Welcome to Holland

I found a new Facebook group tonight for people diagnosed with "Lebers" (LHON). In the discussion posts, which I'm finding very helpful, a lady posted this poem, saying,

"I found this story soon after my son was diagnosed with LHON, and it helped me to understand and to explain to others the adjustment my family and I had to make to "our new reality." I hope posting it here will help others who are also learning to cope with it."

Welcome to Holland
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Colosseum, Michelangelo‘s David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

I consider finding this a blessing! I really do. It puts things into perspective. It shows that just because you aren't living the life you planned, you are living the life that God planned for you, and it'll be great- as long as you remember that this ride will be just as good as the one you had planned to take...maybe even better! You can't spend your whole life thinking about what could have been, otherwise you're going to miss all the blessings you are receiving right now! Use all your trials and tribulations to glorify God; be an example to those around you! Show everyone that nothing, not even being diagnosed with a disability will keep you from shining your light and praising God!

I know life is hard sometimes, but it's the hard times God faces you with that are meant to bring you closer to Him. I know I can't completely understand; but I care, and I try to understand, and I'll do anything in my power to help. This is just the beginning of a long, hard, and fulfilling road we must all take together.

I love you baby brother! ♥ :)

Pineapple Cake

A friend of my grandmother's recently gave her a recipe for a "Weight Watchers Pineapple Cake." It's a really simple recipe and since my Pawpaw was craving a good dessert, we decided to go ahead and try it out!

Ingredients:

• 1 box of Duncan Hines* fat free Angel Food cake mix
• 1 can (20 oz.) of Dole* crushed pineapple
• 1 package of fat free Cool Whip

*I'm sure you don't have to use Duncan Hines and/or Dole, as long as it's fat free angel food cake mix and crushed pineapple! 

Instructions:

• Preheat oven to 375 degrees.
• Mix the cake mix and the pineapple {juice & all} - Once the two items are mixed they'll start to foam up!
• Pour the batter into an UNGREASED cake pan {Mawmaw used parchment paper just in case the cake stuck to the pan after it was cooked- worked great!}
• Bake for 30 minutes {or, if you used another brand, however long the angel food cake box says to cook it} - Should be golden brown when done! 
• Remove from oven and let it cool completely
• Cut cake into 12 pieces and serve each piece of cake with 2 tablespoons of fat free Cool Whip.**

**We just put the Cool Whip on top of the cake and then cut it up! :)


Each piece {1/12 of cake} is only 4 Weight Watcher points!!! You've GOT to try it!

You learn something new every day.

I have learned a lot here in the past week or two:

I have learned lately that when you forgive, you're not doing someone else any favors, but you're doing yourself a huge one!

I've learned I can get a lot done with the TV off.

I've learned that a clean home is a happy home.

I've learned that people actually read my blogs, and my posts on TMTGYTYD. I've also learned that that makes my heart smile! :)

I've learned that true friends can pick up where they left off after a long time of letting life get in the way.

I've learned that sometimes it's best just to end an argument with an ignorant person by ignoring their comments until they stop commenting. Otherwise you could be arguing for a loooooong time and get absolutely no where when you are "finished."

I've learned that my grandparents are awesome. and so is my Mom. {but I kind of already knew that}

I've learned that two people can see the same situation two completely different ways, and no one be wrong.

I've learned that some people are just meant to be in your life for a short while, for a specific purpose.

I've learned just because you're not best friends with someone anymore, doesn't mean you don't wish them the best and love them as a person.

I've learned that no matter how down in the dumps someone is, you can not help them if they are not willing to help themselves.

I have learned that Hank Baskett is an absolute doll and any woman would be extremely lucky to have her husband/boyfriend talk to and treat you the way he does Kendra. It really made me cry tonight! I'm rooting for those two.

I've learned that I need to clean my closet out and donate alllllllllll the stuff I NEVER wear!

I've learned that I feel prettiest with a tan.

I've learned that I have absolutely no idea what my future holds- but I KNOW WHO holds it and because of that, I am not worried!

