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.

Before I gave birth to my son Charlie, I truly believed I was one of those people who “bad” or difficult things just would not happen to. I didn’t think I could handle it. I never saw myself as one of those people who were strong or courageous in the face of challenges. I was wimpy and weak. I skipped the section of c-sections and other difficulties in my pregnancy books, because I didn’t even think I could deal with that. I shook my head and shuddered every time I heard of someone’s difficulty pregnancy or birth. Not me, I thought, not tough enough.

And then on May 10, 2005 everything I thought about myself and my world changed. After an unremarkable pregnancy, I had a relatively pain free, quick and easy birth. And then I saw Charlie, eyes closed, wild hair. Sweet, but quiet. Too quiet. Nurses and doctors seemed slightly concerned, but still calm. They brought in a pediatrician to check him. I remember watching from my bed as she carefully looked him. Then she took a deep breath, turned to us and slowly said, “I think we need to consider the possibility that your son has Down syndrome.” She went to explain more, but I wasn’t really listening. I was too shocked to cry, to do anything but think, no this can’t be. I look at my husband Jim, watching his eyes fill with tears, but he nodded his head as if to say, “This is okay. We can do this.”

And I thought there is no way. I can’t do this. Not me. We brought him home, waiting for the results of his chromosome test, unsure of what to say to others, what to tell myself, what to do next, as I thought my dream of a normal, happy life was over. He was so sweet, so patient with us. Through the tears, the anger, the sadness, the what –ifs, he gave me love and seemed to be telling me, “You are going to be okay. I’m already okay.”
The two men in my life were right. I was okay. It took awhile to get there, but the love and lessons Charlie has already taught me have changed me for the better. I know now I am tough. I am strong. Charlie opened my eyes to a whole other world, full of some of the kindest, gentlest souls I would ever want to meet. Charlie showed me the depths of love and caring that I didn’t know existed in people I had known for years .He spreads his message of love and acceptance to everyone. As my friend/daycare provider told me, “Taking Charlie out is like going out with a celebrity.” And she’s right. People stop, not to stare, like I worried about once, but to smile, to wave, to remark on his cuteness or good natured personality. Children flock to him calling him by his nickname of Char-Char, and do all but stand on their head to keep him entertained and happy.

I know Charlie has changed people’s mind about a child with Down syndrome can do. He works hard in therapy, and it is a struggle sometimes to see him frustrated. But when he learns something new, he is so proud, and so are we. I know my life now is not the one I dreamed of or wished for, but it is so good and true, I can’t imagine it any other way. In my job, I am the teacher, but in my own life, Charlie is the teacher. He challenges limitations, questions and makes me think about life in a new way in the short time has been ours. I am truly blessed, lucky and so glad to be the mother of Charlie.

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!

I wish that I could say my daughter was the first person with Down Syndrome I ever met.

That wouldn’t be true, though. My sister started working with adults with developmental disabilities when I was a teenager, and I had met (though not known) quite a few people with Down Syndrome. And while I was polite to all of them, I didn’t pay much attention to them because I thought of them as my sister’s job and nothing more. When we learned our newborn had Down Syndrome, my mind was filled with images of all those people I met during those summers, many of whom had spent their lives in institutions and grew up in an era before early intervention existed. I was terrified to imagine my daughter—who I dreamt would earn the PhD her dad and I never had time to—coming up to strangers and trying to kiss them.

My sister, who now works with children with developmental disabilities, helped us realize that much has changed since I was a teenager, and that many people with Down Syndrome are living full and productive lives. She helped us cut through the fear-induced fog, and start making plans for Eve to get ongoing therapies to help her do almost everything we imagined she would before we learned she had Down Syndrome. While there have certainly been bumps in the road—a surprise case of pneumonia last year with a week-long hospital stay—we have had a surprisingly smooth journey so far. Eve’s determination to walk, talk, and do all the other things ‘typical’ two-year olds do has been nothing short of inspiring. She has made our lives much easier than we thought they would be, and taught us, as well as my parents and grandparents, countless lessons about patience and the importance of accepting each person for what they have to offer.

Nolan Sean
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.

