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The REAL Truth About Life With Down Syndrome

In 2013, we received the surprise of our lives. Shortly after our “textbook perfect” son was born, we were handed a Down syndrome diagnosis.  Those words are, without a doubt, life changing!

Life with Down syndrome

 

My initial reaction was shock, fear and dread. All I could picture was a life locked away in our home, living in embarrassment.  But to my surprise, things didn’t change in the ways I expected.  As the days passed, life began to feel quite normal. I often forgot that Liam had Down syndrome and I quickly learned why families who are blessed with Down syndrome use the term “The Lucky Few.”

Liam fit perfectly into our family from the very beginning. He was the missing piece that we didn’t even know we wanted or needed. A Down syndrome diagnosis changes everyone in the family, but not in the ways that you would expect.  It’s something that touches you so deeply that you are eternally grateful and forever changed.

The Lucky Few

 

We are nearly 3 years into this journey. The years flew by in the blink of an eye and I’m no longer that terrified mom in the delivery room. I learned that Down syndrome is not the scary monster that it’s made out to be. I often picture the moment when Liam’s eyes first locked with mine.  The moment that I knew. It’s still so vivid in my mind, as if it happened yesterday. And instead of feeling my heart plummet with the realization, I now smile at how incredibly blessed I am to be able to love this beautiful boy and be loved, so unconditionally, in return.

It may be difficult people to understand, but we are happy and we are so proud of our son. We’re not embarrassed or ashamed. Life isn’t supposed to be perfect and we embrace this perfectly imperfect journey. That being said, life isn’t all rainbows and unicorns. It isn’t for any human being on this Earth. Thankfully, the challenges that we face with Down syndrome are not within our home.  The challenges come in the form of all those misconceptions about Down syndrome. After I had Liam, I quickly realized that everything I thought I knew about Down syndrome was WRONG.  You truly can’t understand something until you live it.  Fighting those misconceptions is a daily battle but I will keep fighting. I love sharing our family with the world and spreading awareness about a genetic condition that is so often misunderstood!

Here are the common misconceptions about Down syndrome:

People who have Down syndrome are unhealthy.

Although there are a variety of health conditions associated with Down syndrome, many people who have Down syndrome are 100% healthy.  Liam is one of them.  Even if there are health issues, medical advancement helps them live healthy lifestyles and prevent issues before they occur.

People who have Down syndrome die young.

Not true!  The life expectancy in the early 1980’s was 25. Today, it’s 60. That number will only continue to rise.

Only older women give birth to babies who have Down syndrome.

This is one I used to believe, which is why I didn’t believe it could happen to me. Although the likelihood of having a child with Down syndrome rises with age, 80% of babies who have Down syndrome are born to women UNDER the age of 35!

Down syndrome is hereditary and caused by something the mom or dad did wrong.

Down syndrome is the most common chromosomal condition and is not caused by anything the mother or the father did wrong. There are 3 types of Down syndrome, and only 1% of all cases is hereditary.  The other cases happen by chance.  My chance of having a child with Down syndrome was 1 in 691.

People who have Down syndrome have a severe intellectual disability.

Most people who have Down syndrome only have a mild to moderate intellectual disability. Thanks to Early Intervention and advancements in education, children who have Down syndrome are thriving and even attending college.

All people who have Down syndrome are the same.

Although they may share some of the common physical characteristics of Down syndrome, it’s important to remember that people who have Down syndrome are individuals. They look more like their family members than each other.  They have their own strengths and weaknesses, and a wide variety of abilities.

People who have Down syndrome are happy ALL the time.

People who have Down syndrome can experience every emotion, just like anyone else.  Liam is happy 99% of the time.  But when he gets mad or frustrated, WATCH OUT!

People with Down syndrome are suffering.

Please, please, PLEASE don’t say that someone “suffers” from Down syndrome.  They are not suffering from a genetic condition that they were born with. They are a person just like anybody else!

There is no support for families who have a child who has Down syndrome.

The Down syndrome community is simply amazing! There are so many support groups, both local and online. The Down Syndrome Diagnosis Network is a great place to go to find an online support group and find valuable information and resources. Support also begins in the home (or daycare) with Early Intervention shortly after the baby is born.  A team of therapists work with these children to help them achieve all their milestones. Liam started early intervention when he was just 2 months old. Every week since then, 1-3 therapists visit our home for his sessions. I truly believe Early Intervention is making a world of difference in children who have Down syndrome!

People who have Down syndrome have no hope for their future.

Let’s face it. We don’t know what the future holds for ANY of our children. But these days, people who have Down syndrome are doing incredible things. They go to college. They own their own businesses. They have jobs. They model. They excel at sports. They get married. They live on their own. Adults who have Down syndrome are thriving and leading productive, normal lifestyles. Children who have Down syndrome are living life just like “typical” children and enjoying the same experiences. Families are spreading Down syndrome awareness on all forms of social media. Inclusion is changing lives for all children and Down syndrome is becoming more mainstream with each passing day. Advancements in healthcare and education are continuously improving the lives of those who have Down syndrome.  The world is (slowly) becoming a better, more accepting place for people who have Down syndrome and THAT’S how it should be. People who have Down syndrome truly are more alike than different and they have just as much of a right to be in this world as anyone!

 

Families Blessed By Down Syndrome

 

So here we are, nearly three years in! Life has changed in many ways, but also feels very much the same. This was not the journey I ever expected to be on, but it’s a journey that I embrace. Sometimes the things we need most are the things we least expect. Given the choice, I would choose Liam, exactly how he is, again and again. A million times again.

Life with Down syndrome

 

 

Stefanie can be found blogging daily at Lexie Loo, Lily, Liam & Dylan Too. You can also keep up with the family on Instagram.

 

 

 

 

 

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