Tuesday, July 24, 2012

the seizures are ceasing?

Dear Little Leah, 

The other day, I posted about you and your seizures on our family blog. I hope you don't mind. I did it because I try to post the truthful happenings of our lives and also because I've had a lot of people ask specifics about your seizures - what they look like, how long they last, etc. When we were at the doctor for Kate's checkup, I happened to have my camera out and you happened to start seizing, so I took some pictures. 

Oh Leah, these pictures are so hard for me to look at. They remind me how not in control of your situation I am. They remind me of how much harder you have to work to do so many things. And how downright unfair it is that you have Rett syndrome and can't even tell me what it feels like to have this happen to your little body. 

But, Leah, they also remind me of how amazing you are. The fact that something like this can happen to your body - and you don't have the ability to stop it or control it or communicate it in any way - is horrible. But you often come out of it smiling. You love when you can "kapow!" a seizure. 

Speaking of kapow!-ing seizures, your new medication has been working pretty well! You went three full days with no seizures, then you had one on Sunday morning. Then none yesterday and one this afternoon. Two in six days is so much better than our norm as of last Wednesday. Here's to hoping it continues to work and you can get back to your normal, happy, smiley, rambunctious, giggly self. 

You are the strongest and bravest girl I know. And I know a lot of girls. 

I just love you so much. Keep on kapow!-ing!!


You make Your Own Sunshine

Dear Little Leah, 
 (june 2012)

Every so often, a song comes a long that reminds me of you. A lot. A month or so ago, I was watching tv after you had gone to bed and a commercial for Lowe's (of all places!) came on and I just fell in love with the lyrics to the song being sung in the background. 

Of course the commercial only plays a tiny portion of the song, so I looked it up online and I just love the whole thing! It is YOU to a T. It's called "I Make My Own Sunshine" by Alyssa Bonagura. Here are the lyrics:

Everything is wonderful, everything is great.
Free as a bird singing outside my window pane.
Got a fresh new start; It’s a brand new day.
And I got lots of love to give away.
It don't matter if it’s rainin', nothing can phase me.
I make my own sunshine.
And If you think you can break me, baby you're crazy.
I make my own sunshine.
Hey! Let’s make a rainbow. Look for the pot 'o gold.
I’ll show you how to keep it nice and easy.
Even if a cloud starts forming on my lovely day,
there’s nothing, NO nothing that could stand in my way.
It don't matter if it’s rainin’, nothing can phase me.
I make my own sunshine.
If you think you can break me, baby you're crazy.
I make my own sunshine.

Seriously. Is this not you!? No matter what is thrown your way, you just deal. And you usually deal with a smile on your face (especially when those seizure medications aren't messing you up). And, because you smile, it makes me and lots of other people smile too. You absolutely make your own sunshine. And nothing can stop you. And you help me to make my own sunshine. In fact, you are a big part of my sunshine every day, Miss Leah. 

I just love you. 

A lot.