I also learned I need a part-time JOB for the summer. If you know of anything in the Lincolnton/Hickory area, let me know! ;)

Ten Minutes To Get You Through Your Day

After enough reminders from "the man upstairs" I vowed to kick certain areas of my life back into high gear! One of those areas being ten minutes to get you through your day. I can't tell you what it means to me to see that 390 people have joined my Facebook group. It means even more to me to see people commenting on the discussion posts/devotions. Comments like "I love your group!" or "Your devotion you posted really spoke to me." REALLY make my heart smile! I don't ask for compliments, or validation- but just hearing such things really is an encouragement! So, I do want to say THANK YOU to those who have joined, and to those who comment! I hope you continue to be blessed!

I posted a new devotion today on ten minutes to get you through your day. Please join if you haven't already! I hope you get to check it out. :)

Book Love

Today was a BEAUTIFUL day in Lincolnton! What a great way to start the weekend! Alex took the top off the jeep, came to pick me up, and we headed downtown to go walk! *Which, by the way, makes me miss my great great friend, Lindsey Jervis!*

Side note: Alex takes a whole different route than "normal people" when walking "downtown." Once we passed ZAXBY'S I said, "Okay, I'm turning around!"

So, we went walking downtown...{here comes the point of my story...} & we came across North State Books. I always walk/drive past the place, and I've been in there a few times, even bought a couple books in there. But my word! Let me tell you...this is what this place looks like!

There are books EVERYWHERE. This isn't an actual picture inside North State Books, but, really, that's what it looks like. I asked the man if there was any rhyme or reason to how the books were sorted. To shorten his answer: there kind of is but not so much anymore. If you're looking for something (or some kind of book) he can definitely point you in the general vicinity of where it'd be stored. And then, get to looking!

They have SO many books of all kinds in there! SUPER cheap too! Me, being the shopaholic I am, bought 8 books in there today! I only spent $35 though! :)

I bought: 

I used to own A Child Called It, He's Just Not That Into You, and It's Called a Breakup Because It's Broken but I either lost them or lent them to friends who never returned them, so, for as cheap as they were, I just re-bought them! They were that good! :) I heard that You're Not That Into Him Either was pretty funny/good, so, what the heck!

I read She Said Yes in 7th grade- we may even have read it as a class actually... but it's about Cassie Bernall, who was a 17 year-old student at Columbine High School, who was asked "Do you believe in God?" before she was shot in the head and killed. Hence the title of the book, "She said yes." I remember liking it then, so, I bought it! :)

And, if you haven't ever read a Torey Hayden book, do yourself a favor and pick any of them and start reading. :) I'll review them as I read them. I have a to-read list a mile long! Better get to reading then, huh?!

"Gilding the Lily"

Tonight, after showering, moisturizing, finding something to wear, curling my hair, and playing with my new makeup, my Mawmaw comes into my room and just peaks her head in and says, "You're gilding the lily." Of course I immediately asked her, "What does that even mean?" and the response I got was, "Figure it out."

So, I googled it. :)


gild ¹ (gld)

tr.v. gild·ed or gilt (glt), gild·ing, gilds

1. To cover with or as if with a thin layer of gold.

2. To give an often deceptively attractive or improved appearance to.

3. Archaic To smear with blood.

Idiom:

gild the lily

1. To adorn unnecessarily something already beautiful.

2. To make superfluous additions to what is already complete.

She is the absolute best. I love her so much. I'm so glad God decided to bless me with the sweetest Mawmaw in the world! It's nice to receive compliments every now and then. Especially ones that make your heart smile. :)

I just thought I'd share with you all what "gilding the lily" meant, in case you were like me and had no clue!  

In honor of St. Patrick's Day

I am not a St. Patrick's Day fan, but I am a fan of this YouTube video. The things people will do for a pot of gold to get on TV.

Coke brings happiness!!

