I lay on the table in the dark ultrasound room. The doctor seemed to speak in slow motion: “Several markers for Down syndrome.”

It felt like the walls were closing in.

I wish I could go back to that day and tell myself the truth about all the lies I was told and all the ableist myths I believed about raising a child with Down syndrome.

I can’t go back, but I can tell you the truth about Down syndrome. If you’re reading this, you may be in the same situation I was when I first heard that doctor’s words.

Here’s the good news: Down syndrome is nothing to be scared of! This condition is not simply the most common genetic disorder. It is also a gift.

Fear #1: My doctor was right

My doctor said my unborn baby had a severe heart defect, blocked intestines, and fluid in his brain. It was unlikely that my child would make it to birth. My doctor went on to say that these findings pointed to Down syndrome and if the baby did make it to birth, he would either die soon after birth or never walk and talk.

The doctor then said I could go upstairs and “take care of it” without any regard to the fact that my daughters were right next to me and old enough to understand every word he was saying about their baby brother.

To that doctor, my son’s life was disposable.

Fortunately, not everyone holds outdated and discriminatory views of individuals with Down syndrome. Lettercase, for example, is an excellent source for accurate, balanced and up-to-date information about genetic conditions.

In “Understanding a Down Syndrome Diagnosis”, author Stephanie Meredith says:

"Most of the misinformation that exists is simply outdated information before early intervention, inclusion, and progressive healthcare were the norm. Since society has begun investing in children with Down syndrome, life expectancy has doubled to about 60, and people with Down syndrome are increasingly completing high school, attending special college programs, and living independently."

Unless your doctor or geneticist has a loved one with Down syndrome, the knowledge they have doesn’t come from personal experience. Their knowledge only comes from the pages of a medical book or online or other hearsay and may be limited and biased. It’s easy to reduce a hypothetical person down to a list of scary possible scenarios, cant’s and will-never’s.

But if they truly knew someone with Down syndrome, they would tell you of all the positive, wonderful ways their loved one has impacted their life for the better. They would tell you that their loved one is living a full and meaningful life and that the only limits they have are the ones placed on them by society.

Fear #2: My child would only suffer

After we broke the news of our son’s diagnosis to our family, we quickly learned of the ableist views some of our family members held.

Unfortunately, some older family members grew up in a time when people like my son were hidden from society and sent away to institutions. They believed the lies that society had told them about individuals with Down syndrome.

One family member said, “You’re not going to keep him, right? He’s only going to suffer.”

At that moment I knew that I needed to protect my son. I needed to let the world know of his worth regardless of his diagnosis.

My son is eight years old and he is not suffering. His belly laugh when he wrestles with his dad, the jokes he makes up, the huge smile on his face when he’s playing tag at school with his friends or when he’s on his favorite ride at Disneyland tell me otherwise.

Adults with Down syndrome love their lives. Among those surveyed, nearly 99% of people with Down syndrome indicated that they were happy with their lives, 97% liked who they are, and 96% liked how they look. Nearly 99% of people with Down syndrome expressed love for their families.

I don’t know about you, but I know many typical adults who are not happy with their lives. Maybe we can all learn something from people with Down syndrome.

Fear #3: The surgeries and medical bills would crush us

When the doctor told us that our baby would need surgery immediately after birth, my fear was immeasurable.

I feared for his life. I feared for what this meant for my life and for my other children. How would we be able to afford the costs? It felt like a tidal wave was coming and I couldn’t hide.

Leading up to his birth, I spent many hours researching Down syndrome and heart defects, trying to prepare myself as much as possible. I also became a huge fan of the show Gray’s Anatomy because I was immersing myself in so much medical language!

My son was born full term via C-section weighing 4 pounds 3 ounces. When I heard him cry, relief washed over me. A nurse brought him over and I got to kiss him before they rushed him to the NICU.

He had his first surgery at two days old to unblock his intestines. Then it was another agonizingly long two days before I could hold him again. He was able to come home after only 12 days in the NICU.

The next six months were a waiting game for open-heart surgery to repair his AV canal defect. After countless visits to the cardiologist for echocardiograms, it was time.

Handing my baby boy over to the surgeons that day knowing that I may never see him again was the hardest thing I've ever done in my life. Sometimes the thing that you are most scared of can be the very thing that sets you free. There is so much freedom in surrender.

The surgery was successful and my son amazed us again by coming home after only six days in the hospital. I felt like I had been holding my breath for six months, so afraid that he would die because of the inaccurate picture my doctor had painted for him. Now that I knew he was going to live, my outlook changed and we were able to start celebrating his incredible life.

The worry over medical bills vanished after I realized that there are resources available to parents, including local nonprofits that help parents with medical bills. I even started a clothing company for kids with disabilities that donates 10% of all sales to these types of organizations.

On our own journey, we were fortunate enough to have great insurance and amazing friends who started a GoFundMe fundraiser for us. People are often extremely generous and willing to help.

It’s worth mentioning here that not all babies with Down syndrome require surgery. According to the CDC, about 50% of babies with Down syndrome have a CHD (congenital heart defect) and of those, many do not need surgery. We know plenty of people with Down syndrome who have never had surgery. Down syndrome does not equal unhealthy.

All of the doctor’s appointments and time spent at the hospital was hard, but it was worth it because my son is worth it. And I would do it all again just to have him in my life.

Fear #4: This will have a negative impact on my other children

Another myth I believed was that my daughters would be negatively impacted. I feared we would spend so much time and energy caring for their brother that there would be nothing left for our daughters. I envisioned no more family vacations and sad, isolated lives.