My name is Inez Hefferan and 2 1⁄2 years ago I became pregnant at the age of 39. The doctor asked me if I wanted to have an amino and I said there was no reason. I told him that no matter what this was my baby. The doctors told me there was an ultrasound that could also help determine if there were any genetic things wrong with the baby. I agreed to have one. As it turns out I had a lot of them. They told me I was having a little girl but that she was not growing the way she should. They were instantly worried and we began trying figure out what was going on. At the next ultrasound her weight had caught up and she was “normal” again. However she did have club feet. Since my son was born with club feet I didn’t even worry about this because I knew how to take care of that. In the end they could not tell us whether she had Down syndrome or not. They could only say with certainty that she had club feet. On June 15th we headed into the hospital. My contractions were 10 minutes apart and I was doing ok but my other kids had come quickly so I wanted to be in the hospital. When I got there I was fully dilated and the baby was ready to come out. Hannah was delivered minutes after the doctor arrived. And just to show her individuality my little Hannah was born feet first!

They placed her in my arms and she was the one of the most beautiful things I had ever seen. My husband and I commented on how she stuck her tongue out at us and thought that was so cute. They took her into the other room to clean her up. At least that is what I thought. The doctor checked her out in the other room and came back 15 minutes later to tell us they thought she had Down syndrome. They said the tests would take 7 full days. Our world was turned upside down! We called our families and told them about the baby and our news. All the nurses said oh don’t worry she doesn’t look like she has it. I knew in my heart she did and I didn’t care. I just wanted to make sure she was healthy and take her home. When the results came back I was by myself. I cried for fear of what my baby would have to go through. I cried out of fear for her health. I cried out of fear of what others would think.

Our families were very supportive but they didn’t know what to expect. Our support family came over they gave us a lot of information. They told us about Gigi’s. A friend from work and a friend from Florida both told me about Gigi’s also. I decided to send an email into the site. The same day I received an e-mail from Nancy. I remember crying because she was the first person to congratulate me after knowing my daughter had Down syndrome. I went into the playhouse to visit open play when Hannah was just weeks old. I was greeted as if everyone there had known me all my life. It was as if I had found a long last family. I still cry when I think of that day. That day many of my fears were washed away. I saw children running, laughing, reading and just being kids. I had brought my older children with and it was a good thing for them to see also.

We know we have our challenges but Hannah is healthy and we have a great support system. Now my children write reports in school about Down syndrome. John my 11 year old explains to the kids in his class that Hannah has an extra chromosome and why she sticks her tongue out. As co-athletic directors at my sons’ school we have people ask about Hannah all the time. Does she walk yet, is she talking yet. We say no but she will be soon, she is just a little behind because she has Down syndrome. My 15 year old daughter invites friends to come to the two and under play group to help with the kids. We are currently trying to organize a group from my daughter’s high school to come in and help with the literacy program. This past year with Nancy’s help we were able to bring the awareness of Down syndrome to over 200 people at Allstate as she gave presentations to them. After that we had a few people reach out to us for more information because they had a family member with Down syndrome.

Hannah has taught us all to appreciate the little things in life and not to take anything for granted. She has taught us to dance to every song and to congratulate each other when we do. She has taught us to be advocates for her and to help others overcome their fears. When we look at Hannah we don’t see Down syndrome, just our wonderful baby girl. She will help educate everyone

In our world, the sun and moon rise and set to our son, Max. In the fifteen months since he was born, Max has enriched our lives and that of our families and friends. It’s amazing to think back to when we received our prenatal diagnosis of Down syndrome. It was a time of great uncertainty and yes, worries.

We experienced conflicting reactions from people. Some doctors insisted that our lives would be forever changed… for the worse! Many people also told us that children with Down syndrome are perfect angels. It was hard to know which one would come true. What we have discovered is that neither is exactly true. Although Max is an “angel” in the calendar, Max is every bit a little boy with a mischievous streak a mile long. He loves to bang and dump anything he can get his hands on. As quick as a flash, he can snatch your glasses from your face (just ask his mommy, Sarah)!

Max is a sweet little boy. He loves giving his friends and family big kisses. You’ll know when you got a good one – he’ll scream right after he lays one on you. We’ve also noticed that people are naturally drawn to Max. Many times, people are left smiling or giggling. We don’t know how he does it, but he touches everyone’s heart in a positive way.

