A Challenge

So I think it's about time I introduced my sister and a huge chunk of my life to this blog.  I'm fairly certain that most readers know already about my sister Cathryn and Ataxia-Telangiectasia, but the thought crossed my mind that maybe some of you don't!  And what a HUGE part of my life to leave out!  I'll try to be brief and thorough at the same time as an introduction to what we did this weekend!

My 18 year old sister Cathryn has a rare, degenerative disorder with no cure.  Without getting too in depth, the disorder affects the cerebellum and over time, A-T kids lose muscle control.  They are also plagued with a crippled immune system like an AIDS patient.  There are so many intricacies of this disease and so many struggles.  If you can imagine every muscle in your body slowly quitting being obedient to your brain... then you might have an idea.  That affects reading, writing, walking, talking, breathing, coughing, eating, swallowing... and many A-T kids do not live past their 20s due to something relatively simple such as pneumonia or cancer, which is very common.  Cathryn is currently doing about average for an A-T kid, bound to a wheelchair consistently, getting nutrition and liquids from a feeding tube, and getting sick about once a month.  But praise Jesus, she has hope in eternal life where she can sing, dance, draw, and jump up and down in Heaven.

It is not really possible for me to put into words the emotion that comes with having a family member who is "handi-capable" as Sue Sylvester would put it.  (I know, how nerdy).  I wish I could eloquently describe the struggle, the heartache, and the guilt, but it is too deep for words.  My whole family suffers together, each day bringing a new set of challenges.  My mother especially is one to be praised, prayed for, appreciated, and loved.  She is Cathryn's 24/7 nurse, nurturer, teacher, and so many other roles, and her whole life is dedicated to taking care of her daughter - a long and hard journey.

In 2007, a family friend of ours decided to take action with the A-T Children's Project to help find a cure.  He took upon a feat of running 63 marathons in 63 days.  Just in case you didn't know, a marathon is about 26 miles.  He pushed a stroller everywhere he ran with a sign honoring an A-T kid (there's only about 500 in the US) or sometimes with the A-T kid actually in the stroller!  Again, I cannot even begin to describe what an amazing thing this was to the A-T families.  We are such a small community, and no one even knows about the disorder, let alone wants to help.  Tim ran across the US, increasing awareness and giving hope to so many people.

A documentary was made called "Feat" and it not only follows our friend Tim Borland, it provides an excellent picture of what A-T is like by interviewing families.  Our family was one of those families, especially as it was because of meeting Cathryn that Tim was inspired.  It's been screening for about a year.  The premiere last year was while I was in Israel, so I was unable to make it, but Friday there was another screening in Monterey, and I was finally able to go!

 this is Grams Achilles, Mom, Cathryn, me and Mr. Man.

this is Mr. Man semi-reluctantly posing with the movie poster for me.

For more about the Feat Move go www.featmovie.com.  It will be coming to video very soon, probably in the next couple months.

I realized something this weekend going to the screening and talking to Tim Borland for a while:  I have been scared to be open about my sister and our struggles.  I could be so much more "gung-ho" about the fundraisers, about increasing awareness, about the whole cause!  It just hits so deep sometimes that I shy away from it.  I've been able to be away at college, living on my own, and putting it out of my mind to an extent.  I am truly ashamed that I let my own deep pain get the best of me and prevent me from being a bigger part of a greater cause.

Therefore I am telling you about it.  I am challenging you to be interested.  I am challenging you to be a part of something bigger than yourself, as cliche as that sounds.  Go to www.atcp.org and read up on the disorder; be aware.  I am really only asking you at this point to be interested, because I know how easy it is to not care.  I am constantly inspired by friends of mine who are dedicated to helping people, whether it's Haitians or Chinese orphans... my cause is A-T.  Join me!  If you are interested in doing more than just caring, there are many ways you can help out if you are so inclined, buying A-T paraphernalia off the website, being a part of the Disneyland 5k and half marathon this coming September, or even making a donation.

