Why Having a Child With Down Syndrome Is Like Having a New Family

Over 18 months ago when my youngest daughter, Savannah, was born, I had no idea about the journey she was going to take our family on. She was born premature, at 29 weeks, and weighed just 2-pounds, 11-ounces. We went through a traumatic birth experience, and then learned she also has Down syndrome. (She has a unique, rare type of Down syndrome called mosaic translocation).

After her birth, we received more condolences than congratulations from medical professionals and some of our friends and family. They didn’t know what to say at the time, and I didn’t know what to feel. My husband and I are both nurses, but we quickly realized how little we knew about prematurity and about Down syndrome. Looking back, I see that in those early days I was actually grieving more over the birth of our daughter than celebrating it. In my soul, I felt that there had to be another way, that surely this isn’t how other families of children with Down syndrome feel. But I didn’t know where to turn.

Thankfully, one of Savannah’s amazing doctors when she was in the NICU asked me if I had  joined any support groups. It made me feel silly for a moment, when I realized that reaching out to others who are on this journey had not even crossed my mind. The doctor told me I should look online, that there were many Down syndrome support groups, and that it would be a valuable resource for our family. How right he was!

I had no idea where to even begin. The first online platform that came to my mind was social media: Facebook. So, I thought to myself “What would a Down syndrome support group be named?” And my first thought was, “Down syndrome of Alabama?” I typed that into the search bar on Facebook. And the rest, as they say, is history.

I was directed to a site titled “DSA-Gadsden.” It is a closed group, so I had to submit my request to join and state why I wanted to join. I have always been shy by nature. Starting conversations with strangers has never been a strong suit of mine. In the beginning, for me to reach out to someone I didn’t know and tell them about my baby having Down syndrome was way out of my comfort zone. But I took a leap of faith, because in my soul, I knew that having a child with Down syndrome couldn’t possibly be as bad as people make it seem.

And who better to help me realize that than someone else going through the same thing? Someone who “gets it?”

My request to join was quickly approved, with the director of the group messaging me personally. She was one of the first people to actually congratulate me on our new edition. And she said, “Welcome to the family you never knew you wanted to be part of.” That is so accurate. Because the Down syndrome community is definitely a family. And before Savannah’s birth, I never knew I would want to be a part of this family.

Then, the first person I ever reached out to connected me with even more moms in the community, who in turn connected me with more moms. Which led to me meeting some of the most amazing women in the world.

I know a woman who has created an entire company, inspired by her daughter who has Down syndrome. She believes jobs matter because they give people a sense of accomplishment and the pride of being a contributing member of society. She saw that unemployment rates for people with cognitive and intellectual delays are very high. She decided to change that. She started a fully inclusive coffee shop, where people with disabilities work alongside people without. Her daughter (who is 13 now) works with her in the coffee shops. My friend is preparing her daughter to run the the business some day. Her dream has made so many other people’s dreams come true.

I know women who have chosen to adopt children with Down syndrome. Children who have been deserted in orphanages in other countries, just because of their diagnosis. Women who have chosen to fight for these children because they want to give them a better life than they would have otherwise had.

I know a woman who was being a surrogate for another couple, but when the diagnosis of Down syndrome was discovered, the couple decided they did not want the baby. This woman stepped up to the plate for this child. She had to legally adopt the child she is pregnant with and will give birth to, because of the baby not being biologically hers.

Through social media, I have met mothers from around the world in the Down syndrome community. It’s amazing and humbling to learn these ladies’ stories, and to learn about different cultures and their beliefs and practices regarding Down syndrome. Some cultures see individuals with Down syndrome as “God’s special people,” because of the belief that everything good and perfect comes in threes; like the Holy Trinity and our children’s 21st chromosome. But there are also cultures that have heartbreaking views and harrowing stories. Countries where if a baby is born with Down syndrome, the parents don’t even take the child home. These children end up abandoned in orphanages. I have also realized that no matter where you are in the world, a mother’s unconditional and never ending love for their child is still the same in every language, culture, country and community.

There is a countless amount of others, with stories just as incredible as these. These women amaze and inspire me. I look at them and think to myself, “If I could just be half the mother she is!” They helped me realize that Down syndrome is not a bad thing at all, but rather a blessing. When I meet these amazing mothers it proves to me that anything is possible, and that the possibilities for our children truly are endless. I am thankful for all the virtuous women in the Down syndrome and disability communities who have come into my life. I am so proud and honored to be part of the lucky few. It’s the best family that I never knew I wanted to be part of.