Fun?

So we were at church today (our second week at a church we like a lot, more on that later) and we were talking to the pastor and he asked me what I like to do for fun.  I paused for a second with an "uhhhh" and realized I had no ready answer!  What do I like to do for fun??  Aside from just hanging out with my wonderful husband, I'm not really sure!  Turns out college and a lifetime of school didn't leave me with much "fun" time, and although it's been a year since school, I'm just now figuring out what I like to do in my "spare time."  Here's what I've been coming up with (of course too late to tell the pastor, I think I just mumbled something about reading...):

What I do for fun:

1. Be busy.  - apparently I don't really like having tons of spare time.  I'm more comfortable in a busier environment.  I am fully aware that my life will once again become busy once the job situations change, so I'm trying to enjoy my time now.
2. Be on the computer - ok, so it's sort of hard to tell people this is what I like to do for fun, they'll think I'm a couch potato or something... but I really enjoy connecting with people and stuff over the internet, especially when none of my friends live nearby.  (including this blog!)
3. Play a select few video games - I've written about this before, Little Big Planet, New Super Mario Bros Wii... most all of them I won't play by myself though, except for Animal Crossing (Wii).
4. Play the piano - this is a recent thing, as we only got a keyboard (a sad substitution for a real piano) from my dad, and it only works about 30% of the time.  But I LOVE to sit down and sight read something out of my easy piano classics book, it is so relaxing.  Corey has been picking up playing a little too, in fact that's what he's doing right now as I write this!
5. Read - I have recently picked up reading again after many years of schooling stealing my reading time.  I used to be a voracious reader when I was young, reading books way ahead of my reading level, devouring them like candy.  And our new apartment has lighting and comfortable conditions that make it easier to read.  I started out reading an old favorite (and an easy read) Martin the Warrior by Brian Jacques, part of the Redwall series.  I own all of the books except a few, and this one was my favorite.  For those of you who don't know Redwall books, they are about woodland animals who fight wars, basic good vs. evil.  Each type of animal has its own dialect or accent that makes it particularly enjoyable.  After reading that, I borrowed A Tale of Two Cities by Charles Dickens from my mom, who loves Dickens.  I had only read a Dickens in high school, and I barely remember even which one it was.  I should really write a whole blog post on A Tale of Two Cities because it was AMAZING.  Dickens has an ability to paint a story like nothing else I have ever read.  I read it in three days, enthralled with the story, the descriptions, the characters, everything!  It was not an easy read, but thoroughly enjoyable.  Next I am going to read Uncle Tom's Cabin by Harriet Beecher Stowe.  (I enjoy mostly classical fiction)
6. Scrapbooky stuff - I have always enjoyed scrapping, but it is a lot of work and a big mess, so I don't do it that often.  I am thinking I should do it a little more now that I have more time...
7. Shopping - this has always been one of my favorite pastimes, so it must be included on this list.  However, we all know that I cannot afford to do ANY shopping these days... so I need some other hobbies.
8. Watch TV shows online - this is also a problem, since we have basically no internet.  So far I've been to Barnes and Noble a couple times to get my fix.  (Dancing with the Stars final this week! EVAN!!!)

Well that's about it.  As you can see, I need some more stuff on the list.  Unfortunately a lot of the things I like to go out and do cost money, such as going to see the opera (NY Met Broadcasts to the movie theaters) or going out to coffee/dinner with friends.  I also am fully aware that I need to add exercising to the list, but it's really not FUN, so...

Cathryn's Story

You might remember me mentioning the booklet that I helped my sister Cathryn write called "A Story About Me and AT" and promising to post it.... well here it is.  If I could only describe the work that went into this...

In 2000, Cathryn Achilles was diagnosed with Ataxia-Telangiectasia, a debilitating genetic disorder for which there is no cure. The following is her story in her own words:

I shuffled across the stage in my daisy costume, trying to point my toes and keep my gigantic lace bonnet from toppling off my head. The crowd roared and I bowed again and again, soaking up their applause with all of my soul. I knew then, at the age of five that I wanted to be a ballerina when I grew up.  This dream as well as many others dwindled after numerous doctor visits and blood tests finally proved my parents’ concern that there was something wrong with me. I was 8 years old when we learned that I have a disease called Ataxia-Telangiectasia (A-T), a rare but deadly disorder which has no cure. I was in tears when my parents told me and my two siblings that my life will never be the same.

