The Party Line

This is not so much an issue now, but when Robbie was in the NICU, and later when we started noticing his impaired motor skills, Chris and I had to learn how to "spin" the story. When people asked, "how's the baby?" or later "wow, isn't it amazing that he has no problems now?" (not realizing that indeed he did), we needed to be able to respond to these questions in a way that not only informed people of Robbie's status, but also gave them and idea of how we were feeling about things, and what kind of response we were looking for.

During the NICU period especially, it seemed like people tried to help us feel encouraged, cheered up, and hopeful. Although these are good and important feelings, I longed for opportunities to share my difficulties and concerns. I didn't always need someone to tell me about their relative who had a preemie that turned out perfect. I wanted to talk about the brain bleed, and the heaviness of wondering what the future might hold. I often just needed someone to say, "Wow, that sounds terrible. That must be so hard."

This is not a complaint against people for saying the wrong things. We came to realize that it was impossible for friends and acquaintances to know what we needed to hear unless we told them. Other people in our situation might have needed a lot of cheering up, and could have been devastated had their friends said, "that sounds so terrible." On the other hand, I was already pretty good at being optimistic (at least outwardly); the good attitude served me well (i.e., helped me survive the crisis) but it didn't always help me get the kind of help I needed from people.

I remember a time when I explained to a friend that Robbie was having difficulty learning to breathe and eat in the NICU; I was shocked when she responded "that's great!"--maybe my tone didn't sound grave enough or I ended my explanation on a positive note and that's all she took away from it? Chris and I often talked about ways to word things more clearly; we would actually plan out phrases that communicated the specific message (and emotions) we wanted people to hear.. Instead of saying, "he's doing ok, but he will still be in the hospital for a while" we could say, "well, he is finally gaining some weight, but he is still having a lot of trouble breathing and the doctors don't really know why." OR "We're excited that he's finally in an open crib, but we're really concerned about some lab results we got yesterday," OR "Yeah, he's come a long way since being out of the NICU, but he does have some significant issues that require a lot of physical therapy, so it's still been pretty challenging."

So now when people ask, I can say:

Robbie is doing fairly well, especially considering the prognosis we got after hearing he had bleeding in his brain. He has been diagnosed with Hemiplegic Cerebral Palsy--a weakness in one side of his body, which means he'll always have significant difficulty using his right arm, hand, leg, and foot. We were lucky to get it diagnosed early and have had the support of specialists and therapists, but it has been a lot of work, and it will continue to be a challenge for him throughout his life. But we're pretty thrilled about his progress.

Notice I'm ok with ending on a positive note at this point.. Things aren't as difficult now, and that's a good thing.

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Streaking for Pediatric Stroke, Day 24