Tuesday, January 31, 2006

Normal

Karen Brown writes:

What is your definition of "normal?" Mine has changed over the years, just as my life has evolved.

But "normal" really took on new meaning when I was five months pregnant with my first child. That's when an amniocentesis revealed that the baby I was carrying was a boy with Down syndrome.

His father and I grieved and wondered whether we were up to the task of raising a child with disabilities. Thank God, it turns out we were.

As first-time parents, our baby, Casey, became our "normal."

After spending the first three weeks of his life in intensive care, we got our boy home and into the Brown family routine. Most babies learn to sit up when they're 5 months old. That's the norm. Casey did it when he was 10 months old. I was so proud.

Casey wasn't walking when other babies were. My husband, Ron, told a friend, "My Mom tells me that I didn't walk until I was 18 months old so I don't know whether Casey isn't walking because he has Down syndrome or Brown syndrome."

At 19 months, he started walking. I was so proud.

When I was pregnant with my second child, Casey's pediatrician made a remark that hurt me deeply, although it certainly wasn't his intention. He said, "When this next baby's born you'll see what 'normal' really is."

Wrong. I knew what "normal" was. As Ron would say, "Casey is perfectly normal for a child with Down syndrome."

Casey started losing his hair when he was 20 months old. Now, he has no hair, no eyebrows or lashes or body hair of any kind because of an autoimmune disorder that may or may not be related to his Down syndrome.

He's not sick, but people sometimes look at him with pity or even alarm. I don't mind the stares. There's a natural curiosity about seeing a bald 9-year old. But I sure don't care for the pitying looks. I want to say to those folks, "He's bald, not dying."

Again, having a bald 9-year old is "normal" for us.

Sometimes people make a comment about Casey such as, "Down syndrome kids are so loving." They're right. Casey can be very loving. He can also be crabby, sad or mad. What a statement like that really does is take away Casey's individuality. Most people with Down syndrome or their parents will tell you that it's not the disability that defines the person, just as it's not hair or eye color that makes a person be whom they are.

People usually respond to Casey in a positive and enthusiastic manner. I assume that's because it's what Casey projects. All parents think their children are exceptional and I'm no different with my sons. They're amazing and remarkable boys, both of them. But in an interesting twist on "normal," my younger son, Jesse, is sometimes jealous of his older brother. He thinks that having Down syndrome gets you noticed. He'd like to get in on some of that center-of- attention action.

That's sibling rivalry for you and, another aspect of what's normal in the Brown household.

5 Comments:

Blogger Lauren said...

This is beautiful. As a para in a middle school who supports kids with down syndrome every day, I find my self questioning what normal is all the time. I don't know the answer except everyday it becomes clearer that the similarities outweigh the differences by far.

9:17 PM  
Blogger Brian_Svoboda said...

I never really felt I came anywhere close to understanding the blues until I was 35 years old, when my son's preschool teacher called us at home to ask whether something had happened that would explain his strange behavior in class. That night, I listened to Blind Willie McTell's "Broke Down Engine." For the first time, I felt, at least a little bit, what the music might be all about -- to find yourself in a place where you were powerless, from which you could never leave, and yet from which you badly wanted release.

That said, I vehemently reject the whole idea of "normal." Dignity and inalienable rights -- the only things that matter -- flow from being a human being. In those things, we are all the same. Unfortunately, however, we live in a world where one's worth is judged increasingly by how useful one is to others, or by how closely one conforms to others' images of themselves. That is just wrong.

11:16 PM  
Blogger Michelle said...

What a wonderful post! I also have a daughter with Down syndrome and could relate to a lot of what you wrote.

11:45 PM  
Anonymous trisomymommy said...

As a new t21 parent, I find that I keep checking the developmental milestones in the "What to expect" book. Nobody can tell me what to expect, and yet I do it anyway. But gradually I'm letting go of my expectations, my notions of normality, and cultivating exactly the mentality you expressed here. I hope I can just embrace whatever my daughter does, whenever she does it, and call it normal for us.

9:55 AM  
Blogger WIP said...

normal is any version of your every day life. normal is as normal as you want to make it

normal can be defined by how you want to live


your family sounds just as "normal" as mine does :-)

beautiful post

2:25 PM  

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