. We decided that we would love whatever God gave us, and declined further testing.

I was a surprise to us to find out the twins do in fact have that special extra chromosome. It was also a surprise to us that they were born with a rare form of leukemia. I consider myself very lucky that the twins have Down syndrome. Why? Down syndrome ‘protected’ them from the leukemia.

One thing I remember the most about those first few weeks were all the comments I received. My sister-in-law, Nancy, said it the best, “These kids are going to surprise you with all their potential, just you wait!” Surprise me indeed! A couple of the physical milestones they met that blew me out of the water include Matthew rolling at two weeks and John at 30 days. John learning how to drink from a straw after 3 days of practice and Matthew picked up straw drinking in a week. Many people think children with Down syndrome won’t walk before two. On their second birthday, they both walked into the doctor’s office unassisted.

However, the sweetest surprise of all is the love and happiness that radiates from them. I have a hard time explaining it. I want to say it is unconditional love but it is more than that. The sparkle in their smile, the ever-present gleam in their eyes, the joy in their laugh, the hop in their step, the kindness in their wave, and the cheer in their voices, make even the dreariest of days bright.
What does the future hold for my children? Although I don’t know what the future holds for my children, I am positive that they will continue to bring joy to everyone they meet. I am often told that adults with Down syndrome can hold a job at the local supermarket as a bagger or department store as a greeter. If that is what John and Matthew decided to do with their lives, I will support them 100%. However, today there is over 100 colleges in the US that have programs geared for adults with Down syndrome. . I am positive that number will be substantially higher when John and Matthew decide if furthering their studies is right for them. Either way, they have my blessing. The sky is the limit!
Wendy

Bret
Bret is 9 years old. He is in the 4th grade. Some of his favorite things to do are to ride his bike, read books, play with his brothers and friends, play with Murdoc who is the neighbor’s dog, watch television, swim and socialize.

Bret has a big brother named Alec who is 11 years old. Bret idolizes Alec and wants to be cool like him. Chad who is 5 years old is Bret’s pal. They do just about everything together including goofing around, fighting and making up.

Bret is a happy go lucky kind of kid. He loves being with people and just hanging out. He likes school and all the friends and teachers who surround him. He has this cute aroma about him that draws people near to him. People smile when they come into contact with him. His speech is limited but people take the time to understand him. He has a smile and laugh that makes others smile and laugh.

Bret is a blessing to our family. He is a good, kind hearted little boy who has taught the family many lessons. He has taught us patience. Shown us to slow down and smell the roses. He has taught us to look at things differently and to adapt to situations.

Embrace life and live it to the fullest!

The Unplanned Journey
In 2003, my husband Jeff and I longed for a life with a baby boy. So, at age 34, we were off for our first prenatal visit. With two girls at home, we were desperately hoping that this would be the pregnancy that would give us that baby boy.

At 34, I never thought of myself as being old. Actually, I never gave it much thought until my OB suggested that I have an amniocentesis done. Jeff absolutely refused. There was no reasoning with him. I, on the other hand, wanted it done. Being a nurse I knew the responsibility a mother has to commit when a child is born with a disability. I was not sure I wanted to risk having to make that commitment. We argued many nights about the amniocentesis. One night I was furious and done arguing about it. I just finally agreed not to have the amniocentesis but remember mumbling under my breath, “ If there is anything wrong with this baby , like Down syndrome, it is going to be all your fault.” (If only I had known).

In November, Jeff and I went for our first ultrasound. The news we received was shocking. Twins! I knew that there was never a chance that I would ever receive more shocking news than that. Twins! We were being blessed with two baby boys. Form that point forward the boys became known as Baby A and Baby B. We were so in love with the idea of having two baby boys! Our journey was just beginning.

The journey or pregnancy, was going well until at 29 and 1⁄2 weeks when I went into preterm labor, was hospitalized and placed on bed rest - or as I preferred to call it “house arrest”! The pregnancy seemed normal for twins. I was told that everything was going great. But I always had a feeling that things were not as they seemed.

On April 1, the day before I was to go to the hospital to be induced, I called my friend crying. “One of the twins has Down syndrome”, I said. “You just have those worries that every mom has. Everything is going to be fine.”“You have had four ultrasounds that have all been normal. You are just scared.” “I guess you are right. The boys are going to be fine.” I hung up and cried for hours. I tried to convince myself that the boys were fine but my mother’s intuition told me otherwise.

