Zach is a fighter. He wasn’t expected to make it through the pregnancy, yet he did. He is not even remotely the child that the doctors predicted he would be. He is happy, engaging and so loving. He’s always ready with a hug or snuggle. His first year was tough. He was in the hospital every couple of weeks, yet no matter how sick he was, he always had a smile for everyone. He adores his brother and sister. He loves to be with them, play with them, and be a part of anything they are doing. He’s adventurous. He’s curious. He’s fearless. (And sometimes ornery!) All of which are traits that we love, and that if given the choice, we would have chosen for him. There are so many things that are amazing about Zach, but the thing that amazes us the most about him is how alike he is to his brother and sister, and how easy it is to not see his Down syndrome at all.
When you hear those words “Your child has Down Syndrome”, the first thing that I would say is, allow yourself the time you need to grieve. Let yourself be angry. Let yourself be sad. Know that those feelings don’t make you a horrible parent. They only make you human. They are normal and they need to be worked through in your own time, and your own way. Somewhere along the way, those feelings are going to change, and when you look at your child, you are going to be able to feel joy and pride and happiness when you see them. Then when you are ready, reach out for help. Find a support group or someone else who has a child with Down syndrome and talk to them. Ask them the questions that you want answers to. Learn about Down syndrome personally instead of just statistically and medically. Having someone that you can talk to, who has walked the same road as you, is priceless.
My name is Marialyn Kusner. I am a mother of three beautiful children, two boys, Robert age 10 and Jonathan age 9 and last my daughter Olivia age 2. My husband Robert and I struggled with infertility for 8 years before finally becoming pregnant on our own. 6 months after Robert was born I found myself pregnant again on our own. Thinking our family was complete and blessed with two healthy sons never did I think that at age 42 would be pregnant again. Scared because of my age and also didn't realize I was pregnant until I was almost 8 weeks after the shock wore off, I was excited. At my 13 week ultrasound the doctor told us that the baby had a cystic hygroma on the neck which could be an indication of a genetic disorder. Of course sent us to a genetic counselor to discuss our options, one of aborting the pregnancy and another of an amniocentesis to tell us definitely what we were dealing with. Because of my age, risk to me and the baby, and what I say often "she could be a monkey and I'm keeping her", we decided to let God guide us through this journey. Journey it was. Ultrasounds, specialist appointments, trips to a hospital an hour away where I would have to deliver because of a possible heart defect she might need repaired right at birth we took it a day at a time. Born at 31 weeks, weighing 3lbs 2 oz, 14 inches long, she was perfect. Only needed a cpap to help her breathe for the first 6 hours, Olivia started as a fighter. No other issues, other than learning to eat, we spent to first 9 weeks in the NICU between two hospitals. It was a challenge, with having two boys at home and in school , but we had a fabulous support system of family and friends to help us through.
Today, almost 3 years later, it all feels like a blur. Olivia is a crazy, trouble making, opinionated, smart, funny and beautiful toddler. She is more active than her brothers ever were and keeps me on my toes every minute. Her brothers love her and thank me for giving them a baby sister. Early intervention services started as soon as she came home from the hospital and I believe have made a huge difference in her. We have two wonderful support groups that have activities for the children and siblings, parent events that we enjoy going to and spending time with other families helping us learn what else we can do to help Olivia reach her full potential. Our families are above all our strength that helped us get though the rough times and unconditionally love our little angel. Olivia draws attention no matter where we go. She is very social and gets your attention even if you aren't looking she will yell "hi" until you acknowledge her. I don't know what my life would be like without her. I guess pretty boring! Olivia is a true blessing and miracle from God
Our Finnegan has such a tender, sweet heart. He takes in everything around him with such a zest for every moment. I think one of our favorite things about Finnegan is when we watch him play; he smiles and laughs without prompting, just enjoying himself so much in the moment. He has a purity about him and a certain wisdom in his eyes. He loves with his whole heart, full force, completely and tirelessly. He has, hands down, the best sense of humor. And he wakes, everyday, with a smile that can light up any room. Finnegan is our angel right here on Earth.
Some advice we would lend would be to remember that a baby with DS needs what other babies need: love, security, affection, and patience. Just as with neuro-typical babies, milestones are not tied to a hard timeline and your baby will thrive with your understanding, support, and encouragement. Yes, this may be all new to you. Yes, it may feel overwhelming. Yes, you may not feel like you're up to the challenge. Let us just say: you can do this. Your child will develop their own personality, as any child would, and you will watch, in awe, at their perseverance and determination to make you proud. They will make your hearts overflow with love for them. They will be your greatest gift in life.