Not long after my diagnosis my family and I headed for Johns-Hopkins Medical Clinic in Baltimore to learn more about A-T.  While we were at the hospital we discovered a number of complications we would have to endure, the biggest one being gradual loss of muscle control.  For example, I aspirate liquids when I drink, I need larger prints to help me read, and I need a special keyboard to help me type. I needed a walker to help me walk—and now I use a wheelchair.

While the disease mainly affects my physical body, it affects my emotions and feelings as well. There are many struggles that come with being disabled or handicapped, but I believe Jesus Christ has His reason for each one.

One of my greatest struggles is making friends.  People look at me and they see “wheelchair,” not me or a potential friend. They prejudge my character and assume that if I am in a wheelchair, my personality must be limited. My true friends have stayed with me through the difficulty of my disease, but many have given up. It is even more difficult now, since my family moved away from my childhood town, and I am far away from the friends that I do have. Although this is painful, Jesus can understand and sympathize with me. Many people throughout His life didn’t accept Him and later rejected Him completely. Jesus continues to be my Best Friend, He knows me and listens to my every prayer. He is everything I need.

There are many dreams and fun things I would love to pursue that A-T prevents. Some of these smothered hopes include being a ballerina, playing the harp and other instruments, and being an Olympic figure skater or gymnast. Another is being a professional artist. I have always loved painting, drawing, and sculpting, and this disease has slowly taken these abilities away from me. But Jesus and His mercy will let me live on blissfully in Heaven for all eternity where I can dance before God’s throne and create art to His glory and praise. My dreams may be squelched here on Earth, but they will all come true in Heaven.

Another great struggle is feeling conspicuously different in society. I feel “in the way” all the time with my wheelchair, I am clumsy, and I stick out like a sore thumb. I sometimes wish that I could turn invisible because I am embarrassed. I can’t do things that most people can, and that makes me feel inferior. But Jesus helps me in this struggle too! He teaches in the Bible that I am to stand up for what I believe in, and I believe He wants us to be different. As a Christian, I am “not of this world,” my true home is in Heaven with Christ. If I stand out, I am able to be a better witness for Him.

A hard question to ask is, “Why me?” I don‘t know all the answers, but this I do know: it was God’s will. He planned it. “For I know the plans I have for you, declares the LORD, plans for welfare and not for evil, to give you a future and a hope.” Jeremiah 29:11  He wanted this to happen for His own purposes. I love Him and trust Him that everything will be fine, no matter how hard it is.  “And we know that for those who love God all things work together for good, for those who are called according to His purpose.” Romans 8:28  He has proven His love for me. I have peace of heart and of mind knowing these things to be true. I know this because He has shown me the truth through His Word.  God is not unfair. He’s compassionate and merciful and full of grace. He gives in abundance. If He were “fair” all mankind would deserve to be destroyed because of sin.  “For all have sinned and fall short of the glory of God.” Romans 3:23  “For the wages of sin is death, but the free gift of God is eternal life in Christ Jesus our Lord.” Romans 6:23  Throughout all of the physical and emotional struggles that I face daily with A-T, my Jesus is there to help me through and give me hope. One of my favorite verses is John 16:33: “I have told you these things so that in me you may have peace. In this world you will have trouble, but take heart. I have overcome the world.”

visit this link to find out more about A-T and research to find a cure.

Smiling

So, Jesus is always good and faithful.  Isn't that mind-blowing to think about?  Even when a sinner (such as me) gets hopeful in things seen instead of hoping in the only One that will never fail.  I have been craving earthly security, especially with having NO money, no health insurance, uncertain future...  It took some gentle prodding by my wonderful husband and a lot of tears to remember that there is NO earthly security!  Sigh.  I still think that health insurance would be nice, but if we don't have it right now, that means Jesus decided we do not need it.  We do not need health insurance and jobs that actually make money if Jesus doesn't give them to us.  He will supply ALL of our NEEDS.  I recently applied for a job that was perfect and I thought I actually had a chance at it, instead of sending resumes out into the depressing void of the economy.  When I found out that the job had only been posted for promoting an internal employee, I was very upset and hopeless, thus the need for Jesus to slap me across the face. :)

On a much lighter note, we went to the band concert at Wheatland High, conducted by my amazing father!  He had 4 ensembles play: the jazz band, the concert/beginning band, the percussion ensemble, and the symphonic band.  Rob (my brother) was in the jazz band and he had an especially great piano solo (wooo!).  It was great, and I am so proud to be related to such amazing musicians.  (And I can't wait until I can teach...)