I am soon hoping to put up the text to a booklet I helped Cathryn write last week that you see in the picture below.  It is a magnificent testament to the struggle of the disease and how my dear sister holds on to Jesus as her Rock and her Hope.

I don't like mushrooms.

So I'm starting to despair about the fact that we will most likely be internet-less when we move in 1 1/2 weeks.  It's amazing how empty a computer is without internet to me.  And how lonely it is.  I got a taste of this the past couple days when our landlords fried their wireless router and didn't get it fixed until this morning.  Of course the two internet-less days happened to be the days that Mr. Man is gone at school all day long!  Turns out I really rely on the internet to feel connected with people (no duh).  I moved far away from my close friends, and the way I keep in touch is on the 'puter!  When we move to Sac, I will also be farther away from my family.  Time to pray that our job/money situation improves drastically enough to afford internet.  Or that my friends magically move to NorCal down the street from our new apartment. :)

Speaking of money, I hate it.  I hate how hard it is to come by.  And to be honest, I hate how hard it is to separate money and material possessions from happiness.  That's something Jesus and I are working on right now, and it's definitely a struggle.  But on top of that ongoing struggle, we have little money for the things that we actually need!  Eeek.  The Lord has been SO faithful to us and has provided for us for the past 3 1/2 months, but it sure is feeling thin these days.  I understand that I need to trust Jesus, it just helps me to share the struggle "out loud."  If you are so inclined, please pray that the Lord will continue to provide work for Corey and I and that we will not have to pull our hair out over the monthly bills.  I'm sure many other people need the same prayer.

But really, economy, will you ever look up?  I mean, what an awful time to be a recent college graduate and a newlywed in this society.  Not that I regret a thing, it's just hard to have hope when everything is so desolate.  I should have been a nurse... or an accountant.  Not really, but the job security would be nice.  Jesus knows that I love music, that it is in my soul, and that it's what I'm meant to do.  Just His timing, not mine.

What a joy it is to have hope in eternity, though!  This world and this life is only temporary!  Imagining life without this hope is so desolate, no wonder depression abounds and the only thing that "fixes" it is medicine.  I have Something much greater than medicine!

And how blessed I am to have such a wonderful husband.  He is so patient and helps me remember to trust Jesus and hope in things not seen.  I am so proud of how hard he is working in school!  There has been a lot of homework, commuting so long has been rough for us, but to hear him brag about his cream of mushroom soup when he got home at 12:30am last night made me so happy!  ... even if I was half asleep.
...and I don't like mushrooms.

LBP

OK, ok, so I play some video games.  My soulmate loves them, therefore I love them.  But not to the same degree, of course.  And he really does like good games.  He doesn't own any of those shoot-em-up games with guts spilling out everywhere... or big nasty bugs attacking you... or zombie scariness.  He only plays those at friend's houses, haha.  Most of our games are Nintendo, like Super Mario Bros, Animal Crossing (my favorite!), WiiFit, Guitar Hero, and a few others. 

Our most recent acquisition however, is for our PS3: Little Big Planet.  This is not Nintendo... there's no Mario and you can't shake your remote to make you jump higher... instead you get to be a little sack guy.  Lucky for me it's still not entirely 3D, and I can still control the little guy.  (You shoulda seen me try to play Halo once.  bahaha!)  The entire setting is made out of fabric and cardboard, and you go around the world conquering levels.  The best part of the game in my opinion is that you get costumes and things to dress up with.  You can change the fabric you're made out of... colors or patterns, add hair, add clothes/hats, choose your eyes, even have a tail if you want.  Being a girl, this especially appeals to me.  I think I am currently a little indian girl with a feather headband and a fringe dress... and my fabric has wild stripes in fun colors.  The level we were playing last night was in Mexico, and we were trying to find some guy's uncle hiding in a mine?  (Of course, all the animals and the people in the game are made out of fabric and moving parts)  So far I actually feel competent enough so that Corey isn't completely bored to death playing with me.  I still die 3x as much as he does, but oh well.  I have really been having fun playing it!  It's an extremely creative game.  Eventually we can create our own levels with items we collect in all the worlds. 

