Monday, December 30, 2013

Heart Hurt

I got a text from Jay about two weeks ago. It said just a few simple words: "My heart hurts."

That was sent to me while we were in the ER. Lainie had a seizure. There would be no weaning off meds. The label "epilepsy" would continue to be tagged on her IEP, medical records, on her. And with each additional seizure, the hope that she'll outgrow the seizures fades into history.

I learned these past few weeks there are a few quick ways to break your mama's heart. And my kids have tried a few of them.

1. Hurt. This is a photo of Natalie on the way to Children's Mercy to try to diagnose her headaches. Not sure of a diagnosis, but at least the headaches stopped when they treated her pneumonia, which we didn't know she had at the time. My baby girl has looked like this on and off since Thanksgiving.

2. Grow too fast. John learned to pull himself to a stand and creep along with one hand while being entertained in Natalie's hospital room. The awesome staff at Children's gave us a (sanitized) exercise mat and two big padded rectangles to make a sort of confined space for him.

"I'm OKAY!"
3. Worry about everyone else. This was sent from the ER to let sisters and Daddy know Lainie was a-okay and back to her crazy Lainie-land ways.


Seizures are our monster. Hey, at least it has a name. It is always lurking the shadows, always scary, bringing on nightmares. And just when you think you have slayed the monster, he returns.

But you know, I think we've gotten "okay" with them. When Maggie had her seizure back 8 years ago, my response was a loud F-bomb. Lainie's first one drew a sh**. The next one a damn. And so on. We didn't even cuss with this one. Just told Jay to get her med, kicked the other girls out of the room, and took care of her. Our acceptance of a seizure kind of hurts my heart.

Apparently, it hurts Daddy's heart a bit, too.

1 comment:

Mandy Gramkow said...

Tears as I read this heart hurts for you guys too.