This month marks Down Syndrome Awareness Month and today we wanted to share our friend Stefanie’s story. Mom of four, Stefanie is on a mission that a Down syndrome diagnosis is nothing to fear!
“Liam’s diagnosis made us all better human beings, and we will work tirelessly to make this world more accepting of him.” -Stefanie
Tell us about your family.
Hi! I’m Stefanie. My husband, Grant, and I met 16 years ago when we were cast as Adam and Eve in a musical. We like to joke that we met in the Garden of Eden! We fell in love and married a year and a half after we met. We were very young, so we enjoyed 4-years of marriage before welcoming our children into our family. Dylan is 10, Alexandria is 8, Liliana is 4, and Liam is 2. We lovingly refer to Dylan and Lexie as Phase One and Lily and Liam as Phase Two. My husband is hoping there won’t be a Phase Three, although I’m currently trying to convince him that we should adopt! My life is full of love and chaos and I wouldn’t change a single thing!
Your youngest, Liam, has Down syndrome. Tell us a little about Liam’s personality.
Liam is a beautiful boy, inside and out. He radiates joy, love, and innocence. He is happy 99% of the time and has the most contagious smile. When Liam smiles, it’s impossible not to smile back! Wherever we go, he manages to captivate people. He is happy, bubbly, and incredibly sweet. He loves with all his might and lives life to the fullest. Most of all, he is a little boy, just like any other. He acts so much like a “typical” kid that I often forget he has Down syndrome.
How did you find out that he had Down syndrome?
We had a birth diagnosis with Liam. During the ultrasounds, we were told that our baby was “textbook” perfect. We never, in a million years, expected anything different. We never thought it could happen to us.
What was your initial reaction?
I’m going to be brutally honest. When my eyes met Liam’s for the first time, I KNEW he had Down syndrome. My heart sank and I had to choke back tears. When the doctor sat down and told us what he suspected, it felt like life as we knew it was over. We knew nothing about Down syndrome, and at the time, it felt like a prison sentence. What was supposed to be one of the happiest days of our lives turned into a grieving period. I experienced thoughts and emotions that I’m not proud of.
The truth is, you have to grieve the loss of the child you expected before you can embrace the child you were given.
Every emotion and thought I had at the time was NORMAL. Thankfully, it only took a few hours to recover from the shock, and fall in love with our sweet boy! I can’t remember looking into Dylan, Lexie, or Lily’s eyes for the first time, but the moment when Liam’s eyes met mine is still so vivid that it feels like it just happened yesterday. At that moment, all I could feel was shock and sadness, but now, all I can see is the beauty.
Had you done any prenatal testing for Down syndrome during your pregnancy?
I had a basic blood test and several ultrasounds. Everything was perfectly normal. During all our pregnancies, we opted to skip the blood test and ultrasound that screens for Down syndrome in the first trimester, because the results wouldn’t have changed anything. We firmly believe in taking what God hands us. That being said, it was still a punch in the gut to hear the news, especially after being told that everything was normal. Our chances of having a child with Down syndrome was 1 in 781. We weren’t the least bit worried after hearing those odds. At the time, I was in my early thirties. I was healthy and active. I didn’t drink and I didn’t smoke. I ate a healthy diet. I took prenatal vitamins before conceiving. I did EVERYTHING right. The mother is often unfairly blamed when they give birth to a child with Down syndrome. The reality is that Liam’s Down syndrome was just chance. It happened to me, and it could happen to anyone.
Tell us about Liam’s first year. What were the biggest joys, hardships, and surprises?
Despite having Down syndrome, Liam was perfectly healthy. His only struggle was gaining weight. When Liam was born, he weighed 7 lbs 11 oz. At 1-month-old, he weighed 5 lbs 14 oz. At 2-months-old, he was still under birth weight, so he was hospitalized for a few days to find out why. The doctors ran multiple tests, including one that was performed in the OR under anesthesia. It was a very scary time, but everything came back normal. It didn’t take long to realize that he was just gaining slowly. He didn’t reach 10 lbs until he was 6 months old. Even today, at just over 2-years-old, he only weighs 22 lbs. Liam is very small, but we are so thankful for his excellent health. He doesn’t have any of the common health issues that are often present with Down syndrome and he managed to meet all of his milestones before he turned 2. I was most surprised at how “typical” Liam seemed and how “normal” life was. We expected a year full of hardships, but instead, our days were filled with joy and we fell more in love with Liam with each day that passed.
