Monday, May 16, 2016

What's Your Voice?

Finding something that I WANT to write about lately has been tough.  I love my children, but a "mommy" blog.  Meh.  I love food, but everything I make is from recipe or I do not care to recreate it.  I love clothes, but all I wear is gym clothes or things that are comfortable and who wants to read about that.  I work out, but I have no plan to show you or product to shill.  My life is pretty average.  Except that it's not.

I have a voice, different from yours.  My voice is as my children's advocate.  And they are anything but average.  And I don't mean that in a "special snowflake" kind of way.  My firstborn in stubborn and strong and rocks my world on a daily basis.  He is typical, but parenting him is not without its challenges.  I think his challenges are those that 95% of parents deal with.  We push through his challenges and keep loving.  I think for him, that really is the most we can do.

I often feel terrible for not thinking my children are equal.  But they are not.  I don't love one more than the other.  But right now, Allyn impacts my life more.  She just does.  She is younger and needs me more and she constantly has something going on that I have to really be there for.  She is still not terribly mobile.  So I feel a ton of guilt being with her more, talking about her, and life being centered around Allyn.  But then I realized...THAT IS MY VOICE.

I am the parent of a special needs child.  I hate saying it.  I hate hearing it.  I want her to be special.  But honestly, I don't want her needs to be special.  I want a child that is just like every other kid out there.  Performs on a average level.  But that's not who she is.  And so that is not the parent I get to be.  I had a friend once that said I was the person she was most likely to talk religious stuff to.  And I thought, "NO!"  I want to be the fun friend; the friend you ask questions about shoes or outfits, the friend you go grab a drink with.  But I'm not that friend anymore.  My life is not about these trivial things, and I have to stop pretending that is who I am.

I have become a mama bear.  I chime in on support pages about treatment.  I tell parents there is more they can do.  I want them to find answers for their children.  I want their children to have every possibility at success.

And Allyn, well, she is AMAZING.  I want to vomit when people say some child is destined for "great things."  Like every single kid out there is going to change the entire world on some radical scale.  And people really believe it.  My pessimistic soul thinks otherwise.  But then I see this child.  And in my gut, I know that she is special.  And she will be great.  And she will change the world.

And it TERRIFIES me!  I have been given a special soul to care for and nurture.  Her body is slight and not without it's many issues.  But her spirit is big.  She is magnetic.  She has overcome so much and done it without losing a sweetness and optimism that you could only find in the most pure of souls.  And I realize that she is THREE, but it's a special thing.  It really so perfect that words could not accurately describe this girl.

February was Heart Month (or whatever you want to call it).  And next month in June, we celebrate Scoliosis Awareness Month.  Scoliosis Awareness is still so near and dear to my heart.  It's where we began this roller coaster ride.  And in terms of awareness about what "having scoliosis" really means, I don't think people get it.  

So that's where this voice comes in.  Get ready for some obnoxious posts about the spine.  We need to be talking about it.  We need to be forcing early diagnosis.  And we need to be researching better treatment methods.