Receiving a prenatal diagnosis of Down syndrome is a life-changing and emotional event. For most parents, it’s a moment that becomes burned into their memories for the rest of their lives. They can tell you who delivered the news, the words the medical professional used, and exactly where they were when they heard the news.
Prenatal testing currently allows parents to test for a variety of disabilities including spina bifida, cleft palate, dwarfism and Down syndrome. The most common prenatal diagnosis is Trisomy 21, or Down syndrome, affecting approximately 1 in every 700 children born in the US.
If you or a loved one has just received the news that your baby has Down syndrome, you are not alone. There is a flourishing community of moms who have walked in your footsteps, felt the same breadth of mixed emotions, and confronted the overwhelming uncertainty of welcoming a child with Down syndrome into their family.
This is what they want you to know, in their own words.
#1. You are just a typical mama.
Lauren Shelor’s son, Sawyer, was prenatally diagnosed with Down syndrome after a doctor noticed an abnormality during a 12 week ultrasound. She describes the months of appointments and tests that followed: “Our hearts were in absolute turmoil…I couldn’t sleep, breathe, eat, feel. At the deepest core of me, I couldn’t imagine not giving my baby life, but I was scared to bring him into this world.”
Later, she wrote a reflection about how being a mom of a child with Down syndrome has made her a stronger and more loving person:
“They say only the most special parents are chosen for this journey. I don’t believe that—I’m just a typical mama figuring it all out day by day (and winging it most of the time), just like many other mamas out there. There is nothing special about me. But being chosen for this—being the 1 in 700—I count it a privilege, an honor, a calling. Because the day I discovered the magic in that extra chromosome, I knew that my life would never be the same.
That extra chromosome is made out of something really special—joy, empathy, connection, understanding, acceptance, kindness. It’s an amazing thing that is hard to explain unless you’ve experienced it for yourself. It is truly extraordinary.
Being a mama to a child with Down syndrome isn’t how I expected my life to go…I didn’t write it on my dreams and aspirations assignment in high school. I didn’t check the box that said ‘family history of genetic conditions’ at my first prenatal OB/GYN appointment. Most of us never expect to be walking this path.
Most of us never expect to be walking this path. But man, this LIFE—I wouldn’t trade it for the world.
But man, this LIFE —I wouldn’t trade it for the world. That chromosome changed me from the inside out. It mended places in my heart that nothing else could. It molded me into a person who loves harder, feels deeper, advocates more passionately, and includes more fully. I am better because of it. My family is better because of it. The day that my Sawyer made me a mama, everything became brighter. Everything made sense. I was made for this. And as long as I live, I’ll never forget that day.”
#2. A prenatal diagnosis of Down syndrome is just the beginning of an incredible journey.
Caitlin was given the difficult news of her daughter’s Down syndrome diagnosis immediately after birth. Despite her seven years of experience teaching high school students with cognitive and physical disabilities, it was still devastating. In an article she wrote three weeks after Chloe’s birth, she describes the tears she cried for the “dreams I had for my child and the grief of potentially having to give a few of those up.”
About a year later, she wrote this powerful reflection in an instagram post for World Down Syndrome Day:
“When Chloe was born, the midwife who delivered her had the hard task of delivering…the news of the ‘markers of Down Syndrome.’ She made us feel that Down syndrome was not the end, it was the beginning of an incredible journey!
Now please don’t get me wrong…life after that surprising diagnosis was not rainbows and butterflies. Those three days in the hospital and the couple weeks that followed were some of the hardest moments of my life mixed with pure joy and utter exhaustion.
“My timeline has been created by what the world sees as ‘normal’ or ‘right.’ With my sweet Chloe, her timeline looks a little different, but it isn’t wrong. Chloe is perfectly Chloe.”
I remember standing in the shower weeping uncontrollably and asking God why it had to be us? Later, I would hold our little Chloe and weep in awe of the miracle of life. I remember looking at my baby and questioning every little thing, wondering if it was typical baby issues or because of her Down syndrome. I was very tired, very nervous, and very unsure during the first few months of her life, but as I’ve heard from mamas who have been in my shoes before, ‘this too shall pass,’ and it did!
Eighteen months have gone by and I find myself asking where the time went? When did she start sitting independently and smiling for pictures? When did she start holding her spoon and finding an interest in all things animals? When did I stop crying in the shower and doubting her cuteness? I may not know the exact time and place of all these things, but I do know this…she DOES them.
