World Down Syndrome Awareness Day

Today is 3-21, World Down Syndrome Awareness Day. 3 meaning the number of the 21st chromosome. 

Almost five years ago, Katya was born. 

The whole time my wife was pregnant, we both thought there would be something not right with our child. We didn't know what it was, but we thought it was something. When the doctor told us it was Trisomy 21, my first thought was, "What is that?" But my second thought was, "Phew! At least we finally know!" We feel very blessed to have felt that something was not right. The Lord was looking out for us as it made coming to grips with that news much more bearable. 


The last five years have been nothing but great for us. We do worry about things, but for the most part, Katya is just our daughter, and the fact that she has one extra chromosome just means there is a little bit more of her to love. The first couple weeks when she was in the NICU were difficult, and we didn't know what the future would hold. 


We quickly learned that Katya would bring happiness to us more than anything. 


The above picture is one of my favorites. She is so peaceful sleeping. Just thinking about her brings peace to my heart. She doesn't judge anyone; she just loves everyone. It makes it very easy to fall in love with her every single day. 


By her first birthday, we were very anxious for her to start developing. All she did at this time was sit up; she didn't really roll around, or move, she just sat there all day. It helped us be humble, and celebrate the little milestones when they did come. We were already pregnant with her younger sister, and we were sure that a little competition would be good for her. 


Katya has shown us that although she will have troubles, she will be mostly normal like other kids. She'll make us laugh, make us cry, and she will want to learn. She has loved books for as long as we can remember and now that she is in preschool she is getting better at understanding the idea of reading a book. Each night when we read scriptures, she wants to read them with us, and points to words in the book and says what she thinks they mean. Being in education, I have felt great concern about her education. As I mentioned earlier, I have learned to be patient and allow her to develop at her own pace. I have learned that she will learn things in her own due time. She may be behind other kids, but she still can learn, just like any other kid. 

Katya's happiness infects other people. Whenever we are out in public, people smile almost nonstop as soon as they see her. I joke with my wife that if she ever leaves me a widower, I'll have no trouble finding a wife as long as I take Katya out with me. She is a magnet for all kinds of people. Old women in Costco have asked to kiss her (awkward - the request was more of a notice--I could do nothing to stop it).  


Katya is almost 5. She will start Kindergarten this year. She has spent the last two years learning all kinds of great things in preschool. I am nervous for how other students will treat her. I already notice it happening more and more now than ever before. People will be mean. People will be mean to all my kids. It is sad, but that is life. Katya teaches me that I can let it roll off my back, just like it rolls off her back. 

I haven't thought for a long time what it would be like if she were normal, because to us, she is normal. She is our first kid, and we didn't know any different for a long time. Now that we do, we are amazed at how unique each of our kids are. They have their own personalities. 

Every so often, an adult gets brave and asks what they should tell their kids when they ask why Katya is different. I find it easiest to relate it to themselves. Think of how you have one color hair and someone else has another color hair. Think of how peoples' eye colors are different. Think of how one person is very tall, and another is very short. Think of how some people are very athletic, while others may be very smart, or very whatever. What makes Katya different is what makes her unique, just like every other person in the world.

Right now, most people can't understand what she says. Someday, they will. Right now, she can't jump very well. Someday, she will. I pray that I will still be lucky enough to share those momentous occasions with her. 


Have a Good Life. 


    Great stuff here, Jethro, and I'm not really talking about your post.

    If you hadn't written it, though, I wouldn't know Katya as well, nor would I understand some of the life experiences that have made you you.

    Life is a difficult challenge. I appreciate you and your willingness to publicly share some of the more personal things in your life. Have a good life, Jethro. You deserve it.