How has your life, and your children/family’s life changed since welcoming Liam?
I tell everyone that Liam made our lives better. His birth diagnosis strengthened our relationships with others, opened our eyes to a world we never knew, and brought some amazing people into our lives. My older children were always so kind and loving, but it’s more evident now. Ability or race isn’t even a factor in their thinking, and they truly love and accept everyone around them. When Liam was 6-weeks-old, we attended a Down syndrome fundraising event. It was the first time my children were around others who had Down syndrome. As we were leaving, I asked if they noticed all the people who had Down syndrome. Without missing a beat, my then 6-year-old said, “No. All I saw was people.” Liam’s diagnosis made us all better human beings, and we will work tirelessly to make this world is more accepting of him.
What are your hopes and dreams specifically for Liam, and all your children?
My hopes and dreams are the same for all of my children, regardless of ability. I just want each of them to live a long, happy, healthy, life full of love.
For those that have recently found out that they are having a child with Down syndrome, is there anything you would like for them to know?
Absolutely! I would tell them this: First of all, congratulations on your beautiful baby! That’s what you need to hear right now. I urge you to step away from the computer and tune out all the facts that are being thrown at you. Your baby is an individual, just like any other. It is highly unlikely that your child will have every single characteristic associated with Down syndrome and when your child is born, he or she will AMAZE you. You will discover their beauty and realize that Down syndrome is only a tiny part of who they are. Treat your baby like any other and love him or her with all your might.
Most of all, I want you to know that Down syndrome is not as scary as it’s made out to be. Medical advancements, inclusion, and Early Intervention are changing the lives of those who have Down syndrome. The future is very bright! That being said, every emotion you are feeling right now is completely normal. Don’t be ashamed. Allow yourself to grieve. I promise that you will continue to laugh, smile, and have fun. Life will feel normal again. You will see your child as only your child and reach the point where Down syndrome is no longer a defining factor. There will be moments that bring you to your knees, moments that bring tears to your eyes, and moments that take your breath away. And one day, in the not so distant future, you will truly understand why those who are blessed with Down syndrome in their lives use the term “The Lucky Few.”
What advice would you offer new parents (or siblings) of a child with Down syndrome?
Take everything one day at a time. If you think too far ahead into the future, you will become overwhelmed. Find doctors who treat your child as an individual, instead of a textbook case of Down syndrome. Connect with other DS families. Having a strong support system is so important! (Don’t know where to start? Contact the Down Syndrome Diagnosis Network!) Treat your child like any other. Give him or her all the experiences that you would give a “typical” child. Do not hide out in your home or feel like you have to exclude your child from normal activities. Everyday life offers valuable learning experiences for your child. Contact Early Intervention as soon as possible. It’s never too early to start. Go with your own gut instinct regarding therapy. You will know when the amount of therapy feels right and you will know what kind of therapy your child really needs. Don’t think in terms of “can’t” when it comes to your child. It may be in their own time frame, but they CAN and they WILL.
Tell us about you. Any parenting resources or personal mantra/motto you can share?
I’m just a mom trying to get through her days, just like any other. Life is busy with four children, but I feel incredibly blessed. I absolutely love being a mom, but I am by no means a Supermom just because I have a child with special needs! I guarantee that anyone who is reading this right now would embrace the life they are given, just like I did. What it comes down to is this: If I can raise four good human beings, then I’ve done my job. I take that job very seriously and I put everything I’ve got into it. When it comes to Liam, I feel very passionate about shattering all the misconceptions about Down syndrome. I share Liam through my blog and social media accounts because I want people to see the truth about Down syndrome. What you will see is a little boy, just like any other, with a contagious smile and captivating eyes, who is surrounded by a family who loves him with all their might. Our “imperfect” life is actually perfectly normal and perfectly blessed. Liam is already making a difference. He managed to capture the hearts of those near and far. Liam and I are on a mission to show the world that Down syndrome is nothing to fear!
One in every 691 babies in the the United States is born with Down syndrome, making Down syndrome the most common genetic condition. Approximately 400,000 Americans have Down syndrome and about 6,000 babies with Down syndrome are born in the United States each year. To learn more about Down syndrome, check out the National Down Syndrome Society website.
Stefanie blogs over at Lexie Loo, Lily, Liam and Dylan Too, and you can also connect to her on her Facebook, Twitter and Instagram.