Wednesday, February 18, 2009

3 Legged Disaster

Oh... The Relay. A 199 mile relay starting in Calistoga and ending in Santa Cruz filled with 5-8 mile legs that are all levels of intensity from flat across the golden gate or straight up hill getting into santa cruz. Family friend and coworker of my dads, mark s. thought up the idea of running it as a way to raise money for Batten Disease Research. The idea was so exciting! I should say, Is so exciting. The teams of runners have been growing each year since. There is even a team of girls walking this year. It went from Catie's Cops to another diagnosis making it Catie & Annie's Cops to more team members making it Catie & Annies Cops and Firemen and this year we have dispatchers and family friends walking. Maybe we should stick to something simple so we can actually fit the team name into the registration paperwork this year? like, THE RELAY haha.
Every year its so overwhelming to see how many people care. The group of people running and helping with driving, volunteering at different stops along the way etc. Its like getting a massive hug that squeezes so tightly that you feel as though you can't breathe. Every year! I love it.

The only reason I even thought about the relay was because Mom mentioned the dates to me yesterday. It has been on my mind for a while though thanks to my deep hate for craziness and lack of organization. The fact that the thought of driving down to santa cruz the saturday of the relay with all of my sisters, stressed mom, nonni and a car full of groceries makes my heart rate RACE might simply explain what the weekend is like without the need for details. It wouldn't be as crazy if the girls didn't have batten disease, but then we wouldn't be driving down anyway right? so this year in an attempt to simplify the weekend for everyone i suggested driving catie and annie down sunday for the end of the race. A brilliant idea if you've ever been a fly on the wall saturday night. I shouldn't care, but I do. Maybe its the control freak part of me. No I know there is more to it than that.

I'll back track since there is a reason for my anxiety and panic attacks over a trip to santa cruz.
I was 12 or 13 making Catie 10 or 11. She was completely blind and obviously slowing down but we didn't have her diagnosis yet so for all we knew she was JUST blind. psh. Being her sighted guide majority of the time(or at least in my world, it feels like it, i'm sure i'm wrong) I knew there was more to it. I didn't have a clue as to what but just cause your blind doesn't mean you can't memorize a song that you are singing. My mom paid to help her learn her songs, like a teacher ya know? and would get so frustrated because she couldn't memorize them and I didn't know how to help. Or her eyes. they used to roll and blink funny. No one else noticed it til months later when the became very obvious and she started having gran mals. anway, there was this event every spring with our homeschool group. It was called field day. A day that we all spent at a huge park in suisun and we'd all be divided into teams and play relay games and the winners would get a prize bla bla bla. I never told anyone but kyle about this day and how much it has affected me. I was so excited to go to field day, hoping i'd get put on the same team as my junior high crush and my closest friends. I did have a feeling I'd have to be caties sighted guide but hadn't mentioned it to mom. I had hoped that if I didn't say anything than I'd get out of doing it. I was always her guide at events, at least it felt like it. Church picnics and shopping trips. Sure enough, when we got there mom told me that she talked to Mrs Scwartzel and told her that catie could be on my team so I could help her. I was so angry, but felt so guilty for being angry that I didn't say anything other than "ok."
Now think of the last relay you played in. Not running relay but kid relay. It involves tossing water baloons back and forth to people, running through obstacle coarses with something in your hand, running through tires on the ground. How the HELL is a blind kid supposed to do that?! and how the hell does her sister who is her same size help her. Then throw in a bunch of controling and over competitive homeschool kids and you've got yourself a day that will scar you for life.
I did my best to get catie through the different obstacles but then finally we got to one that made me lose it. I still lose it when i think about it. You ever want to see me cry, mention the 3 legged race. They tied caties foot to mine and we had to race another team to a pole and back. I was trying so hard to explain to catie how it worked and what to do but she couldn't cognatively grasp it. "left, right" means nothing when you don't know the difference. We fell over a few times, and i couldn't even talk to her because of all the cheering, she started to just shut down from being overwhelmed. If you know batten kids you know that noise and craziness is too much for them. I remember looking at her when we were on the ground and she had the most determined face, like she wanted to keep going but didn't know how and you could see the fear and confusion in her eyes. She was squeezing my hands so hard trying to pull herself up. I can actually remember it hurting from her fingernails. I finally quit. I started crying and told one of the kids to go get my mom. I was done. it wasn't fair, she couldn't do any of it, i couldn't participate and the other kids were getting mad that they were losing. If only i could print the picture of her face that is embeded in my memory of the day. The thing that sucks is I still feel so guilty for being mean to her that day. for quitting and making her go hang out with mom instead of telling the other kids to go stick their fingers up their butts while we took our time.

Sometimes, when you try to save the world for a person that appears to need saving, you yourself are the one in need of a floatation device. Like when you're flying and they tell you in case of an emergency put your yellow mask on first. Every time they say that i think to myself, "are you crazy? what if catie was sitting here, she'd need it immediately!" EVERY TIME.

All that to say, the weekend of the relay can be rough for Catie and Annie. There is so much excitement and craziness. They don't do well when they are taken out of their normal world of eat, school, nap, eat sleep. The thought of them not doing well makes me not do well and that is why being the control freak that I am, offered to drive them down seperately on sunday so that they can enjoy the end of the relay with everyone without the 3 legged race-like day of driving.