My future in counseling

I just watched the movie Precious...finallly! I had heard SO many good things about the movie and couldn't wait to actually come to a Red Box and see it available to rent! To make a long story short: the movie is intense and I absolutely loved it!

The movie did get me thinking about my future in counseling. I know that, unfortunately, the things that Precious had to endure is going on in our home towns. You don't have to travel to Harlem to experience physical abuse, sexual abuse, verbal abuse, incest, rape, hatred, or anything else equally as horrible. Most of these situations go unnoticed. Unless the student becomes a problem, then their home life may be investigated. That is not okay with me. However, I wonder what process these "children" face once they make their home life situations known. Do they visit with a social worker on a regular basis? Are they taken out of their home immediately? Are they still in any danger? Are they seeking counseling?

I know I'm in the beginning stages of learning counseling theories, techniques, ethics, etc... but one day, when I'm ready, I want to be able to help people, genuinely help people. Someone like Precious needed HELP, someone to talk to, someone to listen, someone who will take her seriously and work on changing/fixing the SERIOUS problems. I'd like to be that person for someone someday. That's a personal dream of mine. I don't know where God will lead me. I don't know if I'll ever be a counselor, honestly. Everything in life is  God-willed... I know that. But, if I could choose how my counseling career would go, I'd like to make a difference.

I'm so indecisive. There are things I know I absolutely do not want to do. And there's things I'd like to do, and then there's things I'd love to do. I would love to be that liaison for a child in need. On a completely different note, at times I think I would love to work as a counselor, counseling clients who have recently been diagnosed with a life-altering diagnoses. Or with families whose children may have recently been diagnosed with some sort of ailment. I know when you are diagnosed with something, you have all these sudden worries, fears, anticipations, goals, anxieties...feelings...and it would definitely be beneficial to speak to a professional counselor about everything going on. I would love love love to do that!

Watch, I'll probably be a middle school guidance counselor. Haha....

Time will tell. I just thought I'd share some of my long-term goals with you tonight. :)

Total randomness

The past two weeks have been CRAZY busy! Last night, at about 11:45pm, as I was on my way back to my apartment after almost six hours of "class", a staff meeting, finishing up RA selection stuff, and finally getting dinner it hit me: I'm done! (For the week at least!) It just felt so so soo good to not have anything to do.

Alex came to see me today in Hickory and brought Baby with him! Poor them... she threw up in his car on the way! :( (She does that from time to time, still.) I love love love having her, well them :), here with me! We three spent the entire day being completely lazy and I absolutely loved it! He stayed with her while I had a group meeting and had to run some errands. I hate leaving her here by herself because this isn't her normal environment and I've heard her do that doggie cry after I left her alone in my apartment. That KILLS me!  But anyways, us girls are having a sleepover tonight and will probably spend all day tomorrow packing because tomorrow I get to come home for an entire week for Spring Break! I am really looking forward to not having plans, getting to lounge most of the time, getting to see some friends and family, and just get some R&R at home! :) Wow I can definitely tell I'm getting older. I was going to say.. "I'll get to spend my days relaxing with Alex" but I am wishing and hoping and praying that he gets this job he has been interviewing for!

Side note: I must say that Alex has really made me proud. He graduated in May & since then has been patiently waiting for God to place him where He wants him to be & has really been strong at staying patient and staying faithful! I know God will place him in an awesome job soon. Wherever that is, I know it'll be right! :)

Now, RA selection stuff is over (*sigh of relief*), I got an A on my stats test this week!!! & I am 2 completed projects closer to the end of the semester! That feels great!! Let me be honest and say: I bombed the crap out of that stats test! I felt SO horrible about it as I left the classroom that day. I made a whopping 69 on the test! The crazy thing is...the highest grade on the test was an 83, and my 69 curved to an A!!! I was praising Jesus because there's no way in the world I deserved that grade! Alex said, "I hated people like you in college," haha!! I vow to study more for the next test, even though we are given that miraculous grading curve!

