Mother seeks to dispel some myths about Down syndrome

The following was written by Hillarie Mueller, lead project manager at rustmedia.

I'm a mom of two wonderful boys, Colt Bentley, who will be 2 in October, and Lincoln Matthew, who will be 5 months old in October. October is a very special month for our family. It's the month we celebrate another year in Colt's extraordinary life and a month we celebrate awareness for our second extraordinary child, Lincoln.

October is Down Syndrome Awareness Month. This is our family's first time celebrating.

Our world was turned upside down when we found out about the diagnosis. We had no prior knowledge about the chromosomal defect until birth. From that moment on, I began to experience the world's definition of Down syndrome. The instant we were told, I felt the pity, stereotypes and burden that society pigeonholes Down syndrome to be. After the shock wore off, I promised myself I wasn't going to be sad, I wasn't going to treat Lincoln any different from Colt, I wasn't going to think about anything else other than the fact that he was a blessing. After spending three months with that mindset, I realized I was in complete denial. I was sad, and Lincoln was different from Colt. He was, however, definitely a blessing.

If there is one thing I've learned from our short journey, and that I hope to teach people, it's that Down syndrome is not something you can put in a box. Each case is completely different.

I think the best way of creating awareness for Down syndrome is to first discuss how society views it. Let's be honest, it's the look: the narrow eyes, a tongue that hangs out of the mouth, the flat-looking face and impaired speech. People with Down syndrome are often referred to as mentally retarded. It is often thought they will always live with a family member, won't function in society and aren't intelligent human beings. Although sometimes some of these things can be true, there are many misconceptions.

Down syndrome is a chromosomal defect that affects chromosome 21. In a normal chromosomal makeup there are two of each chromosome. With Down syndrome, there are three copies of the 21st chromosome. There are also three different types of the condition: Mosiaic, Non-Mosaic, and Translocation trisomy 21.

The "look" of a person with Down syndrome can be classified with what are called "soft signs." The entire list of soft signs is not always found in each case, though. For example, Lincoln has the narrow eyes and sandal toe, but does not have the single-creased palm or a flat upper lip that others with the condition sometimes have.

Children born with Down syndrome are also faced with having many internal issues as well, including muscle laxity, heart defects, hearing problems and intestinal issues. Again, not all of these issues are found in each case of Down syndrome. These issues can also vary in intensity. In Lincoln's case, his heart tissue has a small defect called a ventricular septal defect, which is expected to close over time. However, there are some Down syndrome patients who have to have major open-heart surgery due to valve issues and development.

Unlike other birth defects, there is no way to tell the degree of functionality upfront. The only thing the tests can tell you is what type of Down syndrome your child has, along with the soft signs and internal problems with which they are born. The rest is a story waiting to be told. Each day you turn a new page. Each day you learn more about your child. Each day you are more humbled. Each day you find your new normal. Each day an extraordinary child blesses you.

The Down syndrome journey is hard. It's not easy, it's scary, it's rewarding. It's full of pain, full of joy and full of mystery. My biggest request as a parent of a child with Down syndrome is that you don't pity, stereotype, belittle or feel like you have to remind me of the blessings of this journey. As parents we are completely aware of how extraordinary our child is; we don't have to be reminded.