Wednesday, November 23, 2011


This is the time we remember what we are most thankful for. And I could give you a list as long as the world is wide. I am thankful for so much. From the shoes that cover my feet to the roof that doesn't leak that is over my head. Thankful for one clogged toilet because it isn't two. I am one who does her best to find the light in dark. It is how I am wired and it is one of the few things I like in myself.
Last night was a rough night. Lily had a seizure in PT, then fell asleep and slept hard for over an hour. She woke up just to have another seizure. Then she didn't want to eat and didn't go back to sleep very well. So when Andi Jane whom I always let pick a book for me to read from each night before bed asked for some odd reason to read from Lily's baby book, I was like really? "Really Andi this is what you want me to read" and she said "yes I want to learn more about Lily". OK so I read.
I start with the easy stuff, how mom and dad met, how my pregnancy was, then her birth. Then the stupid milestone page that was practically blank. I remember not being able to wait to write the dates of crawling, pulling up, walking, saying mama and dada. But those spots were blank. I trudged on. Reading about her first holiday being Halloween and she was hospitalized at that time. I read her dr. appointments that were supposed to be about well checks and ear infections, yet this was EEG, VEEG, MRI, Pet-Scan, etc. It was awful. Then the last page was where I wrote a letter to my one year old daughter. One who I still thought would still graduate from college and I quickly gave Andi a kiss good night and went into the kitchen and cried into my hands. I sobbed for what I had back then that I don't have anymore and that is hope. I hope this isn't taken wrong, I still have hope that there will be a cure, I still have hope that the future can change. But I am also not still hoping for a life that isn't going to be Lily's life. And it is sad to look back after 8 years of change and see what you thought it would be and it isn't.
And while this is all sad, admittedly sad, it's not hopeless. And I am not thankless for sucky things. Without Lily in our lives who knows where would I be. Who'd I be. What priorities would I set and where would my compassion levels be? I don't think I was ever not a compassionate person, nor an unloving person, or a person with ill set priorities, but I do think I am now a person of more. More love, more understanding, more heart and more passion. So I am thankful for those blank spots on that milestone page. As much as it sucks, I am thankful for them. Because it is those pages that has shaped our lives, our homes, our priorities and it is that precious girl who never has to fill in those blanks that I am most thankful for.
So hug your babies, hug your family. Be thankful for the people God placed in your life, in your family because there may be times you wonder why God set old Aunt Edna in your life and at the seat next to you, but maybe if you listen to what she has to say, even if it is after she tells you she doesn't like you hair style, she may have something powerful to say. Or maybe God just wants you to practice your patience.
Happy Thanksgiving. I know I have tons to be thankful for, I am sure you do to.

Monday, November 21, 2011

Let's Shop!

I am not sure if I made an offical announcement but now is a better of time than any.....
I am now a board member for the IFCR (International Foundation for CDKL5 research)!
I'm thrilled to be a part of these special woman doing something to make a change for the future of CDKL5. I won't push things on you in every post. You all know that is not my style. But I did want to let you all know we have a store that is currently selling hand-blown ornaments that are stunning! Each one is etched with either hope, love or cure cdkl5. It is a wonderful way to support our foundation and honestly they are beautiful ornaments!
We also have other fun items that show your support!
Anyway, just check it out :)

