Monday, December 12, 2011

A Mess


I love you.  There is no question about that.  I adore you.  I can't imagine my life without you.  And I know you're molding me into a better person everyday.  I know it.  But evenstill, sometimes my heart aches.  You've been doing so well lately.  You haven't had a seizure since last March (knock on wood) and hopefully that means that we've finally turned a corner with those blasted seizures.  Something seems to be clicking for you recently...a lightbulb has gone off.  You are giving more eye contact, seem to have a desire to DO things, and overall, I just couldn't be happier. 


I'm not.

I feel horrible about that.  I know the blessing you are to me.  And, yet, I have struggled this past week more than I have in years.  Seriously.  Years.  I haven't felt this way since you were an infant.  You, in your Samantha fashion, have been waking up way way too early.  The other morning, as I tried to get you back to sleep on the couch, I wished you were "normal."  Oh, it makes me sick to even say that...but it's true.  I wished you didn't have to move your fingers constantly.  I wished you'd stop rubbing your face against my shoulder.  I wish you were able to hold. still.  I wished you would sleep.  I wished you could say words.  Words.  Just thinking about you being able to TALK makes me cry.  I look at this picture, into your eyes, and I know you have something to say.  So...Say It.  I wished you didn't have tight muscles and you didn't have to wear stinkin' braces on your feet that rub against your skin and give you sores.  But do you tell me about it?  No.  I just discover it.  I wished you didn't have the necessity to chew on your fingers, incessantly, leaving you with chapped skin.  I wished.  I wished.  And I wished. 

And then, I felt really bad that I had wished all those things instead of wishing for a patient heart. 

But, that's what I'm praying for now.  I'm not exactly sure why things are hitting me like this right now.  It's been a long time.  I understand that this is probably normal.  But I don't want to be "normal," just like deep down, I'm not sure I want you to be "normal" either. 

Until I figure this mess out, know that I love you so so much.  And all this stuff I wished for that morning, YOU I would keep the same ~ and if that means keeping all the rest, ok.

I'll work on my attitude.

I love you,


  1. amen. so many people say they wouldn't change their challenges and some days, i just can't agree with that. like you, i've learned a lot and am being molded into something more, but i still ache for my daughter to be physically whole as i had initially imagined. working right alongside you...

  2. Thanks for keeping it real. Sometimes that doesn't happen very often in our little community. :) I think all of us have bad days or bad stretches of time. Before we were able to figure out Jackson's meds, I think I had a bad couple of years. It was just so dang frustrating. I hope the sun shines again for you. Until that happens... know you aren't alone. :)

  3. Such a beautiful picture of Sammy! Thanks for have such an amazing way of putting things into words. Praying for you and your family.

  4. Oh your post really touched my heart... I know that if Sami could speak she would tell you she is so proud of you--- she would thank you for being her champion-- and most of all, she'd sau that she loves you with all her heart and soul. Call me if you ever want to chat!



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