My only bad experience so far with this game was the level in South America with scorpions.  Anyone who knows me well knows that I am freaked out beyond all reason by scorpions (and that person who threatened to put them in my bed more than once traumatized me for life).  It really is unfounded fear, I have never had a bad experience with one, but nevertheless, it is a very serious fear and I am second guessing whether I should put it on the internet.  There are some psychos out there.  Luckily I don't think psychos read my blog.  (I hope) Anyways, I had to put my remote down and cover my eyes and Corey's little sack guy (he has antlers and a tux and a magic wand) had to drag me in a cart past that part of the game.  Sigh, he's so patient.

Other than playing Little Big Planet, we haven't been doing very much!  We move in two weeks, yay!

And I am totally addicted to Dancing with the Stars.  Evan Lysacek must win.  And Kate Gosselin, I'm sorry but you really can't dance.

Here I sit...

...next to my loving husband as he works on his homework. He is currently defining a huge list of cooking terms, such as the official meaning for words like "dice" and "broth" or foreign words I've never heard of like "brunoise" or "chiffonade." Of course most of the foreign words are French, we know how the French love their food. Even after he tells me what they mean, I don't remember, but I can pronounce it all! He had his first classes last Monday and Tuesday (ALL DAY LONG) and his comments indicated that he was not discouraged from loving it or being excited, but it was going to be a LOT of work. He has night classes both nights until 11pm, and right now he is commuting over an hour one way, so I basically don't see him Mondays or Tuesdays. So far he has a wild story about one student cutting the tip of his finger off... ew. Culinary school is not for crystals. I'm praying every day that all of Corey's fingers stay intact. He's made some potatoes this week, practicing the special cuts. It really is quite exciting.

In other news, I decided to stay for now with my current job (DMH Mechanical). The job market is... awful, to pick one adjective, and I will not have worked at DMH for one year until July. Most administrative jobs require at least 1 year of experience. So while I am only working 20 hours a week right now, I have the assurance of returning to full time when the summer heat starts up. You know, when stores and companies' air conditioning quits and their customers leave, they'll call us. I also have picked up one voice student (YAY!!) in Wheatland, and I am sure that I can aquire more because of my dad's choir and band students if I knew I could commit to being in Wheatland weekly. I have no networking in Sacramento to begin teaching lessons, and I can charge much more independently than I could with an agency. So all that to say that working at DMH while teaching lessons in Wheatland could work out really nicely. We'll see how it goes once we move in 3 weeks, get settled, see what kind of part-time job Corey gets, etc. But I am very happy to settle with DMH for now, I like working there and I like being good at what I do. It would be sad to have to learn another company and be "new" at a job again.

We had a wonderful Easter last weekend, celebrating with both mine and Corey's parents all at once! We played games and ate WAY too much food. I surprised Mr. Husband Man with an Easter basket full of goodies that I had been planning for several weeks. I had strategically hidden everything in the trunk of the car (there's nowhere to hide anything in this itty-bitty house) and when I woke up Sunday morning, I tried VERY hard to sneak out of bed, throw a sweatshirt on, slip on Corey's Rainbows and make it out to the car without him waking up. I made it all the way out to the car and back inside when I realized there was one more thing out in the car that I forgot, and in my process of sneaking out again, he woke up and looked at me in my jammies and sweatshirt and hood sneaking out the door and said "What on earth are you doing?" I pouted and said, "Go back to sleep and don't look!" then finished his basket. Almost made it. But he was a happy boy, and he didn't even suspect ahead of time that he would get a basket. :) Here is our first married Easter picture:

Yes, we both got haircuts. Corey had to trim his beard further than this picture for school. I'll admit I like the shaggy version of Mr. Man just a little bit better, but I s'pose keeping beard hair out of the food he makes sounds reasonable. And as for my haircut, I really wanted something that would help me look older, I am 23 for goodness sakes, not in high school. (I know you're thinking, "Be happy you look younger, you'll wish it was that way in a few years, haha"). Ba-humbug, I want people to respect me as a professional adult. I'm not sure if the haircut accomplishes this or not... we'll see.

