Invisible Challenges

aboretum

While Charlie and I are out on our adventures, Charlie will inevitably meet someone for the first time.  More often than not, the conversation exchange plays out in the same way.

The stranger will ask “How old is your baby?” while Charlie is shamelessly flirting. I have reached the point in which I am fine with using her actual age. I am also okay when I  hear the “She is so small!” reaction. In which case, I explain, “She was born at 26 weeks.”

The new person continues to dote over Charlie. Charlie reciprocates with laughter and a smile. Afterwards, the stranger makes a comment about how Charlie seems “normal” despite her early arrival. I smile politely and we go our separate ways.

The meeting is pleasant until the word “normal” is spoken. There are several reasons why the “normal” comment irritates me.

First, it bothers me that “normal” is the only acceptable outcome. If she continues to have special needs, is she less deserving of affection and approval? It does not bother me when someone points out that she is doing well. But, why must the word “normal” be used?

Second, Charlie struggles with feeding (she is still formula dependent), developmental delays (which her small size disguises), vision concerns, and sensory issues. There is nothing “normal” about any of these things. The perpetuating myth that premature birth does not have any long term consequences irks me. It perturbs me that the gravity of having a preemie is readily dismissed by those outside the preemie realm.

Finally, I find it worrisome. Charlie may need leg braces or some other sort of visible medical device. Will she be as accepted and doted over as much as she is now? If her challenges become more obvious, will people start viewing her as broken?

Charlie is not one of those anecdotal preemies that will catch up to her peers quickly and easily. Like many things in life, our baby experience did not turn out as we planned. However, Charlie is not anything short of perfect. Even if, it turns out she is not “normal”.

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About Rebecca Wood

In May 2012, my pregnancy ended three and a half months early due to severe early onset preeclampsia. This is my collection of thoughts and media. It is an attempt to document and discuss our experience of navigating the post NICU world. View all posts by Rebecca Wood

2 responses to “Invisible Challenges

  • judy

    I think about this as well. While Agnes is an infant, her developmental problems aren’t obvious, but I wonder how she will integrate as she gets older. She has a tracheostomy now which is a very obvious clue that she is not “normal.” Hopefully her cuteness will overcome all awkwardness!

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