I was asked to join the team of walkers and wanted to say yes so badly. I've always wanted to participate and always have the excuse of being too out of shape, or needing to help mom. Truth is I would feel like I'm not helping the girls by running. I'm gonna drive them down this year. Someday when they are gone though, I'm going to buy some running shoes and I'm gonna run it. For myself, not even for Batten Disease. It will be my "field day" or "homeschool relay" that I never fully participated in as a kid.

man the baggage. I'm almost positive that if I could let stuff go or at least talk to a professional that could teach me how to deal with it properly then I'd lose some weight without having to eat meat and veggies only.
I know that God gives us the life that we live, that He ordains each step even the ones that include others peoples feet tied to yours. It still hurts though and not because I don't have faith, but because God gave us emotions and He gave me ALOT of them.

Friday, February 13, 2009

Sweet Tooth


One of my Valentine Cutie Patooties. I can't wait to open a bakery some day.
Love At First Bite Baking Co.
oooooh yeah baby

Wednesday, February 4, 2009

A Song for Anne Marie


Why'd you have to go so soon
Don't you know that I need you
And I miss you
Yeah I miss you
Scary thing is you're still here
But your souls been gone for the past few years
And I miss you
Yeah I miss you
You come around now and then
But when you're here I don't pretend
That you're here to stay
'Cause I know in moments you'll slip away
And I miss you
Yeah I miss you
I can see your smile in your blue eyes
And I can hear your laugh in between your sighs
I know you want to leave for good
If you had the chance I know you would
But I'd miss you
Like I miss you
Why'd you have to go so soon
I can't wait 'til I see you

Tuesday, February 3, 2009

Happy New Year!









Annie came home from school on Monday the 26th with a paper dragon that she had colored at school. She informed me that that day was the Chinese New year. We talked about our cousins that live in China and she told me all about the things they must be doing to celebrate. Then she asked me when our new years is.
quick back track: Uncle Frankie was in the hospital on new years eve this year. Anxious to catch a break from the stress of everything, Tony, Kerri and Amy all went to friends houses. Dad worked that night so an exhausted mom decided to go to bed at a normal time. Anyone in their right mind would put Catie and Annie to sleep rather than stay up all night waiting to watch the ball drop for so many reasons.
Back to the story. When Annie asked when our new years was I just told her its not for a while. She is way too smart for that. She was also VERY upset because the kids at school told her that we had already celebrated new years. The nerve. She could not believe they would say such a thing! She argued with them telling them it had not come yet and in her little world, it hadn't. Friday nights are sleep over nights. Annie either stays at our "hotel" aka apartment or I stay the night at the house. Trying to think fast I told her that New Years Eve was friday night! She was immediately excited and ready to plan. "We have to have shrimp with the red stuff, vegetables and ranch and toasting juice." She also made sure I had hats and poppers on the list. Pretty soon Catie was planning too. All throughout the week they would ask how many more days until the countdown and then finally it came. Mom continued to remind me that it isn't new years until the ball drops. How would we pull that off?? YOUTUBE.COM haha We watched a movie and ate all of the necessary new years eve junk food and then we watched the ball drop on the computer since the tv wasn't working all of a sudden. :) They were both in their beds and asleep by 8:00. Operation New Years Eve was a success!
It was a blast and I don't plan on ever forgetting it. I was reminded again of the beauty in their simple life. Its heart breaking to think of all they have to struggle with but nights like Jan 30th remind you that its not all bad. That sometimes they are better off not realizing they slept through new years cause their uncle was in the hospital but being happy to listen to someone countdown from 10 to 1 and blow some horns. Its simple happiness. I love it!

Monday, January 19, 2009

First Time Ever I Saw Your Face

The first time ever I saw your face, I thought the sun rose in your eyes.
And the moon and stars were the gifts you gave,
To the dark and the endless sky, my love.
And the first time ever I kissed your mouth,
I felt the earth move through my hands.
Like the trembling heart of a captive bird
That was there at my command.
And the first time ever I lay with you,
I felt your heart so close to mine.
And I know our joy would fill the earth,
And last till the end of time, my love.
The first time ever I saw your face.
-Johnny Cash
Went to Emeryville with the love of my life today. Walked bay street hand in hand, loving every second of it. We talked about life and how quickly it passes by. Talked about our past and favorite memories and hopes for our future. Like vacations we'll go on, babies we'll raise and albums we'll write and record. Talked about how fragile life is and how soon it can be gone. How we want to make the most of it and enjoy even the not-so-fun parts the best we can since we have each other and a mutual faith in God. To finish off the night, Johnny Cash and Carb free dinner. Now thats the life....

Thursday, January 15, 2009

A Day to Remember

We celebrated Uncle Frankie's life today at his memorial service. It was beautiful. The slideshow was my favorite part. pictures of Uncle doing things he loved the most with people he loved unconditionally. I think the only thing he would have done different was maybe have his best buddies do a jam session in his honor and cut the baptist preaching time in half. haha He never could sit still for very long... 
As I was sitting waiting for the service to start I saw so many family members there to show support. Still, I continued wondering where Uncle was? Silly me. Like a little kid, I was looking forward to seeing my goofy uncle that would make me laugh on a day as sad as today. Unfortunately it was his death that made the day so sad. I still can't believe its all real. 
I have to say I am a little jealous. He is in a place that I can't even wrap my mind around with My uncle, my Nonni Eleanor and many more of our loved family members. I still can't understand why it was him that had to go other than the fact that I definitely needed a wake up call. A confirmation of my faith in God. A greater appreciation for my family members. A larger sense of safety and smart choices. Seems like when he was here I took him for granted. Now I'm' learning so many lessons from him that I never thought would be the kind he would teach.
He is already missed so greatly. I know it will definitely hit me hard on my moms birthday or any of our birthdays. A guaranteed hang out time he would rarely miss. Or this summer when we are in his backyard swimming and he's not there spraying us with the freezing cold hose. 
I can't wait to hang out with him again someday. 

Monday, January 5, 2009

Uncle Frankie





You'll be missed. May you rest in peace. Love you.