ALSO, there are finally pictures up on Facebook of our new apartment!  Here is my favorite:

and maybe one more for good measure:

We are so happy in this wonderful place, Jesus is so good to us.  Please continue to pray for jobs that are good (as long as Jesus so desires). 

And one last fun update, I went to see the Chorale perform a week ago, as they were in this area on tour!  I don't think they had any idea how awesome it was to see them.  As I have not made very many friends up here, being able to hug several people dear to my heart was SO refreshing, not to mention the music.  And as if the night couldn't get any better, Dr. Plew had me (surprise) conduct Chorale's signature piece at the end of the concert (as he is wont to do)!! :)  It was pretty nerve-racking to get up in front of Chorale and conduct a song I haven't heard in a year, but we sang it so many times that it just came from my soul and made me soar.  It was wonderful.  Thanks, guys.

Well despite sharing some struggles at the beginning of this post and a mildly rough week, we are still happy and trusting Jesus and learning how to smile all the time. :)  Currently looking forward to summer!  yay!

37 happinesses

Well... I wish I had a million hours and good internet to spend a long time on this blog post, but I dernt.

Our new place is FABULOUS.  I have taken pictures, and I hope to get them up soon.  Here are 37 reasons in random order why I love our new apartment:

1. the kitchen sink (actually big enough to put dinner dishes in... it's stainless steel and it has two sides)
2. the garbage disposal
3. electrical outlets that connect to light switches
4. you can't see the bedroom from the kitchen
5. full sized fridge that lets you put stuff in the door
6. a huge oven/stove (YAY!)
7. storage for cookie sheets under the oven
8. a dishwasher (although it's not the best)
9. a washer and dryer!
10. space above the cupboards for pretty things (and breadmakers that don't fit inside any cupboards)
11. a fan above the stove that works
12. big windows with blinds (hallelujah!)
13. a balcony (now we need a BBQ)
14. no mud!!!!! (I live surrounded by concrete, praise the Almighty!)
15. the entryway - leave your shoes at the door, thank you :)
16. a closet where my clothes don't drag on the floor  (sigh of contentment)
17. carpet - new and clean!  
18. a bathroom door!! with a lock! (you can come visit now and not be embarrassed)
19. a tub for baths - I just might have taken 3 already (within one week)
20. a bedroom door
21. a front door that doesn't let in the bugs or the cold or the dirt...
22. room on the kitchen counters to set out my beautiful Kitchenaid mixer (goofy grin)
23. non-white walls
24. storage in the top of the closet - amazing.
25. a toilet without rusting brass hinges
26. kitchen floor that isn't warping
27. a linen closet - what luxury!
28. a coat closet - oh, heaven!
29. a kitchen faucet that turns on and off the correct direction
30. a bathroom sink your hands fit in
31. the ability to use our boxsprings under our mattress
32. having two sides of the bed so we don't have to climb over each other to get to the clothes or the bathroom
33. the air conditioning and heater controlled by us at all times!
34. enough light in the bathroom to see while I shave or try to put makeup on (I had daily makeup streaks with the old place)
35. a peephole in the front door.  (sorry! not home! just kidding)
36. a full sized ceiling fan
37. the fact that strange landlords don't come knocking at your door asking you to kill rats with a shovel.  (obviously a story for another time)

I hope you are grateful for your house or apartment.  It really does change your life.

No new jobs yet, but several leads and much more hope!  Corey is acing culinary school and bringing me home food now that the school is down the street.  YESH!

...AND... I've been cooking!  So far it's a bunch of mom's recipes so they're familiar, but turns out it's kinda fun!  I can't wait until we have more money to buy more ingredients to make more stuff. :)  On mother's day, Corey and I fed the family and did all the cooking.  (that's a big deal)  It was delicious and you should be jealous.  I wish I had more time to tell you about it in detail, but I will leave you with the fact that my husband is awesome and shirred eggs are fabulous.

Praise Jesus!

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.