Tuesday, May 24, 2011

Don't let me hurt your feelings.

I am having a hard time figuring out what to say to people.  Sometimes they just don't understand what they are saying and I am trying not to dash THEIR illusions.  Today a gal at the pharmacy asked how old Mercy was.  So when I told her six and half months she asked the usual. 

Preemie? 

No, she has a genetic condition and she's missing some genes. 

Oh, she replies.  She'll catch up soon. 

Well, no she wont, but for some reason I don't want to tell her this, because she thinks she is cheering me up my assuring me that my kiddo will be normal soon.  So maybe its a nice thing to let them think they are making me feel better. 

I really do feel guilty if someone asks about her and I tell them.  Of course they asked, but they really don't want to know ALL of the details.  But how else can I explain why she is tiny and wasn't born a preemie.  Someone even asked me if her genes would grow back. 

Now I don't expect everyone to understand what is going on medically.  I had to research a ton to try to grasp what was going on in my situation.  But it is so strange to me how people try to assure me that it is going to be ok, and they don't even know me.  They have no idea what is going on in Mercy's tiny body.  Why do we do that?  What is so wrong with a baby who is different?  

I am trying to talk to Melodee about baby Mercy and let her know that she is "special" but I just say different from you and your brother.  She wants to know how she is different, because Melodee knows she is special, but isn't sure what I am getting at yet. 

"Baby Mercy is almost sitting up mom!  She is getting so big.  Look she is holding me!" 

She isn't almost sitting up but she does roll from side to side pretty well and she can hold up her head for a few minutes at a time before tiring out.  She especially likes to wiggle down to the end of the crib.  But to explain why she isn't crawling I tell her that our bodies are all like a big puzzle.  There are lots of pieces that go into every bit of us.  Baby Mercy is missing some pieces in her puzzle, that is why it is taking longer for her to get bigger and do big girl things.  At five and a half, this means nothing to Melodee.  But she wants to know when sister will eat ice cream with us and when she will get to go to school.  I want to be truthful so I tell her we will just have to wait and see what baby Mercy will do and when she will do it.  

I am not sure when the other two will realize that there is something different about baby Mercy.  PRobably not until we have another child and they start to do things Mercy cannot.  But I am trying to let them know that it is OK to not be doing what everyone else is doing.  And they don't need to assure me that she is going to catch up, because they love her just the way she is now.  

Now if only everyone else didn't want to assure me it is going to be ok.  Because I am learning that when things are not just how you expect, you can grow and learn and teach others about what really matters.

1 comment:

  1. Kenzie... I missed this post somehow. I really struggled with this for a long time, and to be honest ~ sometimes I still worry. My kids are so close in age ... they will never "escape" the questions about Alexander. And Alexander is only a few months older than Mercy... however. he tastes ice cream. I just explain that the z-vibe etc. is to help Alexander learn to eat. That we all have to show Alexander how to eat. And when he takes a bite = we all celebrate. I actually find myself telling them how special they are more because of all the attention Alexander gets. I guess that would be how I work in his delays/milestones/therapy. by starting with what makes them special ... then explaining that the stander is so Alexander will learn to stand and walk to play with them. People all the time ask me when Alexander was born - he must be "new" ... when I say a year, they are starting to figure out something is up.. and they walk away. Oh well ... I'm not going to lie to make someone else feel better. I guess what I'm trying to say is - you will find the right words to say.... they will come to you.

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