 Now, it's Thursday night, the Thursday night before Spring Break, and I'm pretty sure it'll be "one of those nights"...Mark my words... I do hope all my residents will be a little more safer than usual, a little less buckwild than usual! haha

Optical Illusion

When you first look at this picture you see Albert Einstein.
Stand 15 ft. away from the picture and who do you see?

 

Marilyn Monroe! 

"Now what do you think about the reliability of an eyewitness testimony?" the forwarded email asks.

I am just a dork who loves optical illusions! :) .. and I don't think the illusion requires 15 feet either, but you get the idea!

Layla Grace

A Facebook friend of mine posted a link to a blog a couple weeks ago. Out of sheer curiosity I clicked the link and became obsessed!

Meet Layla Grace....

You can find more info on Layla at http://laylagrace.org/ but, I feel I must share this story with you.

Layla, this precious little girl was described as a great eater, great sleeper, and a sweet little cuddle monkey who had an advanced vocabulary for her age. Her mother writes that she had a great 15 month checkup but at around 16 months Layla's sleeping and eating habits changed and she became more irritable. Time passed. Her parents thought they had a picky eater on their hands. A ear infection was said to be the blame for a swollen eye Layla woke up one morning with, and her hard and distended belly was treated with medication for constipation. After another weekend of no dirty diapers, she was referred to a GI specialist who ran some tests.

Layla has a massive cancerous tumor (Stage 4 Neuroblastoma) in her abdomen. It extends from above her left kidney, around her side, over her belly and wraps around her aorta. In addition, the cancer is in her bone marrow. Sweet little Layla went from normal happy and healthy to lethargic, in pain, and skin and bones in a matter of a week and a half.

Frequent updates on Layla’s status can be found at http://www.twitter.com/laylagrace.

The Marsh Family can be reached at: fightforlayla@gmail.com.

Now, I do not share this story with you to depress you. I do not share this story with you to scare all the new mothers out there who happen to be reading this blog. If you have some spare time, take the time to read the blog Layla's mother is writing. Of course she is not choosing to blog over spending her dying daughter's last moments with her. Layla sleeps a lot and her mother is finding a way to pass the time, vent, express her emotions, and update the CRAZY amount of people and celebrities who have been following Layla's story. Sometimes I think posting information that is too personal on Facebook is at times inappropriate, but I recently learned that sometimes Facebook, email, blogs, and Twitter can sometimes be the best way of communicating with a large group of people. Just imagine if Layla's mother had to personally update each person on Layla's condition each time she was asked. Thank you, Lord, for technology! And I know that blogging really at times is a form of venting. It's free therapy! (if it's working!)

Yesterday Layla's mother wrote this:

My relationship with God has grown so much the past few months. That is all Layla’s doing. I’m so grateful that I was blessed with this angel on earth. She has taught me patience, faith, strength, grace and love. She has continued to amaze me over and over again.

 And that is why I am sharing this story with you. This is probably one of a family's worst nightmare stories. I could see this emotionally scarring a person, a mother, for life. I could see this depressing her beyond belief.  I could see this causing so much anger and hatred for God in her heart that she never turns back to Him again. I can see how some would say "God is not answering her prayers" and "God is letting this innocent little girl die." But WOW! This mother is taking one of the worst things a mother would ever have to face, and is letting it bring her CLOSER to God!

She also posted this verse yesterday:

"But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body. For we who are alive are always being given over to death for Jesus’ sake, so that his life may be revealed in our mortal body. So then, death is at work in us, but life is at work in you.

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal."

-2 Corninthians 4:7-12, 16-18

On February 28th, her mother wrote:

Still, we kept praying expecting a miracle. Never give up hope, that’s our motto. God doesn’t bring the bad, he brings the good. But we knew in the back of our minds that it might be part of God’s plan for her to return home to Him. It’s not too much of a stretch to believe that God’s work with Layla here on earth is nearly complete.

