Tuesday, February 2, 2010

From the heart of a mom with a SN child...

Below you will find the words and raw emotions of an amazing mom...a mom to a little guy that battled IS.

When I read her post, I couldn't help but feel such a strong connection to every word she wrote. I felt as though she was speaking for me. After reading her post, I emailed her and asked for her permission to post her thoughts and feelings on our blog. So here goes:

I hardly recognize myself anymore.

In the mirror. Or the heart.

And sometimes it makes me sad. Sometimes I'm not so sure that I'm really being Shaped. Or that I was ever cut out for this mess. Sometimes I wonder if I'd be happier had things worked out differently. If Trevy were born whole. And that I still had no idea about things like seizures and radical brain surgeries on toddlers. Sometimes I wish things were easier.

How shallow...right. I know. I've looked to my left...and have seen those with more on their plate than myself.

And yet...

I know I have SO much to be thankful for.

God, do I ever know.

For which I am often reminded both by myself...and others.

But you know what?

Sometimes I'm just not. Sometimes my emotions get the better of me.

Sometimes I'm sad. And angry. And disappointed. Faithless. Overwhelmed. Grinchy...with a side of pissy.

Great expectations lead to great disappointments

So shoot me.

That in spite of every thing I have to celebrate...

Sometimes I don't.

Sometimes I cry. And whine. And sulk. And scream. And rage. And yell at the kids. Take it out on Jonathan. And silently pity party through Christmas. And the weeks following.

Sometimes I notice the glaring gap between where he is. And where he should be. Instead of focusing on the miracle side of where he is. And where he could be.

Sometimes it's all too much. And I just want to curl up in a ball and hibernate until the Future that's far too slowly unraveling is no longer unknown. And I can wrap my heart around who he will be
Sometimes a storm just feels like a flippin' storm.

I'm allowed to sometimes feel like the sad eclipses the happy you know.

It's in the rules.

It just feels heartbreaking. And more than hard. Impossible. And like...this isn't supposed to be my life.

And yes. I know that I should be happy that we can even stand here.

And dare to look up.

Maybe tomorrow I'll be bigger.
here to get the full post, and a chance to read all the comments that were posted).

Though we haven't followed the same path with our children...it doesn't lessen the pain and loss we feel.

You see right now, I am struggling with the fact that Kylie wasn't able to come away from this ordeal completely unscathed. We always knew kids with IS have a greater chance for cognitive impairment (fancy way to say mental retardation...I soo do not like those 2 words), developmental delay, and autism....but it's a whole other story when any of those things actually come to light.

It makes me wonder if where things are now are in addition to where we have been, or merely a result from it all. I really do believe the latest is a direct result, but wonder if that just puts her doubley at risk for all these things and more.

You see, I know how hard it can be for kids that are different to fit in and have the same opportunities as others. I have a brother that had to be in special classes for learning disabilities and I know have hard it was and still is for him. It breaks my heart to know that Kylie may have to endure all of that one day.

I think Danielle was right to say that Great expectations lead to great disappointments. That doesn't mean that I won't stop dreaming big things for her...just maybe alter how big I let them get until I can adjust to things better.

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