Max is a tough little boy. He has fought through some difficult times with the will and strength of ten men. His strength and persistence amazes us every day. He is a true inspiration.

Most importantly, Max is our son. As it turns out, Down syndrome is just one piece of who Max is. Like any parent, we love each and every part of him and wouldn’t change a thing. He shows us the love and affection of which every parent dreams…and for what more could anyone ask?

I’ve been asked to explain how my son Jack has changed my life. He hasn’t. Jack’s effect on my life is ongoing. Watching him grow changes me every day. One day in particular was so rewarding…

Jack was about two. Despite all of his speech therapy, Jack was totally nonverbal. My wife and I were trying with sign language, but unless we were modeling, Jack was largely non-receptive and never spontaneous in communication. One evening while Jack was playing quietly in his playroom, Mom and I had settled on the couch for a winter’s night of TV watching. After some time, Jack toddled out to me and began playfully tugging on my blanket. I tugged back and said to no one in particular “You’re not getting my blanket unless you get my socks first.” Jack gave up and went back to his playroom. I went back to watching TV. About five minutes later, Jack came waddling back. Gripped in his little hands was a pair of his socks. He had grabbed them from the basket in his playroom. He proudly handed them to me. As my eyes teared up, I gladly made the promised trade. Jack was listening. He was understanding. And Jack had just made my life a little bit better—again.

I’ll never forget two life changing phone calls I received from my sister, Julie, in the past 5 years. The first call was to tell me that she was pregnant with a little girl who has Down syndrome. My first reaction was concern and worry-for my sister and her husband, their son, and for this little girl and what quality of life she would have. You see, my entire family was completely ignorant about Down syndrome. This was something that we were all aware of, but not something we ever gave much thought to, until that phone call. I really should not have worried one bit, because knowing my sister I knew that Jenna would receive the love, support and encouragement that she would need to begin her life. She entered our lives at the exact moment we needed her to. Our mother was dying from cancer when Jenna was born and she became the light in our very dark world. She was a happy and sweet baby and gave us all the much needed distraction so we could focus on the living and not the passing of our mother.

Phone call number two came this past January and stopped my heart when our Jenna was diagnosed with Leukemia. I knew from Julie that kids with Down syndrome were at a higher risk for Leukemia but never thought it would happen to Jenna as she has been such a healthy little girl. Again, worry consumed me, for all of the exact same reasons the first call brought. But this time, I am not as ignorant because I have had this little gem in my life for four years now. I have a better understanding of what Down syndrome is and looks like and I know what kind of life Jenna will have. She will be strong, get well and conquer this illness. Jenna is beautiful, sweet, and smart and has a great disposition. She is handling Leukemia far better than any of us would-without complaint and without fear. Jenna will teach all of those in her life what it means to persevere and win! She will always be the very bright light in my world.

Jackie
Jenna’s Aunt

Our daughter Kira was born January 23, 2006. After 2 1⁄2 hours of labor, we held our new baby girl weighing 8lbs 1 oz. She was eager to come and has been eager to learn and grow ever since. Kira was born with Down Syndrome which for us has meant that life would hold new challenges and journeys. Her diagnosis was a shock to us, but nothing could change the pride, joy and love we felt for our baby girl. From the moment of birth we couldn’t have felt more blessed. In a word, Kira is Amazing. She is already a strong, determined and stubborn little lady who never ceases to astound us. At 8 months old, she had a cardiac catheterization procedure to fix two holes in her heart – 6 hours later, she was standing up (with help from Grandpa), smiling, and yanking the monitor leads off her chest. You would never have known that she had just had a heart procedure. Kira always has a smile for her loved ones, a smile that lights up her whole face and makes you forget about everything else. She is not shy about letting you know when she's unhappy or when she's hungry – in fact you can't do anything else until you address that concern. Kira has made our family stronger and happier. John(Daddy), Lucas(Big Brother) and I, as well as her grandparents, aunts, uncles and cousins all love her dearly and are grateful that she has entered our lives.

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.

