Tyler Joseph Orme

Look how adorable and sweet this little guy is. It is really a strange thing how Dave and I can feel so much love and joy for our baby, but yet there is sadness behind it as well. No one wishes to have a baby with problems. I think of all the grandchildren and great grandchildren on both sides of our family, 70 plus at least, and none of them born with any major abnormalities. We are the first to have a "disabled" child on both sides. I know the blessings of having a baby with Down's will outweigh the painful emotions that go along with it, but I also think Dave and I are just starting to get over the shock of it all. I love Tyler. I always speak about him in a positive tone, but I do want to share how it is hard too.

I have a close friend, Alta Hales, who, in a way prepared me for what was to come. Her baby boy Elliot was born with Cystic Fibrosis a few months before Tyler. It was the first time something was "wrong" with one of my friends babies. I felt so much grief for her, but at the same time, her little Elliot is one of the cutest babies I have ever met. I really don't know how to express a lot of my feelings about Tyler and sometimes I think I have repressed a lot. Dave and I had one of our first real conversations about our feelings about Ty this last weekend. I don't even realize how tender my feelings actually are I talk about it out loud. It is just weird how I feel so happy and sad at the same time when I think of Ty.

This weekend we spent with Jessie, James, and their three kids. Naomi is 5 weeks younger than Ty. I feel like everything with Tyler is normal, until I am around other babies. Just holding Naomi makes my heart sink. To feel her core strength, to watch the way she plays with toys, to see her rolling around, to feel the firmness in her muscles. I don't realize how different Tyler is until I am around other babies. There is one word I hate more than any word when describing Down's babies, "floppy." I felt like I was going to strangle the next person who used that word. In my mind, the word "floppy" is what comes to mind after you catch a fish and it is flopping around before it finally dies. What a horrible image when people describe my son that way. However, when I held Tyler after holding Naomi, the only word that came to mind was just that.

I don't really know why I am writing this, other than I think it will be helpful for me to admit that it is hard. People are now approaching me at the grocery store and at the park asking questions about Tyler's condition. I am glad I can answer questions without getting emotional, but sometimes it was easier to pretend he was just like every other baby. Pretty soon everyone who meets Tyler will know that he is different. Many people seem to be accepting and comfortable, but often they are not.

There is a pretty hilarious Seinfield episode where Jerry, Craimer, and Elaine meet the "ugliest baby they have ever seen." The first time Craimer sees the baby, he nearly falls over just looking in the crib. During the whole episode, they each give horrified and disgusted looks if they even catch a glimpse of the baby. That episode keeps coming to my mind, and it is not so hilarious now. They over dramatize everything in Seinfield, but I don't want people to be scared to look at my baby. Some people are. I can feel it.

One week after Tyler was born I was out in a crowded museum and I saw a woman with a severely disabled little girl. It was obvious that the girl would never be able to walk or talk. I approached this mother and asked a question about her daughter. That was the first time in my life that I chose not to look away and actually found the courage to ask about a handicapped child. When I told the woman about the baby in my arms that was only 5 days old, she said, with a loving smile on her face, "He is going to open a whole new world to you." She was so right. There is a whole new world out there.