There is so much about Aiden that has brought our family joy and it's hard to put it into words. His smile alone is enough to melt your heart. The constant love that he shows us is beyond words. Watching him achieve each milestone is amazing knowing that he has to work harder to get there. We are so proud of him each and every time, but you can tell by his face that he is just as proud of himself, even more proud than we are! He has brought our family and friends even closer just by being him and he has made all of us better people, more aware, more accepting. We couldn't imagine life without him!
That being said, these feelings didn't come with the snap of a finger. The initial diagnosis for us was shocking. You never think anything other than the "typical" will be placed before you. It is devastating and sad, then you feel bad for being devastated when you see your precious baby in front of you, whether in your arms or on an ultrasound. Coming from where we were to where we are today took time, a lot of tears, tons of hugs, and so much love and support from our family, our friends, and most of all strangers that we have never met whose stories, like ours now, taught us so much. It is okay to have all sorts of feelings and emotions, it is okay to feel like you don't want to go on, that this isn't fair, why is this happening to you. We felt that way too. But we can tell you from the other side that it will all get better, it will all be great, greater than you ever imagined! Don't give up on yourself! Don't give up on your child! He or she will be more to you than you have ever even imagined!
Kennedy is so much more than a diagnosis. She’s Kennedy Lillian Schoell before she is anything else. Kennedy has Down syndrome but she is also a girl who has dreams, goals, love, joy and ambition like either of my other two children. Kennedy’s happiness in life is so admirable. From the second she opens her eyes to the minute she closes them, she brings nothing but joy to everyone she meets. She can make a bad day better. Kennedy has physical therapy twice a month and a special instructor once a week. It is unbelievable how driven she is. She never cries, whines or fusses during her therapies. It’s almost as if she knows that they are there to help her reach her milestones and goals. Even though Kennedy will hit her milestones when she is ready, she still comes to therapy with determination and a smile. I love all three of my kids, they each carry a different amount of happiness in my heart but there’s something about Kennedy’s willpower that makes her different. Since Kennedy has been born, my entire family has never seen a bad day and we have Kennedy’s joy and love to thank for that.
There are so many things I could tell a new parent on how to deal with the news that they have just received, but truthfully, everyone deals with emotions differently. I dealt with my emotions by crying. To say I wasn’t devastated would be a lie. In a blink of an eye, a day that was supposed to be celebrated was filled with tears and worry. I thought our lives forever changed due to lack of education we were given. No one was congratulating us on the birth of our beautiful little girl. Instead they told us everything that Kennedy wasn’t going to do (i.e.: walking, talking, heart defects, health complications). They weren’t seeing Kennedy AS Kennedy. Little did I know that our lives were not only changing, but would forever be joyful as well. Kennedy can do everything we always talked about, in the nine months that I was pregnant. She’s just going to do it in “Kennedy’s time”. I would tell those new parents to stay off Google and WebMD, and look for better sites like the NDSS. Watch our video and check out Facebook support group pages to link up with other parents. There is an organization called Parent to Parent that matches up families with special needs children to one another. I was connected with three different moms that way. I started a group on Facebook called Keeping up with Kennedy, and have been able to connect with parents who have reached out to me through that page. There is no better feeling then helping a mom out and giving her advice. There are two things that I tell everyone who just found out about their child’s diagnosis-
1. There is nothing “down” about Down syndrome.
2. Congratulations! The journey that you are about to embark on is by far the best one.
I never thought I would be a mom to a child with special needs, let alone be the fortunate one to be a mother to a child with Down syndrome.
New parents, congratulations. You, my new friend, are in for a wonderful voyage with a ton of smiles, laughter and love.
A little over a year ago, we were blessed with our daughter Raegan. She is the most loving baby, sweet, funny and affectionate. Her strong will and sweet spirit is a combination that’s hard to ignore. Her teenage siblings, Gabe and Mackenzie, absolutely adore their little sister and melt when she smiles. Although our baby has had some health issues that has never kept her down. When Raegan required open-heart surgery at 3 months of age, our sweet miracle woke up from the anesthesia, opened her eyes, and immediately smiled up at us. That is our girl. She is our little ray of sunshine. It is practically impossible to have a bad day with her in our lives. To wake up to her smile every morning, and to live amongst her laughter, is such a beautiful blessing from God.