Nothing could be further from the truth. My daughters now have a fierce love for people with disabilities and see value in every person. Their brother brings so much joy and fun into their lives.

Since Eli has come into our lives, my daughters have had countless opportunities to volunteer at amazing organizations like A Walk on Water - a non-profit that does surf therapy for individuals with disabilities.

My middle daughter fell in love with sign language and now wants to be an interpreter. My oldest now wants to be a special ed teacher. I could go on and on about the lasting positive benefits my son has had on our entire family.

My daughters fight over who’s going to care for Eli after my husband and I are gone, but who knows: Eli may live on his own like so many adults with Down syndrome we know. We are all better people because of Eli. He is a gift that keeps on giving.

Fear #5: That I wasn’t equipped

One of the first fears I had was that I wouldn’t be the best mom for him, that this would all be too much. The truth is no child comes with an instruction manual, whether they are typical or not, and we all rise to the occasion and work it out as we go because we love our kids.

You are not alone. Down syndrome is the most common genetic disorder. The great news about this is that it’s easy to connect with other parents. They have walked this road ahead of you and are a wealth of knowledge and resources.

The Down syndrome community is a family. Our lives are richer because of the amazing people we’ve met all because of one extra chromosome.

There are many resources available, too. One is the Early Intervention Program available in all states. Your baby can start as early as six weeks old.

Two national organizations that are excellent resources are the National Down Syndrome Congress and the National Down Syndrome Society. Another great organization is the DSDN (Down syndrome Diagnosis Network) where you can be connected into facebook groups with families who have children the same age and also into local groups.

Another resource that has been extremely helpful is IHSS (In Home Supportive Services - California) that allows me to get paid to be my son’s caregiver. Every state has different resources. All states will have a local Down syndrome organization that can help you navigate it all.

Some people like to tell parents who just got a diagnosis that “God only gives special babies to special people.”

That’s a load of garbage. There is nothing special about me— trust me. I’m just a regular mom who was given something I wasn’t expecting and I figured it out. And you will too.

Fear #6: What about the future?

When we got Eli’s diagnosis of Down syndrome, I saw my dreams for my first boy’s future shatter.

The truth is, we never really know who any of our babies will grow up to be, their weaknesses, their strengths.

I can tell you that that is true for all four of my children. My girls are all older than my son. They are 22, 19 and 17. Their lives look nothing like what I planned out for them in my head while they were busy growing fingers and toes inside of me.

The grief over who I thought my child would be was forgotten when I discovered his worth does not come from the future I dreamed up. His worth does not come from his accomplishments or awards. His worth comes from who he was uniquely created to be.

Recently, I was at the doctor’s office, answering the nurse’s routine questions. Somehow the fact that my son has Down syndrome came up. I did my usual gushing about how awesome he is.

She was silent for a while and then, like she couldn’t hold it in anymore, she blurted out, “Wow, that’s really awful. You are going to have a baby for the rest of your life.”

I could have schooled her on all the incredible things that adults with Down syndrome are doing.

I could have told her all about the college students that Ruby’s Rainbow has given scholarships to.

I could have told her about all the business owners who have Down syndrome and run extremely successful businesses.

I could have told her about all the people with Down syndrome who get married.

I could have told her about all the successful models or inspirational public speakers.

I really don’t know why, but I chose to simply say, “Even if that were true, I wouldn’t mind. He’s amazing.”

The future doesn’t worry me anymore because I’ve accepted the truth that my love for my son does not hinge on what he may or may not do in this life. He is worthy of love simply by being.

Fear #7: Fear of the unknown

When we were filming a documentary about Down syndrome, my husband said something that really struck me. He shared that when we got our son’s diagnosis, we were fearful of the future. But then he added, “as the unknowns become knowns, all of our fears fade away.”

I believe so much of the fear of Down syndrome can be wrapped up into the fear of the unknown. We don’t know what we don’t know.

I grew up and went to school at a private school where everyone looked exactly the same and all fit into the same box. I wasn’t exposed to anyone who was different from me.

This is one of the many reasons we send our son to a school where inclusion and diversity are valued. The kids at that school see Eli as Eli. They are the type of people who will grow up and not be afraid to hire an individual with a disability at their workplace because there is no fear of the unknown.

One of the first things we did after we received Eli’s diagnosis was to seek out another family with a child with Down syndrome so we could see first hand what our future might look like.

I scanned my brain trying to think of anyone I knew who had a child with Down syndrome.

Then I finally saw her. She was a sweet mama I used to see in the parking lot when my girls were little at school drop off. I would see her getting her tiny baby boy with Down syndrome out of her car and just simply loving him and smiling at him and snuggling him.

I remember thinking, “If I ever have a baby with Down syndrome, I want to be just like her.”

Remembering her and her baby brought me incredible comfort those first few hard days and weeks. I sifted through Facebook, looking at friends of friends, and I finally found her. When I reached out she invited our family over for dinner. Her son was about 10 at the time and it was so fun spending time with them hearing about his life.

They told us how he’s known as The Mayor at school because he smiles and waves and everyone loves him. I loved watching him play with his siblings and my daughters, seeing him laugh.

That one night relieved so many of my fears. I allowed myself to start dreaming of a new future for my baby boy.

You’re Not Alone

If you’ve found yourself with an unexpected Down syndrome diagnosis for your baby, please don’t believe the doctors or other people around you who tell you that your child will only be a burden or that they’ll only suffer. It’s simply not true.

Take it from families raising a child with Down syndrome. There is a reason why we call ourselves The Lucky Few.

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