One of the biggest things that I have learned over these past months is the virtue of patience. My timeline has been created by what the world sees as ‘normal’ or ‘right.’ With my sweet Chloe, her timeline looks a little different, but it isn’t wrong. Chloe is perfectly Chloe.”
#3. Parenting a child with Down syndrome is a blessing, not a burden.
Ann, author behind the Wonderland Mommy blog, was told by the doctor how “sorry” she was when her daughter Alice was unexpectedly and “unfortunately” diagnosed with Down syndrome immediately after birth. Eighteen months after this devastating experience, she wrote a letter to new parents welcoming a child with Down syndrome into their family, hoping to remind them what an exciting time it is!
She wrote later in a social media post about how different their lives are because of Alice, in the best way possible:
“We were in shock and devastated. I kept thinking the doctors were wrong, because this couldn’t be happening. I had never heard of Down syndrome before and had never known anyone with it. The doctors led us to believe that this was a terrible diagnosis, that Alice would never accomplish anything, and that our lives were going to be horrible because of it.
However, they were wrong. Our life is different because we have a child with Down syndrome, but not different in a bad way. It’s better. Alice just happens to rock an extra chromosome!
“I wish people knew that parenting a child with Down syndrome is one of the best experiences in life.”
And, because of Alice, we now see the world in a whole new light. We see the beauty in everyone and everything. Alice has opened our eyes to things we have seen our whole lives, but never really ‘seen.’ There’s nothing negative about having a child with Down syndrome, and if I could choose to give Alice a ‘normal’ amount of chromosomes, I wouldn’t.
I wish people knew that parenting a child with Down syndrome is one of the best experiences in life. If everyone had a child with Down syndrome, the world would be a better place. There’s nothing ‘down’ about raising a child with Down syndrome. However, the stigma is there…[I want] to show the world what life with a child with Down syndrome is really like. It’s not a burden, just a blessing.”
#4. Comparison is the thief of joy.
Ellen Sanazaro’s story with Down syndrome began with the suspected prenatal down syndrome diagnosis of her oldest daughter, Rosalie. Processing the possibility of her daughter’s diagnosis was an intense and emotional experience, but Rosalie was born typical without any chromosomal abnormalities. Ellen’s heart, however, was changed forever.
Their family later decided to adopt Finn, their youngest son who has Down syndrome. For moms facing a prenatal or postnatal diagnosis, she says:
“Comparison is the thief of joy. But comparing diagnosis journeys can be even more destructive.
Finding out your child will be born with a chromosomal disorder or has already been born with a chromosomal disorder is life changing.
I remember every emotion when I found out about Rosalie. I was devastated, sad she would not have the life we imagined, worried she would struggle to find friends, embarrassed to tell people, and terrified of all of the unknowns. I googled relentlessly. I grieved throughout my entire pregnancy. I had faith that God would use it for good, but no matter how hard I tried to see the bright side, I couldn’t find it.
Now, I see things differently. What once caused grief now brings joy! But it took years to get here.
I remember once reading a post about a mom who never felt sad about her child’s diagnosis. I was filled with guilt as I compared myself to her, wondering if my sadness during pregnancy somehow meant I loved my child less.
“Your journey is your own. So journey on, mama!”
Hear me. It’s okay to be sad. It’s okay to be scared. It’s okay to be mad. It’s okay to grieve. It doesn’t make you a bad mom. It doesn’t mean you love your child any less. It doesn’t mean you’re lacking faith. It is a natural part of the process of loving our children as they are…
…Each of us will have our own journey of processing our child’s diagnosis. For some, it will be quick. For others it will take time, maybe a long time. And that’s ok. So please, don’t compare. And give yourself grace. You are doing great and your child is so loved. Her journey is not your journey. My journey is not your journey. Your journey is your own. So journey on, Mama!”
Your child’s diagnosis is a turning point.
Many families reference the moment they received their child’s prenatal diagnosis of Down syndrome as a profound turning point in their story—even if they couldn’t see the hope and joy that awaited them at the time. And looking back, they wouldn’t choose to change it.
Your child’s diagnosis is a turning point for you as well. And like many of life’s turning points, it is often unfamiliar and unexpected. We are here to help you enter this next chapter with confidence, support, and love that drives out fear. Congratulations on your little one, and welcome to the Down syndrome community!
This piece was written as a part of the Extraordinary Human campaign by Voices for the Voiceless to celebrate World Down Syndrome Day.
Mariah Maza is the Lead Editor at Voices for the Voiceless, the nonprofit cultural movement to create a world where every person is valued and no one faces unplanned pregnancy alone. To connect with Mariah, email her at email@example.com.
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