 She has the right idea! She is being an example of true FAITH to us all! You never ever ever give up hope, and give your life (and the life of your children) up to God, trusting that whatever He chooses, life or death, peace or pain, will be a part of His perfect and pleasing will, giving glory to Him! I know she's struggling. But her testimony is and will be so powerful! She is a hero of mine! And not only her, but all of the people who are in pain and still find a way to trust that God has a plan and whatever it may be, you're happily along for the ride!

I know that Layla Grace is not the only child suffering from cancer. I know that her mother is not the only person that is being a great example of someone who has TRUE faith in the Lord. This site and story was simply brought to my attention, and I felt the need to share. I hope it touches your heart and teaches you the many lessons it has seemed to teach me lately as I've been reading. I will continue to pray for Layla and her family as they go through these last days, and also for her family as they cope with the loss of their daughter. However, God performs miracles everyday (so don't think I'm giving up hope!)

http://laylagrace.org/

Follow Layla on Twitter

Update February 2015: I believe the website is no more and the Twitter account looks like it is no longer being updated. Praying that the family has coped well with the loss of their beautiful daughter and that the Layla Grace Foundation is a success. 

texts from last night

So I read some funny texts from last night & found some that I could totally guess who they came from! The site's usually filled with inappropriate texts, but some are just too funny not to share! I searched local area codes & this is what I found:

980: I am making dinner, so you might want to actually come home tonight.
704: oh, you finally did the dishes then?
980: no, bought new ones
---I could soo see me saying that!---

704: soooo my gf got the droid and doesn't have BBM anymore, I think its over for her

704: he looks like a really good dad on facebook

704: I can make a handprint turkey for extra credit in history. I feel like the word college should be in quotes on the school letterhead

704: You ran away and I found you three blocks later lying by a dumpster because "that's where your life belongs"

704: One of my students just wrote an essay on how ninjas, like drug addicts, must realize they need help before they can get better...I gave it an A+

704: How do i ask the guy i made out with for 4 hours if he is gay? He keeps telling me i'm so adorable and that he had a "blasty"

980: How do I recover from singing "your body is a wonderland" on his voicemail?

980: you sent me the whole alphabet, one letter a text. it took me 15 minutes to read them all.

828: I had a terrible day! The only thing that makes me feel better is knowing Jack Bauers day was worse. 

Quotes are my favorite!

"I have been heart broken. You can't breathe, your eyes are pouring a thousand tears a second and you can't foresee going on with love because you never want to feel this way again. But then you have to look in the mirror and say 'Shut up, eat some ice cream, be by yourself for a while and think about who you are and who you want to be - then, go out and find someone compatible.' A broken heart feels like the worst thing in the whole world, but it really helps you decide what you want and don't want. You learn a lot from a broken heart."
-Jennifer Love Hewitt

"Blessed are the hearts that can bend, they shall never be broken."
-Albert Camus

"You are way too young to not believe it's gonna be okay."

-One Tree Hill

"Nobody in life gets exactly what they thought they were going to get. But if you work really hard and you're kind, amazing things will happen."
-Conan O'Brien

"And we were dressed from head to toe in love...the only label that never goes out of style."
-Sex & the City, The Movie

"Did you say it? I love you. I don't ever want to live without you. You changed my life. Did you say it? Make a plan, set a goal, work towards it. But every now and then, look around. Drink it in. Cause, this is it. It might all be gone tomorrow."
-Grey's Anatomy

"It is what it is."

"I may not be perfect but Jesus thinks I'm to die for!"

"God may not always give us answers, but He always gives us grace."

"Perfect people don't exist but there is always that one person that is perfect for you."

Live for the moments you can't put into words ♥

“There are certain shades of limelight that can wreck a girl's complexion”

"All every girl wants is one boy to prove to her that they're not all the same."

"JUST BECAUSE SOMETHING IS, DOESN'T MEAN IT SHOULD BE."

