Lilypie Premature Baby tickers

Lilypie Premature Baby tickers

Wednesday, April 17, 2013

Different


Jack being Jack...happy as can be!


I think all parents want their little one(s) to fit in.  Unfortunately, in our society, different is often perceived as bad or wrong.  So, for Jack’s sake, I don’t want him to be different.  Last week, I ran into someone that I hadn’t seen since I was pregnant.  Even so, she knew about Jack’s early arrival and our story.  She asked, “How old is he now?”  and I proudly answered, “2 and a half!”  And then she said, “Does he have any..?”  And, I didn’t let her finish…but I knew what she meant and my heart cringed (if that’s even possible).  She meant, "Does he have any issues, specials needs, medical needs?"  She meant, "How has prematurity impacted him?"  I quickly answered something about him having therapies, but that he’s doing great.  And as I drove away, I wondered, “Did I create this?  Did I ask for this type of dialogue by sharing our story?  Did I encourage a conversation that wouldn’t occur if Jack were born full-term?  Is it my fault that someone immediately asks me about Jack’s “issues” instead of what Jack likes to do or his favorite snack?"   And I started thinking and worrying about whether I should continue to be so honest and real about how prematurity has impacted Jack and our family with this blog.  Because, I know that Jack and his journey isn’t just about prematurity…but how do I make sure everyone else knows that?  How do I make sure everyone knows that Jack’s journey has definitely been different…but that Jack is not?

And that very night, one of my fellow bloggers wrote this post, "The Truth About Prematurity."  
 
And then, I stopped worrying.  As long as Jack knows that his Jack-ness is what is important, I can continue to share our experience with this blog.  Jack knows only that he is my world.  I don’t wake him up every day and say, “You were born early!  You’re a preemie!” (I usually say, “Good morning Stinker!”)  So, when I talk about Jack in my daily life (and on Facebook), you might hear about his new phrases “I need help” or “Bless you, Mommy!”  Or you might see a pic of him getting “eaten” by his folding chair.  I sometimes share these “day in the life” type stories in this blog as well.  But, that’s not my intention for this blog.  My intention has been and always will be making others aware about the impact prematurity has on a baby and a family.  For me, pretending that everything is fine and there are no impacts or effects from prematurity,  tells the public that research into preventing it and things like preeclampsia…well, it’s not really necessary because preemies are “just fine” and all “caught up” by age 2.   And it’s just not true ("Catch Up By Two?").  And people should know that.  I was at an event recently, raising funds for families affected by prematurity no less, and a guest actually said, “The earlier the better!” to a pregnant friend nearing her due date.  If that isn’t proof that people are misinformed or uneducated about prematurity… 

So I’ll keep on writing, until I’m satisfied that more people are aware…more is done to prevent premature birth…more is done to improve care for premature babies…more services are provided to children and families affected by prematurity.  I wholeheartedly believe that silencing the stories of prematurity are doing a disservice to my son and other babies born early like him.  Nothing will change or improve if I (and other preemie parents) stay quiet about the struggles he has faced so far, from his very first days, and may likely encounter in the future.    


Look at that face!  This kid couldn't be happier...he loves dirt!


2 comments:

  1. Hello, fellow blogger :-). Great post! So here is my question. We all want to reach "the rest of the world" but it seems that many of us reach mostly other preemie families. I LOVE reaching preemie families and think it's really important, but how do we get to the next ring out too? (Rhetorical question more than looking for you to solve the problems.)

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  2. Tatum - The problem is...I feel like I do need to solve this very problem. Sometimes I just want to forget about prematurity...but I can't! I love connecting with preemie families too, but you are so right. How do we reach outside of our "world"? We need a big shindig in a tropical location for all of us to brainstorm together :)

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