I wasn't so sure what life would hold for us upon hearing the Down syndrome diagnosis when I was only 12 weeks pregnant. Our lives were forever changed from that short phone call. Those first few hours were heart wrenching. My heart felt as if it had shattered into a million pieces. What did this mean for us, our family, our marriage? What would I tell people? Was this something we caused? Not knowing much about Down syndrome, I quickly imagined the worst-case scenario of just about every stereotype that exists with DS. It wasn't until the next day that my husband called me downstairs after a day of research. He sat me down and proceeded to show me 2 hours worth of uploaded videos, showing all of the amazing accomplishments that kids with Down syndrome can achieve, and do! Kids were in full inclusion school classrooms. They were going to prom, playing on the football team, going to college, working jobs and getting married! Every parent said that it was going be okay. Every single one. And slowly, we started to believe them. It truly didn't take long for us, after that. Every day got a little easier until before long, we were more excited than ever for our sweet little girl to come. My best advice is to be patient with your emotions. It isn't easy. But in time, you will look back on those early days and wish that you didn't shed one tear... for the gift that you have just been given will be the most beautiful blessing you can ever imagine.
On November 9, 2014, we were blessed with the birth of our son Robert Morris McGuire, affectionately known as Robby. Approximately 14 weeks into our pregnancy, we learned that Robby has Trisomy 21, also known as Down Syndrome. Our initial reaction was shock, followed by the immediate desire to protect and love our unborn child. Within a few hours of receiving the diagnosis, we thought the most important thing was to name our little miracle. We chose to name our son Robert after his daddy and use his mommy’s maiden name Morris as his middle name to symbolize he was part of us both. We wanted our son and the world to know that we were proud to be his parents and that he was 100% part of us. The first few days after receiving his diagnosis, we scoured the internet for information, made phone calls to Down syndrome organizations, called the State of New Jersey to discuss early intervention, spoke to families touched by Down syndrome, all to educate ourselves on what life was going to be like for Robby and our new family. We will admit, it sounded scary! There were so many “he may have this, he may have that”. It was overwhelming. Like any parent does, when planning to have a family, we had created these dreams and hopes for our unborn child. They would play sports, spend summers on the beach, do well in school, have a high school sweetheart, have lots of friends, go to college, travel, have a rewarding career, fall in love, and get married, have children, etc. After receiving Robby’s diagnosis our dreams were temporarily changed. When you research Down Syndrome you read low tone, so sports are a no-no, go to the beach, umm no he will be tactile defensive, he will be delayed so don’t expect to do well in school, etc. Suddenly, we realized that not only what we were reading was a bunch of maybe this, maybe that, nothing was concrete, nor was our dreams and hopes for our child. See, we were not realistic! No one can predict what our child will do or not do in life. It’s okay to have dreams and hopes for them, but remember, they determine their destiny. As parents we are to nurture, love, and protect them, provide food, shelter, medical care and faith, encourage them, guide them, etc.
It turned out our Robby is everything we expected…. He is cute and adorable, extremely loving, unbelievably cuddly, sweet, and playful. He has eyes that are as breathtaking as the ocean and a smile that is so contagious, it lights up the room! He makes us so proud to be his parents. Every time he meets a milestone it’s a celebration. He loves to spend time with us, sit with us and read books, play drums, reach for our electronics, play with blocks, and so much more. We can’t imagine life without him.
To any parent receiving the Down syndrome diagnosis for their child, I encourage you to stop and breathe……and it’s okay to cry. You may feel your dreams and hopes for your child have been dashed, but please know it’s not true. Take a moment and enjoy the fact that you have been blessed to be this little person’s mommy and/or daddy. In fact, boast to the whole world you are blessed. Take everything one day at a time, and in the end we are certain you will find immense love for your child and feel blessed for everything your little angel will bring into your lives.
My son Michael is 2 years old and is the best thing that has ever happened to me and my family. From the moment he wakes up to the moment he goes to bed at night, he has a constant smile on his face. He loves Mickey Mouse and loves to dance and play ball! Every time he hears music he dances. Even in his car seat, in the car, he's constantly moving to whatever comes on the radio!
My advice to other parents that are pregnant with a child with DS, or who find out after their child is born, is to just take one day at a time! Do not look ahead because if you do you will make yourself worry! I have learned from hearing other people's stories that all of our children are different! Everything that my son does amazes me just like everything my daughters, who do not have a disability, do amaze me- Michael is just behind in all that he does! I always have faith, and getting to know other families is so amazing and so comforting that it keeps us going in our journey with Michael!
Carly Faith, my youngest daughter, is an amazing six year old with lots of sass and spunk. She is a blessing so great that we couldn't possibly summarize it in a paragraph. When Carly was first born, our family mourned the loss of “the normal child” we were planning on, however we quickly realized that Carly was exactly the normal that we needed. She lights up a room, has a contagious smile, and amazes everyone around her day in and day out. Carly teaches us all to be more compassionate and more inspired. She never gives up, always tries her best and is determined to keep learning new things. Carly is strong, curious, smart, sassy, funny ...and a little stubborn at times. Carly has been in dance recitals, gymnastics shows, has play dates with friends, and joined a soccer team. She recently started kindergarten in an Inclusion class and is beginning to read. She continues to shatter the “normal” ceilings put in place and has far exceeded our expectations. Our family along with Carly’s teachers, coaches and caregivers all can give a little extra to her in part because of the resources and networks available to parents, like us, who band together and support each other. We couldn't imagine our family without her.