"I was born with an enormous need for affection, and a terrible need to give it."
-Audrey Hepburn

"I believe in manicures. I believe in overdressing. I believe in primping at leisure and wearing lipstick. I believe in pink. I believe that loving is the best calorie burner. I believe in kissing. I believe that happy girls are the prettiest girls. I believe that tomorrow is another day and I believe in miracles."
-Audrey Hepburn

"I believe love works. I also believe love is work."
-Me :)

my much needed time with friends and family! :)

The past few days have been filled with friends and family and I have absolutely enjoyed (almost) every minute of it! ;)

Thursday was Grey's night (of course) & I had Amanda & Mallory over! We had chocolate pudding in wine glasses and it was phenomenal, haha!

Friday I went to visit Pat in Charlotte, but not without running 23498372498 errands in Lincolnton first! I got to have breakfast with Ale, which was great because I love catching up with her! When I finally got to Charlotte, Pat & I went to get some Mexican to eat and then on our first trip to Ikea!! Needless to say (but I guess I will anyways) that I was more thrilled than he was...but he honestly didn't seem to mind!

Side note: Someone should have informed me of Ikea's processes before this day. We walked in upstairs to the furniture showcase rooms and had absolutely no idea what to do if we found something we wanted! I was scared to ask the guy, for whatever reason, so Pat did, haha! I also didn't know that you have to walk ALLLLLLL through the store to get what you came in there to get. I didn't have an agenda so it was interesting to see everything and go through the store with Pat as we commented on everything we saw. And no one told me that, for example, if you wanted a kitchen table, you had to write down on what aisle & section you found the tabletop, and then go find the legs (you can't forget the table legs- & again, no one was really around & there to tell us these things) & then take your info to the bottom somewhere & tell them what you want, they give the pieces to you, and you take it home and put it together. MAN, that sounds difficult. Good thing I didn't buy anything big. I luckily walked out of there only having spent $9. Dave Ramsey would have been proud.

Okay, that was a long side note. Anywho... I enjoyed talking with Pat, catching up on some things with him, and just hanging out, spending some time together! We don't get to do that nearly as often as I'd like!

Afterwards, I got to go see one of my best friends, who I had not seen in FOREVER! - Elizabeth :) .. We chit chatted on things going on in life, what our friends had been up to, and went to get some Japanese. (I ingested about 23948723894 calories that day- no wonder I was sick when I got home). I love Elizabeth and I had missed her so much! It's nice to know that time and distance can not separate two friends who truly care. :)

Friday night was supposed to be "date night" or something of the sort with Alex. Considering I didn't get back to Lincolnton until 10:30ish & had the WORST headache ever and felt like I was going to barf up the 23948723894 calories I had consumed, I kindly asked Alex if he would mind coming to see me at Mawmaw's before I went to bed. He didn't really argue or complain. I love that man! He understood how important it was for me to catch up with my long lost friend so he didn't say anything, even though I hadn't seen him all week and wouldn't be seeing him the next night (or so I thought), and came over to hang out with me for a little and search the house for headache medicine! He's a sweetheart when he wants to be. ;)

Saturday, Alex & my fabulous cousin Nick came to put a new desk in my room. MAN I wish I would have thought to take a "before" picture because my back room was a complete j-u-n-k room! Full of storage, dirty laundry, random pieces of things, this and that, whatever! It was a mess! It looks WONDERFUL now that I have a big desk to put things away in! I also about killed myself putting heavy boxes of storage in my cabinets ten feet in the air! That was a serious workout!

Saturday night Alex & I met Brandon and Meredith, Becky & Randall, & Matt at Dos Amigos in Hickory for dinner! What a fun group! I enjoyed it! I definitely impressed myself with my knowledge of season one Modern Family quotes! ;)

And last, Tori and I had a movie night at my apartment when I returned. She had never seen The Breakfast Club before so we HAD to watch it and let her know what everyone's talking about when they refer to that movie. I enjoyed it, again, and she seemed to too! :) Success!