It was April 2nd, 2004, and our whole family was there anxiously awaiting the arrival of A and B. I remember the excitement and commotion in the room preparing for the twins. The time was here. We were finally going to meet the little guys that we had become so attached to.

The plan was that Baby A would be delivered. And, Baby B, being the baby on the top, would just follow Baby A out into the world. Sometimes things just do not go as planned.

Baby A was delivered and was perfect in every way. Baby B was very comfortable , very stubborn and very determined not to follow the plan. It took seven minutes to deliver baby B as a breech, feet first delivery.
I could see my doctor’s eyes from under the mask. There was a different look. There was silence in the room as the nurse performed her assessment. “Hypotonia”, she said. He shook his head. I did not remember that from nursing school. “I see the simian crease”, she said. I remembered those words and their meaning. And then it was like there was an echo in the room, as if I was an outsider looking in. Then it came - that shocking news that I was never supposed to get. “I am 99% sure that Ryan has Down syndrome.“

As I laid on the table waiting to hold him,I kept hearing those words in my head. Then I saw him. I was 100% sure he had Down syndrome. I had never seen a baby with such strong facial features of Down syndrome. I was worried. How were we going to tell everyone? What would the girls think? What would the world think? What did I do wrong? What did we do to deserve this baby?
I realized in a very short time that it did not matter what the world thought. He was a healthy, beautiful baby boy and we got exactly what we wanted only times two. I learned that friends and family saw what we saw, and that was Ryan as a beautiful baby and not his Down syndrome.

His three year old sister could have cared less that he had Down syndrome. She made it her life mission to tell the world that she had twin brothers and that one had Down syndrome and it would never go away.

His teenage sister was harder to read. She never talked about the Down syndrome much but comforted me whenever I was sad and feeling guilty. She reminded me every day that behind those beautiful, ocean blue eyes was a baby that needed me more than ever. A baby that needed to be loved , Down syndrome or not!

To answer my own questions :

• How do we tell everyone that Ryan has Down syndrome? Proudly.
• What did I do wrong ? Nothing except think that having a child with Down syndrome was the end of the world. It is actually the beginning of a beautiful new journey of life.
• What did we do to deserve this baby? This one I cannot answer. I do not know what Jeff and I did to ever deserve someone as special as Ryan.
  It has been two wonderful years since the birth of our Baby A and Baby B. Our journey has led us to the neonatal intensive care with Kyle , and open heart surgery, bilateral tear duct probing and an adenoidectomy with Ryan. I do not know where our journey will take us in the future but I do know that it is going to be a journey filled with love, acceptance, laughter and will continue to strengthen our family bond.

As we wait to see what our future journey will bring our family, Jeff and I know one thing for sure. Unplanned journeys sometimes bring the most beautiful things to life!

Ian Raymond Francis Fergus
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 Downs 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 Downs 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 Downs Syndrome who has competed in the Special Olympics, graduated from high school with honors, or graduated from college. You see how individuals with Downs 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. Jen Fergus

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.

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 dream.

This first part was written when Veronica was 1 year old…
When I found out that I had a child with DS I was devastated. I moment I found out I wanted to jump off the hospital bed and go running and never come back. Now, whenever I go running, Veronica is my inspiration. I think of her and how I need to stay healthy so I will be around to see her experience what the world has to offer and, more importantly, what she has to offer the world. Thinking back to before she was born I realized that I was searching for something, I wasn’t sure what it was, but there was something missing in my life. I already had a beautiful son and a loving husband but I didn’t feel complete. Then Veronica came along and changed all that. She helped me find that certain something that was missing in my life - she helped find myself again. I’ve become a true believer in that all things happen for a reason. Although I still sometimes ask why this happened to me and I may never truly know, but one thing I do know is that having her has made my life more complete.

My husband says I look happier since we’ve had her. I’m wearing colors again (I used to wear a lot of black) and I’m back to practicing yoga on a regular basis. I would have never thought that I’d be happiest when I’m with a child who has DS but I actually hate being without her. I feel safe when I have her close to me. Her smile melts my heart and brightens any room she enters.
Whenever I tell someone about Veronica and how having her changed my life, from becoming certified to teach special needs yoga, and becoming an active volunteer at GiGi’s Playhouse, they are amazed at what they are hearing and all I can say is - “I have to, it’s for my daughter”

The story continues…
Now that Veronica is 2 1⁄2 years old she has changed in so many more ways. She is a walking, (almost running) talking (starting to, anyway) machine. She is potty training and getting ready to go to underwear on a full time basis. I was told not to even think about potty training her until a couple years from now. Those that told me that don’t know Veronica. She is a strong willed little princess. Her mantra for life is “On my own terms.” She is excelling in all her therapies, learning to read, thanks to the Literacy program offered at the Playhouse and has a lot of friends (her two best friends are Gigi and Kylie). She has already “graduated” from a preschool class at her therapy center to a classroom that is more challenging for her.