The initial diagnosis took my breath away. It was all quite overwhelming. I remember questioning "what do we do next?" Then felt heartbroken and angry at myself for feeling that way. Soon it became clear that it was okay to simply not know how to feel. My advice would be to find support. Reach out to other families with a child that has Down syndrome. Share your feelings, ask questions, be honest with yourself. It's amazing how much better you will feel after hearing amazing stories of strength, love, and happiness. After you have support, find resources. Connect with Early Intervention to get your child involved in any therapies as soon as possible. Explore local support groups in your area to get information and participate in local events. Once you've identified support and resources, let people help you. It's a humbling experience, but ultimately, it's amazing to know you're not alone. Finally, and most importantly, just love your child. Stay positive in front of them, take it one day at a time, don’t compare them to others, don’t treat them differently, and enjoy single moment, every single day. Prepare your family for immeasurable joy, love, and happiness both from your child and the community of people who will love them too.
On March 22, 2010 our beautiful daughter Alexa Cupitt was born. Blonde-haired, blue-eyed, and peaceful as could be, our boys were thrilled to have a new baby sister! As quick as this new joy came upon us, our world was turned upside-down later that evening. We were informed that not only did she have Down syndrome, but she also had a significant heart murmur. Today, Alexa is stronger than ever. She has had three open-heart surgeries and two cardiac catheterizations. She is full of energy, running around with her brothers like any other five year-old. We admire her for her strength and her determination.
She doesn’t listen to what she can’t do and she makes everything seem possible. Her smile alone is one that brings you joy in an instant. We continue to be amazed at what she has overcome and how she has beaten such great odds. No one looks at her and sees Down syndrome. They look at her as a beautiful little girl who is ready to take on the world.
The advice we would give to parents dealing with this diagnosis is to take a moment to simply look at the joy in the eyes of children with Down syndrome. Research will give you a great deal of information, which can be quite overwhelming. It’s okay to ask questions and to ask for help. Just know that your child will bring you such great joy. It may seem as though your life will forever be changed. This is true and it will change, but for the better. The love that our Alexa has for life is wonderful to see. We can’t imagine what our lives would be like without her.
Meet Tristan David Garcia, born on September 7th, 2013. Tristan has rocked our world in ways we never knew were possible! Tristan is intelligent, persistent, strong willed, and knows what he wants. He loves to eat and dance! He also is very healthy and capable of anything he sets his mind to. He never gives up and he is fearless. His favorite person is his 5 year old brother, Jael, who is his protector, playmate, and best friend. The love between the two of them is the most beautiful and special love that I have ever seen. He is loved by so many people, and he has brought our family closer. He lights up a room with his smile, and turns bad moments into happy moments without even trying. Tristan is a blessing, and we feel honored and privileged to raise him.
To the parent of a new baby with Down syndrome: You can do this. You were chosen out of 1,000 people to raise one of God's special ones, and it's exactly what was meant to be. Although you may be wondering why this happened to you, you are far from unlucky. You are blessed. Please know that whatever you are feeling right now is normal, and it's not going to last forever. Right now, you are mourning the loss of the "typical" child you thought you were going to have, and it's ok to cry and be honest. Thousands of parents have felt exactly what you are feeling. The fear, confusion, and sadness will disappear very soon. Those feelings will soon be replaced with joy, happiness, and a fierce unconditional love that you already have for your child. You don't have to force these feelings...your child will bring them out of you. Your child will change your family, strengthen your faith, make you a better person, and will show you a love that you never knew existed. Don't listen to the world around you, or the people who say, "I'm so sorry" and tell you all of the negative things about Down syndrome. They say those things because they only see Down syndrome from the outside. The truth is, your child will have an amazing life full of love. It may be challenging at times, and it may require some extra support, energy, or time, but God will not give you more than you can handle. Your child can be healthy. Your child will walk, talk, communicate his feelings, hug you, tell you he loves you, laugh, cry, misbehave, and have the same experiences as a typical child. Your child will have qualities that you wish you could have, and qualities that this world desperately needs. You are part of a community of families now, and you will soon realize that they are some of the most amazing people you will ever meet. Congratulations...you are about to embark on the most amazing journey of your life!