Psychic Spring Hitchhikers

This is my current favorite wedding picture for your viewing pleasure:
(our photographers website here)



There's not a whole lot to report since my last post... Corey starts school in two weeks. He got his schedule, and he will be at school ALL day Mondays and Tuesdays (until 11pm). That will definitely be different! We are stoked, though. We are going to his orientation on the first of April and he gets his cool knife set and fun uniform, hehe. Our job situation is the same, but we quit the petitions job. It was just too much. Instead of relying on that income, I applied for unemployment because I am only working part time. It's temporary until I can find a real job, hopefully after we move. There are definitely hard days where it is easy to loose sight of the wonderful things, but the Lord is continually providing for us.

Also, I LOVE spring. I always forget how much I love it until it is here. I love the sun and I love tree blossoms. It's just such a hopeful time of year, what a wonderful time to begin our new adventure!

In our spare time, Mr. Man and I have been watching a LOT of Psych. We are humungonous Psych fans. And of course, we are still playing WiiFit... I love doing the Yoga. I wish I would have had it in college! It would have helped so much with singing!!

In other random news, I picked up a hitchhiker the other day. I have always secretly wanted to... I know, I'm strange... I was on my way home from work, and a very harmless lady was standing there with just her purse. I motioned her to come into the car and drove about 10 minutes to the gas station in Penn Valley and dropped her off there. It was rather uneventful... she talked about how her son wouldn't give her a ride anymore and something about getting outside. She had very slurred speech, so I'm still not quite sure of her story. She offered to pay me for gas when we got to the Chevron, which I guiltily pondered for a minute, but assured her that she didn't need to. What would be the point of picking up a hitchhiker if they were going to pay you!

The Next Chapter...

Well, I have been waiting to post for several weeks about some big new things, and I finally have the opportunity to! :)

Exciting thing #1: My husband is officially going to culinary school.

This is something that was lurking in the back of Corey's head for a while as something he would always love to do, and after he was having trouble finding work, it seemed like a nice thought. When he first mentioned it to me, I was a little surprised, but we started looking into it. We ended up picking the Art Institute of California - Sacramento, and we just got word on Thursday that he was accepted. Of course, we'd already had a meeting where we saw the campus, he'd been measured for a uniform, and everything was in place but the actual acceptance letter... therefore the delay in being able to tell the world! He is enrolled in the Art of Cooking program, which lasts for 5 quarters (1 year and 3ish months) and awards a diploma. After talking to some people we trust, we decided this was the best option to jump-start a cooking career for Mr. Man. We are SO excited! We are trusting Jesus to provide financially as we have confidence that this is His plan. Corey starts April 5th.

Exciting thing #2: We are moving to Sacramento!

Penn Valley to Sacramento is just over an hour. Therefore, for Corey to try to go to school there AND hold a part time job, we needed to move to Sacramento. This was only reiterated when I was moved to part-time at my job. The city will provide so many more opportunities! We went a couple weeks ago to apply at an apartment complex in the Natomas area (the nicer part) and we officially put on hold an apartment for move-in on May 1st! Unfortunately it could not be earlier because our lease here is not up until April. BUT we are SO elated about this apartment. It has a dishwasher, washer and dryer, DOORS inside the house, a REAL kitchen sink... It's one bedroom for an extremely reasonable price. The complex is gated with pools and tennis courts (which we are excited about) and even a fitness center. We can't see why we would ever want to move! Well, that's a slight exaggeration, but compared to where we are now, it's going to be paradise. So we just have to wait for two months... meaning for one month Corey will need to commute.

