Trisomy 18 awareness is suddenly up

Americans have suddenly become interested in finding out what Trisomy 18 is. Presidential candidate Rick Santorum's daughter Bella was hospitalized a few days ago with pneumonia. Thank God she is doing better. She's had other hospitalizations, but because of her dad and his current place in the spotlight, this one is suddenly being reported all over the media. And because of this more people are wondering, "what is Trisomy 18?"

I wondered that myself after my first ultrasound with Lilly, when the doctor started pointing out potential problems with her. I had never heard of Trisomy 18. I couldn't even remember the phrase when we first left the hospital. I kept thinking "that "T" word ... with the number ... what was that again?"

So a lot of people are doing online searches to find answers. (I've gone from averaging 300 hits on the blog a day to 3000 a day!) It can be hard to find anything positive about Trisomy 18 though. I am thankful that I blogged about Lilly's life and that some other parents of Trisomy 18 children have done or are doing the same. We need good information out there.

We need people to realize that children, who have Trisomy 18, can have good, happy lives. That Trisomy 18 is not the child themself - it is not a sickness - it means they have three of every chromosome number 18. (An extra copy of the chromosome affects development.) Our Lilly, who had full Trisomy 18, lived 17 wonderful months. No doctor can accurately predict exactly how long a child with Trisomy 18 will live so it is wrong to not give these children a chance. There are children, currently living, that are in their teens - and older! - with Trisomy 18. A lot of online sources seem to say that these children die horrible, painful deaths. I say not so. Lilly died a very gentle death, in her sleep, after a wonderful routine day.

Anyone that has been blessed to have one of these children will tell you, that no matter how short or long their child lived, that child was amazing. I know that Lilly had a bigger effect on more people in her 17 months than many people do in a normal lifetime. We have been so amazed to have people still coming up to us and telling us how Lilly touched their life, how she grew their faith, changed their thinking about this or that, etc.

But no matter how many good things we parents of children with Trisomy 18 share with others, there will always be many out there that just don't care. They think these kids are a drain on society. A waste of time, air, and resources. It's hard not to get angry reading some of the comments that people are leaving on online news articles about Bella Santorum. Nasty, negative, hateful things.

One ignorant comment that made me just shake my head was a person that wrote that Bella would probably never learn the difference between a person and a door and certainly never understand who her father is. Have you ever looked at pictures of Bella with her family? It's obvious she knows her family and is delighted with them! To the left is a picture of Bella with her father, Rick. Look at their smiles! Beautiful! She is a happy, secure, and loved little girl.

I know because I saw that in our Lilly. She was more joyful than anyone I ever knew. And many other parents of children with Trisomy 18 say the same thing about their children.

My husband was asked to preach the sermon at church last November. He spoke on this verse from Isaiah 42:3: "A bruised reed he will not break, and a smoldering wick he will not snuff out." This verse lends itself to children with Trisomy 18 - and anyone else that society deems as a waste of resources. (It wasn't just a Nazi belief!) If you do want to go strictly by logic then yes, Lilly was a waste of money and time. Along with many many other people with all sorts of diseases, people that are elderly, hurt in accidents, or anyone that doesn't make a big enough contribution to society. And really - we are ALL damaged in some way. (I go more into this type of "logic" in a blog post from last year where I responded to a negative comment in which the person accused us of "condemning Lilly to life." You can read that here.)

But are we strictly a people that runs only by logic? No. God created us to love. And He created us to love because He IS love. "Whoever does not love does not know God, because God is love." - 1 John 4:8

It's wonderful watching God using Bella to His glory, as He did - and is still doing! - with Lilly!

I just wanted to end with some pictures of our family with Lilly - where you can see that she LOVES us and is aware of who we are!