What is truly amazing is how much closer we have become as a family. Jake, who is 4, is her idol, she loves to be around him and he is always helping her and showing her new things. I know Jake will be a better person for having Veronica in his life. It warms my heart when I walk into the living room and see the two kids sitting at their play table and having a snack just like any other kids do.
I am still teaching yoga and have become even more involved at the Playhouse. I started a 5K Fun Run and 1 Mile Walk to help increase awareness about Down syndrome within a community of people that might not otherwise interact with those with disabilities. At the 2005 5K run a woman wrote the Playhouse and said how honored she was to have done the run and was amazed to see how much our children are like others as opposed to dislike others. She said she wears her t-shirt with pride and will never look at those with Down syndrome the same. Her eyes were opened to all the wonderful things people with Down syndrome have to offer. Even if she is the only one to have her views changed about people with Down syndrome then I have done justice for my daughter.

Veronica always has a smile and a wave hello for me and anyone who comes close to her. She is truly beautiful inside and out.

Evan
April 13. 2002, the day came to go to the hospital and deliver our second child. We thought we had our lives figured out. The American dream…the perfect family. Nothing could go wrong. When Evan was born our first thoughts were of complete joy as they told us “it’s a boy”. Moments later the room became quiet and the Dr. told us “your son has Down Syndrome”. In that one sentence our lives changed forever. Like many people in our situation our hospital stay was less than exciting. We spent the next few months searching for new dreams. Evan had heart surgery at 31/2 months and it was at that point we realized we couldn’t imagine our lives without him.

We believe God has given Evan to us and he is a gift that cannot be measured and a blessing to all who meet him. Since Evan’s birth almost 2 years ago, we have learned many things not only about life - but also about ourselves. We’ve learned the true meaning of tolerance – accepting and embracing the things society considers “different from the norm” - whether its a person with a disability, a different cultural background, or socio-economical class. We’ve learned that acceptance is the realization of a truth and the process of coming to terms with it. We have learned that every day is a step towards true acceptance - acceptance of Evan’s situation and the realization that he is going to struggle with things that other kids don’t. Acceptance that he was put into our lives for a reason and that is not the result of anything we did. We are learning the true meaning of patience and that we need to slow down and enjoy each step of life. We have learned to celebrate - different is a beautiful thing. We have learned to no longer ask why but instead why not.

We can’t deny the fact that we have had our share of challenges and frustrations, but what outweighs all the trials is the ways in which our lives have been positively impacted. Being forced to step out of our comfort zone has been the best thing that has ever happened to us.

When we look into Evan’s beautiful blue eyes we see pure happiness. We see someone who couldn’t make us happier - someone who is capable of loving beyond our imagination. Everyday Evan continues reminds us that it is ok to smell the flowers over and over again.

We can’t imagine our lives without him!
Joel and Wendy

My name is Jaime McMillion and I would like to tell you about my beautiful daughter Mackenzie Anne McMillion.
My husband and I had problems with sustaining pregnancies in the past. I lost several babies before the conception of Mackenzie. I went through months of procedures and shots to conceive this soon to be miracle baby. After a couple of months I went to my doctor’s appointment to have my ultrasound and I was told that the “ baby “ meaning Mackenzie had some abnormalities and that I needed to see a specialist.

We were told that our baby had small limbs and a kidney problem and that we should get an amino test done to see if the baby might Down syndrome. My husband and I looked at each other with total fear and denial. We kept saying to ourselves that it’s a mistake that the tests were wrong. I was put on bed rest at 5 1⁄2 months because I had high blood pressure and massive water gain. The doctors wanted me to stay off my feet and try to not to go into premature labor but I was already having contractions. I was given steroid shots to help Mackenzie’s lungs to develop. On May 14, 2003 Mackenzie was born almost 8 weeks premature, sick and helpless. We were told again for sure that Mackenzie had Down syndrome and she was very ill.