Slightly difficult thing #1 - My job situation

I need a new job! Especially because Corey will be in school, I need a job that will pay me well and that has benefits. We are currently living without health insurance and that is not comfortable! I have a grand dilemma about whether to look for work in Sacramento starting now, 2 months before we move, and commute VERY far, or to find alternate methods of floating above water until the move. So far, it looks like the latter.

Slightly difficult thing #2 - One of those "alternate methods"

For the last week or so, Corey and I have been sitting in front of stores asking people to sign signatures on CA petitions. We decided to do it because it pays almost $1 per signature, and we were assured we could make 400ish a week doing it part time. (So if someone asks you to sign in the next month or so, don't hate them) There are several problems with this, however... the first major one being that we hate it. I can pretend wonderfully that I like "sales" but I really really dislike it. I thought I enjoyed it for a while, but the pressures of persuading people to do something really caught up to me. Corey is not a people person whatsoever, so we are very unfit for this. Also, we pretty much don't like politics at all, judge as you will. So the angry voters out there try to argue with us about issues, and we really don't know what they're talking about. On top of all that, it's not proving to be as lucrative as we anticipated. Probably because we are bad at it. So do we quit? Or "suck it up, cupcake!"

Slightly difficult thing #3 - We are increasingly disliking our little residence.

The Lord gives us strength and I am grateful to have a place to live, but it just compounds our difficult situation to live in a place like this! We are fairly confident the neighbors (to whose house we are attached) are growing marijuana and it constantly smells. The walls are very thin and they have been doing work on the room with the shared wall to our place, so there is constant banging and we can hear everything they're saying. We don't like to think that they can hear us though, or we might go crazy from lack of privacy. The smallness of the place gets very noticeable as soon as we've been too busy to do the dishes for a couple days because you can't stack them in the small sink!

Exciting thing #4 - We have picked up tennis

We love tennis, and we've been playing it, especially since I work part time! I'm so lucky to has a husband who can love a non-sporty klutz trying to play tennis. :)

Exciting thing #5 - We got WiiFit!

We actually only got it yesterday, as the entirety of NorCal has been out of stock since my birthday, when I was originally s'posed to get it. It is AWESOME! I will probably write more on it later, as I haven't played it quite enough yet... but so far the rhythm kung-fu is rather amazing.

Slightly difficult thing #4 - I miss music.

My soul aches every day at the thought of teaching music and going back to school, but now is not the time. (I did pick up one voice student though!! YAY!) I am holding out for a little bit of hope that my next job could possibly be in a school somewhere? And yes, I've thought about substitute teaching, it's on the potentials list. :)

Overall point - God has an amazing adventure planned for us!

Although "times is hard," and the next two months are going to be interesting, we are so excited for what's on the horizon. We praise God for being in control of our marriage adventure and for providing for our needs. Moving to Sacramento also means we will need to find a new church, and we know that He already has one waiting for us to dive in! He is so good, and we are so grateful to Him!

Thorny ways

Be still, my soul: the Lord is on thy side.
Bear patiently the cross of grief or pain.
Leave to thy God to order and provide;
In every change, He faithful will remain.
Be still, my soul: thy best, thy heavenly Friend
Through thorny ways leads to a joyful end.

Be still, my soul: thy God doth undertake
To guide the future, as He has the past.
Thy hope, thy confidence let nothing shake;
All now mysterious shall be bright at last.
Be still, my soul: the waves and winds still know
His voice Who ruled them while He dwelt below.

- Verses 1 and 2 of the Hymn "Be Still My Soul"
Words: Katharina von Schlegel, 1752. Music: Jean Sibelius, 1899

I need these words this week, and probably the next two months. More on that later, for now I can tell you that I got demoted to part time work this week, so my husband is still unemployed and I only have a part time job. Good thing Jesus is in control, and I fully believe that.