Tuesday, November 20, 2012

"How's Your Preemie Doing?"


“How’s Jack?”
 
It’s a question I got from the moment our son was born so early at just 23-weeks gestation. I got it all throughout his four month NICU stay. People asked after the surgeries and doctors’ visits. I still get it on a regular basis even now that he is three years old.
 
I love it when people ask about Jack, because I like to talk about Jack. He is a miracle, and I’ll share his story with anyone who is willing to listen.
 
Still, it’s not always easy to answer the simple question – “How’s Jack?”
 
I happen to think he’s doing really well. I see his progress in mobility, communication, and eating – all of which have been struggles over the past three years. But if people don’t know much about Jack, other than his rough beginnings, saying that he is doing great is certainly not giving them the full story. Many people mistakenly believe that all a preemie needs is a little extra care and time to “grow out of” prematurity. Sadly, many micro-preemies have long-term health issues that require surgeries, therapies and frequent doctor visits. Some things are life-long. In the eyes of some people who don’t know him well, describing Jack’s hurdles and difficulties may make it seem like he is not doing “great.”
 
I came to realize this when some folks that are acquaintances of mine started to ask follow-up questions about what Jack was up to these days. When I explained he was in a pre-school where he could hopefully improve his communication, mobility and social skills, people were sometimes perplexed.
 
“Is he having some difficulty talking or walking?”
 
This is the awkward moment when I calculate whether I should delve into a medical history that could take hours to explain. Do I explain to them that Jack has cerebral palsy and the ranges of what that term can mean? Should I go into Jack’s g-tube and his difficulty with eating? Does this person even want to know all of this information? Clearly they cared enough to ask, but they probably didn’t realize what doors they have opened. I don’t mind one bit going through those things.
 
My point is this – it’s easy to feel like I am underselling my son by explaining his difficulties and disabilities, rather than focusing on the miracle of his existence and steady progress. If people have followed Jack’s story since the beginning, they are well aware of the highs and lows associated with his medical history. They know he has come a long way and is a happy, growing boy.
 
But for casual acquaintances, new friends and (sometimes) curious strangers, they can hardly begin to understand him and appreciate the miracle he is.
 
All of this is a rambling post that will confuse everyone except the parents of a special needs child that has been through the ringer, but has some miraculous stories to share. On something so simple as “how is your child?,” I find myself wondering exactly how I should respond depending on my audience. People need to understand his struggles in order to appreciate where he is today. But I never want to leave anyone with a negative impression of how I think he doing because I am so proud of him.

2 comments:

  1. Everytime we tell someone that our 24 weeker is doing fine, it seems that he gets sick the next day.

    We also get people who are constantly in disbelief that he is doing so well!

    Finally....we always have people telling us about their niece/nephew...someone they know that is now an adult that was born at our son's weight that is successful and has no issues. We understand they're trying to give us hope or something! However...it's always kind of akward...as to what to say back. Um....good for them! That's our goal for our son too! We really aren't worried about that kind of stuff at this point! We still take things a day at a time...trying to make it through RSV/flu season! Besides...we love our son no matter what! No matter who he becomes! Quirks or not!

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  2. I really get this. So much depends on the context, though. If it's like a generic, "how are you (today)?" then I normally answer, "Fine! He's great!" But if it someone who really needs or wants to know the future and what we face, I give them more detail.

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