'Welcome to Holland'
I am often asked to describe the experience of raising a child with a disability-to try to help people whom have not shared that unique experience to understand it, imagine how it would feel. It's like this: When you're going to have a baby-it's like planning a fabulous vacation trip- to Italy. You buy a bunch of guidebooks and make wonderful plans. The Coliseum, The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!" you say. " What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy" But there's been a change in the flight plan. They've landed in Holland and there you musy stay. The important thing is that they haven't taken you to a horrible, disgusting filthy place, full of pestilence, famine, and disease. It's just a different place. So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there a while and you catch your breath, you look around, and you begin to notice that Holland has windmills. Holland has tulips. Holland has Rembrandts. But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And the rest of your life, you say, "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever go away because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Sarah is our first child. I can still remember the absolute amazement, joy and complete excitement when we learned we were expecting. I can also remember the absolute fear, sadness and uncertainty upon learning that our baby would have Down syndrome (“DS”) and need open heart surgery. However, I truly believe that I was meant to know of her diagnosis so I could one day help other moms with theirs. The night before my 18 week appointment, I was reading the “What To Expect When You’re Expecting” book that we all do, and it talked about the triple screen blood test to screen for DS and spina bifida. The next day, I had my exam and my OB was leaving the room, I stopped her and said “what about the triple screen”? She replied that they only recommend that on women over 35 and I was only 31 years old so it was not needed. I told her that I would like to have it anyway. Well, little did I expect a phone call a week later indicating I was at high risk for having a baby with DS. We decided to have an amnio to confirm the blood test, and that, of course, was positive. We found out on a Thursday evening-I will never forget the moment. We spent a weekend in agony-will we ever be able to vacation again, will she survive, we’ll never be able to get a babysitter and have a date, and on and on. Then, on Monday, I was on the phone with NADS getting all the information I could to educate myself. A week later, a level 2 ultrasound indicated she had AV Canal and would require open heart surgery at about 12 weeks of age. I would like to tell you that acceptance was easy, but it was not, It was painful and hard. However, when playing the “why me” card, I had a wise friend say, “Why not you? God knew that your marriage was strong enough to survive this, your faith strong enough not to abort the baby and your friends and family strong enough to support you in every way.” I will never, ever forget those words. I never looked back after that! Sarah’s birth was the most joyous occasion I could ever have imagined. We had been told to expect her to come out blue and be whisked away from us, to prepare not even to hold her. Well, no way was she going to live down to this expectation. She came out pink, screaming and yelling. We held her forever and took a million pictures and she sucked down her first bottle like no one could believe. She has been going strong ever since.

After my experience, I decided to become a Parent Liason for NADS and I helped other women with their in utero diagnosis. I remember telling them that though they don’t believe it now, they will one day say and believe, “Oh, it’s only Down syndrome” and I can say with complete honesty, that that is what I think every day. Sarah is a blessing I could never have imagined and I can’t imagine my life without her. The amazing journey we are on was and is worth every ounce of pain we felt when we got our diagnosis and just didn’t know that it truly is “only Down syndrome”. To all of you reading this, I ask you to just “believe”.

Sincerely,Lora
Sarah’s Proud Mom

The day that Teagan Isabelle was born was a very memorable day in our lives. Upon hearing the news, at first, we were devastated and in a very dark place. We were completely shocked and had no idea what was to come. All that kept running through our minds was “how did this happen to us?” Teagan was whisked away and put through all sorts of tests. My Mother and Sister were in the delivery room with us – for which we were so grateful – we were all stunned.

The day changed when my Father arrived a few hours later. He simply held Teagan and said “This is not a funeral – she is a blessing.” That is when everything changed for us and we started to look at her like our baby and not someone that we did not recognize.

Everyday got easier and each day we fell more in love with Teagan. Our family and friends rallied around us and love her so much. Her sister Aine welcomed her home with such excitement - always proclaiming – “this is my baby sister!” They have a very special bond and Teagan recognized Aine’s voice the first time she heard it.

Today, Teagan is a very happy and healthy 18 month old. She is doing really well and surprises us everyday. We know that it has been said a thousand times but loving Teagan is like nothing else we have felt before. She draws people in and once you are in, it is for good. We have met so many nice families and because of Teagan, we have edified our friends and family about Down Syndrome – it is a community filled with love and hope!

If only we knew then what we know now. We cannot imagine life without her!