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Trisomy 21: A Mother’s Journey with Down Syndrome

trisomy 21

Kathy Zadak shares her story of having a 2-year old son with Down syndrome.

When my son Ryan was three days old, the doctors told my husband and I that our baby boy had been diagnosed with Trisomy 21, Down syndrome. We were crushed.

Someone in the genetics lab had made a huge mistake.

How could this happen? We were a young couple, I did everything right during my pregnancy— took my prenatal vitamins, never missed a prenatal care visit, ate healthy food, did not drink, exercised regularly. Everything was supposed to be “perfect” upon our sonʼs arrival. We were having a baby boy to join our daughter, what else could we wish for?

trisomy 21

Certainly not this. This was not the son we were expecting. We thought we were living a horrible nightmare. To top it all off, the “genetics lady” who gave us the news could not be less tactful. She tried to be sensitive in her own way and kept explaining what the diagnosis meant in medical terms. She kept offering to answer questions we might have. I knew nothing about Down syndrome and I did not necessarily have any specific questions at that particular time. How could I ask questions when I did not believe what they were saying?

They had just told me my newborn wasnʼt the son I was expecting. As I was trying to digest and understand what Trisomy 21 was and how it would affect my son and our lives I started asking random questions and wondering about Ryanʼs future. I wonʼt forget what that woman said that day: “Your son will probably not go to college”.

I could not believe what I just heard. Who is she to say such thing? What does she know about my son? For three long days after my baby boyʼs diagnosis, I cried and mourned the child we lost, the child we did not get. I was literally numb from grief. I thought nothing worse could happen to us.

After the third day, everything started falling into place and make sense. Today, I am certain Ryan is the perfect addition to our beautiful family and without him and his diagnosis we would not be who we are today. My perspective on life is completely different and I am a better person because of him. I would not change him for the world. He is, along with his big sister, the joy and light of my life and I am so proud to be their mama.

Yes, Ryan is delayed. Yes, there are a lot of challenges. Yes, there is a lot of work that goes along with raising a child with special needs. All of that is true; however, I can tell you that I embrace it all. I celebrate it with all my might and I enjoy every little part of it and every one of Ryanʼs accomplishments, as little as they may seem.

trisomy 21

Today, Ryan is close to three years old. He started walking three months ago, he has learned sign language and I can comfortably say that he knows signs and has specific sounds for over 70 words. He loves playing with his big sister, loves music and dancing, enjoys pretend play in his playhouse and play kitchen and loves going to “school”. He is a very happy little boy that will for sure warm your heart if you ever meet him.

He is not the child I was expecting. He is so much more and I thank God each and every day for having chosen us to be his family.

As far as the genetics ladyʼs remark on that dark day in the hospital: yes, she may be right and maybe, just maybe he might not go to college. I know there will always be many uncertainties about what Ryan might be able to accomplish or not. However, one thing I know for sure and that is that I will do everything on my power to make sure he is a happy individual and that he always gets all the support he needs to become as independent as he can as he teaches others love, kindness and acceptance. And I believe he is going on the right track.

trisomy 21

Want to learn more about Down syndrome?

Here are some resources that Kathy found helpful when her son, Ryan, was diagnosed with Down Syndrome:

Down Syndrome Association of LA
Down Syndrome Research and Treatment Foundation
Club 21
Signing Time
National Dow Syndrome Society


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5 Responses to Trisomy 21: A Mother’s Journey with Down Syndrome

  1. Melissa Allen April 27, 2012 at 7:15 am #

    Beautiful story. Beautiful boy. Beautiful family. Kathy, you are inspiring. Your family is just perfect.

  2. Marieke April 27, 2012 at 8:00 am #

    Kathy,
    What an inspiring story. It sounds like you did an awesome job overcoming probably one of the most difficult experiences a new mother can face. Ryan is awesome and what a ray of light he is!

  3. Pamela S. April 27, 2012 at 9:52 am #

    A lovely, uplifting piece, Kathy. I am so glad you shared your experience. And I love that family photo! Beautiful.

  4. Popo Joy April 27, 2012 at 3:30 pm #

    Thank you Kathy for sharing your special little boy and family with us. Your family rocks!

  5. samantha April 30, 2012 at 8:42 pm #

    A beautiful and inspiring family and story. Thank you for sharing!

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