Monday, March 21, 2011

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.

In the NICU at about 2 days old
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.
She still loves chilling with Dad

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

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.
Happy 1st Birthday

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.
Notice the thumb

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.
Dance Class, in March 2011
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.

9 comments:

Amy said...

Oh Jethro, This post made me cry! Of course I was reading it while I was at work. Katya is a ray of sunshine and she brightens my day everytime I see her. I love her so much!!

Doug and Amanda said...

You guys are so amazing. I love seeing all the things you do with your kids, and how much joy she seems to have.

Haley and Jon said...

I was really touched by your post. There is a reason why you guys were blessed with such an amazing daughter, because you are amazing people. I was touched by your post. I hope that if I am put in your same situation that I can do it half as well as you two do.

Haley and Jon said...

P.S. Do you know Betina, the writer of B-Happy? She is from my home ward. Small world!

Brenda Smith said...

Tears here too; What a wonderfully heartfelt post! And Katya is absolutely gorgeous! I love that video of her "reading" the books. It made me laugh at loud.

Anonymous said...

That was a really really lovely post. I almost teared up! I also got a shock - I've been reading your blog (totally by accident, you know the "next blog" button at the top of the page? Yeah, that's how) since Katya was still a baby! That's a long time, as blog reading goes. She's a wonderful kid, just as she is - having younger siblings was the best gift you could give her, she's a great big sister!

Reuel and Ana said...

dear staci and jethro
what great parents tou are. l don't know how you did it. when l first held her in my arms all l could see were all the problems she was going to have. you two saw what she could be l have never heard you say any thing down on her from you. always happy and up beat. bless you.

Lena said...

Thank you for this post! I love reading about Katya! She is a wonderful child of God and has such a sweet spirit!

Kenz said...

Sweetest post. I can't help but smile whenever I visit your blog and see the cute pics of Katya. She is a ray of sunshine. And you and Staci aren't too bad yourselves ;), Congrats on number four. You guys are fast!!!!!