We didn’t know if she was going to be in the hospital for days, weeks even months. She was only 5 lbs, 5 oz’s and tiny. We couldn’t hold her for the first 7 days of her life. She lay on a little hospital bed in the NICU unit helpless unable to be comforted by her parents. After transfusions we were able to get her a little stronger to graduate to an isolate. Doctors, nurses and speech therapist worked with Mackenzie on her feedings. Her lungs were weak and she just couldn’t drink from a bottle without getting too tired.

I remember I was lying in the bed at the hospital and not knowing what was going on. Flowers, balloons and phone calls kept coming. I was completely upset in my own little world of denial. My parents were there trying to keep strong faces for me and James but it wasn’t getting through to me. Then I remember my father in law sat beside me and said “So what she has Down syndrome, it doesn’t mean she won’t love you or you won’t be able to love her. She is still your little girl and she needs you.” At that moment I stopped and thought about what he said. I realized at that second that I was not supposed to have tears in my eyes of unhappiness.

After 7 weeks in the NICU Mackenzie was not making real progress and I was eager to be a mom at home and not in the hospital. I asked to bring Mackenzie home and I prepared myself for all the equipment to come home with her. A couple days prior to her coming home oxygen tanks and other life saving equipment were delivered to the house. I was starting to get nervous but excited to finally become a family at home.

We took Mackenzie home in late June and things were really rough at first. The feedings, bathing, and the everyday routine changing with all the equipment attached to her every move was difficult. Unfortunately there was a problem with Mackenzie that the NICU never realized. She was vomiting uncontrollably and she was diagnosed with having pyloric stenosis. She had to have surgery in July which was very hard on her and us. The only added bonus to her surgery was while we were in the hospital for her surgery the doctor’s and nurses were able to wean Mackenzie off of her oxygen.

After that surgery was over we had to meet with her kidney doctors. They told us that she had Ureter stenosis which took four surgeries total to repair and many hours of suffering for Mackenzie. For some reason she always had that heart warming smile after everything she went through. Mackenzie has gone to the operating room at least 15 times in her two and half years of life. The scars on her body will always be with her but I’m happy the memories of what she went through will never follow. You could never tell that she had such a rough beginning on life. She is so active, playful and loving.

We still have our challenges with communication and feedings. It may be something we will experience the rest of our lives. I can’t say what the future may bring for Mackenzie all I do know is that she has touched so many people’s lives. Our families and friends have learned not be so judgmental about people with disabilities. Down syndrome sounds like such a bad thing but it’s really not. I learned so much about life since I gave birth to Mackenzie than I new about life in the 26 years before her.

I could write all day long about my daughter. Mackenzie has taught me to love life for what it is. To keep smiling that life will get better. Time will heal all wounds. I can not say enough about how determined she is to grab every second out of everyday. One extra chromosome gives her the title of having Down syndrome but I give her the title of being the most beautiful person in the world.

Annabelle
On December 7th, 2006 my life was blessed and my tiny little princess was
born. I knew in my heart she was going to be special when she was due on
Christmas Eve, my favorite day of the year. Instead of coming on Christmas
Eve she came on another significant day, Pearl Harbor Day. Whether it is
the significance of the day she was due, or the actual day she was born I
don't know, but she has filled me with more grace than I ever thought I
could have. My husband came into tell me that they saw the indications that
Annabelle had Down Syndrome. I don't know if my reaction is typical or not,
but I said, "So what?" She was my baby and I didn't care if she had Down
Syndrome, up syndrome, or what ever she might have, she was baby and I just
wanted to love her. We were blessed with Annabelle's health. It was in
pretty good shape. Although she spent her first two weeks in the hospital
gaining strength there have been no major medical complications.
Annabelle is the youngest of five children. She has 12 and 10 year
old brothers, and 8 and 7 year old sisters. Words cannot describe what she has
brought to our family. The love and joy she has given to each one of us is
truly overpowering. My husband, our children, and our whole family now feel
we have a purpose to share how awesome it is to have a child with Down
Syndrome in your family.

Annabelle has given us all strength that we never thought we had.
As she fights to keep up developmentally, we fight to make sure she gets everything she needs. We also educate people along the way, especially those who offer kind condolences about us having a child with Down Syndrome. Little do they know our dirty little secret that having a child with Down Syndrome is the greatest joy any mother could ever have. She truly has been sent here to
love us and to teach us how to love, and not a day goes by that her bright
smile doesn't melt the hearts of everyone who sees her. She has been a gift
from God for our family and for all who love and care for us.