CDKL5 Store

Friday, November 18, 2011

Viva Las Vegas

Vegas came upon us fast and hard. It was one of those are we going or aren’t we going. Where are we staying, who is going? My beautiful niece, Ariel, turned 21 on November 10th and since her 18th birthday she has been saying “we are going to Vegas for my 21st right?!” Well it was sweet at 18, and 19 and even 20 but we all thought there is no way she is really going to want to spend her 21st Vegas birthday with her Mom, her aunt, her grandma and her uncle. There was just no way. Yet as the time got closer she got pushier and it came to the fact that she really wants us to go. Isn’t that so sweet? I mean I have to be honest here, those weren’t the top VIP invitees when I turned 21 a couple *cough* few *cough* err several years ago, ok over a freaking decade ago. But when push came to shove we were going to Vegas. My stomach was in knots, I didn’t really want to leave the kids. We don’t have money oozing out of us and we had a mini disaster of sorts happening at home. Hot water heater died, toilet was totally clogged and the disposal took a poop (thankfully not in the clogged toilet). We were coming off a not so great October. Ok a poopy October. We had a lot of sadness. Lost dear friends who after an emotionally draining situation decided to move back home to Oregon, Lily’s tonsillectomy I swear took years off of me. I tried to wean Lily of Banzel and she had the worst seizure days we had seen in a long time. It was just not a good month and I guess my heart wasn’t into viva Las Vegas. But since Grandma Cheryl bought plane tickets came down to watch the kids, which was so sweet of her, and Ariel wouldn’t take no for an answer we packed up and drove to Vegas. In one car we had Andrew, my sister and I coming from the Valley and in another car we had my mom, Ariel and her boyfriend who met up in Flagstaff. We all met up in the Bellagio lobby after a long drive and looked around at what had to be known as brideageddon. It was after all 11/11/11. I was tired, standing around watching the nuttiness of Vegas and thinking, I am not in the mood for this. It didn’t help that it was nearing 8pm and we had no dinner reservations and getting in anywhere wasn’t working too well. Eventually we ended up at an hour long line for a buffet to where you pay lots of money and still get treated poorly. It semi felt like you were guilty til proven innocent on paying and being sat, but its ok. We finally sat. We finally ate. Then we went looking for a place to sit and have our first drink. And then shall I say the night took on a whole new tone. We met up with a friend/ family member (married to the sister of our sister in law) who lives there and he got the drinks flowing. He was quite the tour guide and I’m not really sure all we did but I do know we didn’t get to bed until after 2am. 3am for us AZ folks. And Andrew did some planking on the streets of Vegas. He even planked next to Stitch. Yes Stitch from Lilo and Stitch. We woke up at a ripe 7am just giggling about the whole previous night, of course very quietly since we were sharing a room. Andrew and I decided to get breakfast and that is when the interesting things seem to start to happen. People are still up. From the night before! How do you have the stamina? I thought we were rock stars for making it til 2am. I saw girls falling all over each other. One couple walking with the guy pulling the girl by her hair (let’s just say not in an abusive way) I saw the walk of shame out of hotel rooms. We saw gamblers dressed in their best not even yawning. Not too many were in pj’s looking for breakfast, put it that way.
After we paid $50 ($50!) for buffet breakfast, by the way, I think if it is really “all you can eat” they should give you a hand stamp so you can come back. Otherwise you just have people like me throwing bagels, bananas and apples in their purses. Which came in handy to the homeless people, although the look on the woman’s face was like yeah I guess I’ll take your banana, I thought it looked tasty.
We go back to our room after 9am and figure Ariel and her boyfriend slept long enough. We woke them up. I wonder if that is the joy Oli and Andi get when they wake us up at 7am on a Saturday morning. Ariel and I head down for breakfast with the girls. (no I didn’t eat twice, just went for the company, but you can keep on judging me if you’d like ;) but what was to be a day with the girls went from breakfast at 9am to all of a sudden it was 7pm. Seriously how does that happen? I mean. We didn’t shop, really. We didn’t gamble, really. It was the oddest thing. We had so much fun. I guess when you’re up $17 on your mom’s $5 in penny slots; life is going your way. Don’t even ask how my husband was doing on the other side of town loosing on black jack with Tanner (Ariel’s boyfriend). It was a girl’s good day and a boy’s bad day. When we finally met back up, us girls giggly and tipsy we were met with a bit of the grumpies. Then changed and back out for dinner. But then mojo was gone. Done. We all yawned through dinner and made it all back to our rooms and were all fast asleep by 10pm. And by morning we were packed up and heading home.
I’d have to say the highlight was that day with my sister, mom and niece. We were all so relaxed and just enjoyed the day. My mom and sister are a bit more planned than my niece and I yet they just went with the flow. And we flowed all day all over town. We went to this bar called Minus 5 and it was all made of ice. It was freezing and so fun! I ate my cup made of ice. I mean how often can you eat the glass that held your martini? Who else could resist that?
When we finally made it home, that is a long drive, we were greeted by a Thanksgiving meal that was Andi and Grandma’s surprise for us, and lots of hugs and kisses. It was a great way to come back home and we were so glad to be there.
I do have to say though if I could do a little soap box business. Ladies, you do not need to show the world that you have a short skirt. Strangers should not be praying to God you are wearing underwear. Also we can tell your boobs are big, you don’t have to show them like that. A little to the imagination is sexy. The goal is sexy not slutty. I get it, its fun to dress up, it’s Vegas after all. But when your skirt is an inch from your hiney and you are tugging on it all night long, you know that isn’t sexy. Any girl can find a guy, but it is quality that matters and fishing for a man in that outfit will get you noting but crabs. I meant that figuratively, but it could go literally as well. And getting that drunk is not safe. Not when you two girls are all you got, if you are both falling over each other on a bridge and a strange homeless kid is trying to “help” you, that is not safe. You have to work together, protect each other. Mom types like us can’t stop you and make sure you are not making a mistake walking with this strange guy taking you back to his hotel room. So yes its Vegas, dress sexy not trashy, get tipsy, not wasted (unless you have a safe friend) and enjoy your time. Don’t take home anything besides some corny souvenirs and a designer handbag.
Ok done, had fun, glad we went, but more so glad to be home!

Planking by Stitch

Wednesday, November 16, 2011

Family Fall Photos

I can't brag about my friend LIZ enough! We showed up with a sleepy Lily and well a 2 year old Oli. It was about 90 that day yet I made us pretend it was in the 70's and we left the session thinking no way we got anything! But in true Lizzy fashion she surprised me with some stunners! Now there aren't a ton, but the ones we got are priceless.

Love this one!

Working with (not against) a sleepy Lily


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.

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