For the first time in my life, I am celebrating October as Down syndrome awareness month. For the first time, I have a true understanding of what Down syndrome is and it is completely different from what it was just 8 months ago. I had always thought of myself as a very open-minded person, but now I know that I was very ignorant. My eyes, heart, and mind have been opened because of my daughter. She is the very best part of me and she is teaching me things every single day.
When learning of her diagnosis, I began following accounts on Instagram of children with DS. I was desperately searching for a peek into my baby’s future. What I found was remarkable and inspiring. I’d like to give a shout out to these families that have been showing me how beautiful this life is. If you have some time, check them out! littlelucy_james, chosenforjoy, atalialynix, mizzoumum, roryandjoey, flicks_on_fleek, downwith_benji_noah, changingthefaceofbeauty
Here is some of what I’ve learned:
1. Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies the U.S. is born with DS. It is not as rare as you might think! Of those births, only 1% is hereditary. Most cases are quite random and “out of the blue.” This type is called Nondisjunction Down syndrome and is what Kara is diagnosed with.
2. It is a common misconception that people with Down syndrome are always happy. People with Down syndrome experience feelings just like anyone else. I can tell you that my 11 week old baby complains just as much as she smiles.
3. Babies with Down syndrome usually have Hypotonia (low muscle tone) which is why it might take them a little longer to do things like walk, talk and eat solid foods. However, with the help of therapists and the support of family, they will always get there. When I think of Kara’s timeline, I try not to compare her to other babies. Who cares if she doesn’t walk until she’s two years old?! I think forward. She will still walk. She will still talk. She will still eat solid foods. It doesn’t matter when she gets there.
4. It is called Down syndrome. Not Downs Syndrome. Though the name might give it a negative connotation, it is simply named for Dr. John Langdon Down who first described the syndrome in 1866. It wasn’t until 1959 that the extra chromosome was discovered. We are learning all the time. As a matter of fact, when Jacob and I were introduced to the Down Syndrome Guild of KC, we were told that we could disregard a lot of the information that was more than 5 years old. That is how quickly things are changing.
5. There are a lot of medical concerns associated with Down syndrome. The list is long: congenital heart defects, childhood Leukemia, respiratory problems, hearing and vision problems, obesity… But did you know that people with Down syndrome are at a much lower risk for melanoma and lung cancer? And even though there are many risks, most children with Down syndrome are relatively healthy.
6. There is a wide support system. I was surprised to find so many local resources for raising a child with Down syndrome. We are actively involved with the Down Syndrome Clinic at Children’s Mercy Hospital and the Down Syndrome Guild of Kansas City. We seek help from the LeeAnn Britain Center and Kansas’ Infant-Toddler Services for Kara’s therapies. We’ve also been connected with some really amazing people from all over the world who are also raising children with Down syndrome. These families have been the best resource of all.
7. Down syndrome is not determined by maternal age. Although the incidence of births of children with Down syndrome increase with maternal age, it does not make you immune to the possibility. I was 27 years young when I gave birth to Kara. In fact, 80% of children with DS are born to women younger than 35 years of age.
8. People are inherently GOOD. I used to think that people would not accept my daughter or that they would treat her as less of a person because she has DS. I am happy that I was so wrong. Most people are blind to the joys of knowing someone with Down syndrome (just like I used to be), but we have received more encouragement and support than I was ever expecting. There is more excitement than there is judgment. I am so glad to have my daughter grow up in a world where Down syndrome is becoming more and more widely accepted.
9. Down syndrome is NOT a scary thing. Naturally, we are afraid of the unknown. I knew nothing of Down syndrome before we got our diagnosis and I was terrified. All it took was a little education and I’m here to say that Down syndrome is an AMAZING thing and I wouldn’t have my daughter any other way (well, maybe I’d take away her heart defect).
10. Most importantly, I have learned that my child has a BRIGHT future. Please remove the “R” word from your vocabulary. My girl is smart and strong. She will continue to grow into a beautiful woman. I see no limitations for her because I am positive that there is nothing that she won’t be able to accomplish. People with Down syndrome are graduating with college degrees. They get married. They live independently. They are smart and funny and wonderful. We are all human and people with Down syndrome have more similarities to a typically developing person than they do differences.
My life is so much richer because my daughter has Down syndrome. I know that she has touched many lives already and will continue to do so. Please join me in celebrating Down syndrome this month and every month!