Saturday, November 5, 2011


I heard a quote in a book that made me stop and go back and play it again. I listen to books on my ipod on my way to and from work. Now I have been told that listening to books is “cheating” or that “it doesn’t count” and both those comments drive me nuts. I listen to books for pleasure. I am not in school. I have no extra credit due. So who am I cheating? What doesn’t it count for? It’s not like watching a movie and doing a book report on it. As an adult who enjoys listening to books because I have far more alone time in my car than ever in my home, for me yes it counts, and no it is not cheating.
Ok now I can continue, awhile back I was listening to a book called Winter Garden by Kristin Hannah, it was a beautiful novel that took real history from WWII and put it into a fiction about a family with a mother who experienced life in the Soviet Union when they were invaded by Germany. The book gets dark at times, because well it should; it was depicting times that most of us could never fathom. The line that came to me was “none of the mothers looked at each other, it hurts too much to see your own pain reflected in another woman’s eyes” and that was the line I needed to listen to again. And again. Maybe nothing too profound to everyone, but it hit me hard. I have been a special needs mom for over 9 years now. We never got that period of time where we thought our life was normal. Ok maybe those 3 weeks before her first seizure, but there was something not “right” in Lily’s eyes from birth so really we’ve never had a moment that everything is perfect with our daughter. In the beginning we had good attitudes. At least on the outside. We’d smile. We’d deal with each seizure each time of each day; tell people it’s our lot, it’s our blessing. Yet on the inside we crumbled when each disappointment hit. I went to a support group yet rarely did I share my heart. Did I let my tears show, let me just say the difference between me at 23 and at 33…. A lot more tears. I used to be afraid to show them, so I showed an exterior of smiles and bliss and complete acceptance, yet on the inside I didn’t feel that. I wanted my baby to be “typical” I wanted to her talk to me. I wanted her seizures to just go away.
One day I remember watching a video someone showed online to ask if it was a seizure or not and the minute I watched another child have a seizure that was not my own child my stomach felt like I had drank curdled milk, I wanted to vomit and I closed the video. I wanted to be a support for that mom, but I couldn’t do it.
Another instance was watching Extreme Home Makeover and there was a family with a severely disabled boy with epilepsy and I was watching the mom talk about how hard it is to care for her son as he gets older and I just sobbed watching this woman’s story. I sobbed as I watched me from the outside. I was overwhelmed with pain for her, yet looking back I know it was pain for me. Pain I never felt I was allowed to show, I could feel for this woman.
And much more recently last year when I went to Nashville to get away from my mess of a life, a marriage barely hanging on, I had to get away and Nashville was the place to go. My good friend Wendy lives there with her amazing family, her oldest daughter is the same age as Lily, we met online talking about how much seizures suck. Well on that trip Langan had a bad seizure, a long seizure that Lily used to have but it’s been years since I have seen them like that. Here I was feeling so proud and maybe a little jealous at how well Langan walks and gets around and feeds herself, but seeing her have that seizure and watching Wendy stroke her hair and comfort Langan telling her she was ok, I just couldn’t watch it. I went to go find her a hair brush. Yes me in my take action skills, getting a hair brush. I probably looked like Vern on Stand by Me. That is all you brought, a hair brush? Vern you don’t even have any hair! I brought it for you guys.
Sorry if that makes no sense to some/all of you.
But it was another instant that I couldn’t bare to watch.
In my life I can deal with a lot. A lot. But I simply cannot watch it play in front of me on anyone else’s face. When we lost Emmie last year, I was devastated beyond devastated. I think it was the worst death I had ever been around, yet I wasn’t a part of the family. It was a strange feeling because I felt I didn’t deserve to hurt so much over someone else’s loss. But watching her parents, dear friends of ours, live this hell was so hard. I wanted to take that hurt away from them. I wanted to make a world that small coffins aren’t ever made because there is no need, but because I can’t do that I just wanted to look away. It hurts too much.
“None of the mothers looked at each other; it hurts too much to see your own pain reflected in another woman’s eyes”.
I sit here starting at my screen drinking my coffee and ignoring the fact that even though I woke up at 6:30am on a Saturday just so I could spend some quality time with a word doc I already hear Oli yelling that he wants out of his crib. The same crib he knows how to climb out of, but he doesn’t until I say he can, I love that fact. You think it went like that with Andi Jane? Oh heck no.
So I digress, I look at my screen asking myself, what are you going to say next Kim? You have to pick this up. Find the positive, end it where you typically do. Where is the humor? But I have nothing. That quote mixed with my life experiences is all I got. It should go on my gravestone because no truer words have been spoken to me. My truth read in a book. No the book wasn’t talking about seizures and wheelchairs, it was putting children on a bus away from their parents sending them away to be “safe” during WWII. But it’s all the same. When you see your hurt played out in another’s eyes. Especially in another mother’s eyes, it breaks you.
So if we are experiencing a similar pain don’t be surprised if I say a lot of jokes, I skate around the issue and do my best to never discuss it. If we do, don’t expect a lot of eye contact. It just hurts too much.


Dawn said...

Wow, just wow. I felt that way when I first met a group of women that also had daughters' with Rett Syndrome. It was 7 months after the diagnosis and they were all sharing stories of their girls. I practically fell out of my chair in my desperate attempt to leave as quickly as possible then found a quiet spot to gasp for air. I like how you left this entry, just honest, no need to play up the positive. :)

Tiffany said...

Tears, tears, tears... you are a great writer. Love you guys:)

Shannon said...

Oh Kim...I could have written that myself. Every word just rang so true.
Thank you for sharing and for opening up your heart and your lives. Yours was the first blog I read after Gage's seizures started...I remember reading about your Lily and for the first time I didn't feel so alone. I felt like I had met a mom that I could finally relate to.
I know that's a bit off topic but it's something I've always wanted to say to you. In a lot of ways your blog saved me. So thank you.
Sending much love your way.

Melany aka Supermom said...

Oh Kim. I wish I could just give you a hug. I don't know what to say and I can't say "I can imagine what you must be going through" because I don't. I don't know how this must be for you. My heart goes out to you. (((hugs))))

Nicky said...

i feel the same way. i find i definitely go towards the "flight" side of "fight or flight".
and i second shannon. before your blog, i didn't think there was anyone out there who i could relate to. thank you.

Popular Posts