I'm sure you couldn't care less about any of this stuff, but I just wanted to share with you details of my fun-filled extended weekend, filled with family & friends! :) I sure needed it, and thoroughly enjoyed it. :)

I recommend not only having girlfriends, but SPENDING TIME with them, talking to them periodically on the phone, catching up! It's free therapy, a stress reliever, & just good ol' quality fun! :)

Breathless

Okay, so I might be a major loser but I hear pretty songs with meaningful lyrics (to me) and sometimes I like to pretend they're Christian-based, because I can totally hear them being Christian-based, even if a "secular" performer is singing the song (NOT saying they're not a Christian, please tell me you understand...) Anyways, so, I'm in a good mood today (this week is tax refund week and financial aid refund week!) and I am sitting here, listening to some Taylor Swift shuffle on my iTunes & hear her new single, "Breathless," which is actually a Better Than Ezra cover that she performed for the Hope for Haiti telethon in January. So I'm listening to it, loving it of course (if you didn't know this, I'm a major Taylor Swift fan), & I can totally see it being a Christian song -- one of forgiveness and unconditional love of the Father! I know that some might disagree with me...but that's just how I saw it at the moment and thought I would share this beautiful song with you! I included a YouTube of her performing it at the telethon for you so you can hear it if you want! Enjoy! :)

Breathless lyrics:
Here you are now
Fresh from your war
Back from the edge of time
And all that you were,
Stripped to the bone
I thought you­'d want to know

That when you feel the world is crashing
All around your feet
Come running headlong into my arms
Breathless
I'll never judge you
I can only love you
Come now running headlong
Into my arms
Breathless

Lay down your guns
Too weak to run
Nothing can harm you here
Your precious heart
Broken and scarred
Somehow you made it through
I only ask that you won't go again

When you feel the world is crashing
All around your feet
Come running headlong into my arms
Breathless
I'll never judge you
I can only love you
Come now running headlong
Into my arms
Breathless

So glad to see you smiling
So good to hear your laugh
I think that you've found you even
Missed yourself
I'm only asking this because I think that
Truth be told
Oh, you'll never go again
Again

When you feel the world is crashing
All around your feet
Come running headlong into my arms
Breathless
I'll never judge you
I can only love you
Come now running headlong
Into my arms
Breathless
Breathless



:)

Blindsided

blind-sided

tr. v.

1: to be unpleasantly surprised, usually with harmful effects

2: to be hit from the blind side

3: to be the recipient of something unexpected and usually undesirable

"Sometimes in the darkness, we find ourselves."

In my previous post I referred to this movie, Blindsided. It's an HBO documentary on Jared Hara, a young teenager who has the same disease my brother, Pat, was recently diagnosed with, Leber Hereditary Optic Neuropathy ("Leber's" or "LHON"). The day after we got home from Duke, Mom went online to purchase it. We heard it was really inspirational and uplifting. So, a couple days later she gets it in the mail, watches it almost immediately, and then texts me saying, "yep, still crying. it's so hard to watch..." . Well I couldn't not watch it so I got it from her the next day. After going out to dinner with Mom and Laren, I came home to an empty apartment. I put the DVD in and started watching it. The documentary's website describes it as saying:

"Blindsided" is an emotional and inspiring true story about the Hara family, whose son Jared was diagnosed at the age of twelve with a rare genetic disease that would leave him permanently blind. The documentary delves into the minds and hearts of family and friends about the two-year long downward emotional spiral that threatened to destroy this once devoted family. In the end, it is an uplifting story about love, friendship, forgiveness, and the strength of the human spirit.

"Blindsided" is a story of what happens when a family is faced with the unforeseen, the unimaginable. It is a story about a father whose depression and blame rip apart his once devoted family. It is a story about a mother who must live with the fact that she passed down the gene that took her son's eyesight. It is a story about a sister who must live knowing that she carries a gene that would render his blind at any moment. It is a story about Jared, who loses his eyesight in the prime of his life and finds the courage to bring everyone out of the darkness.

Almost immediately into the movie, they show home videos. I think it was the video clips of Jared and his older sister, Audra, that got me going. I mean it didn't take time at all and the tears were flowing uncontrollably. Seeing those videos of a loving older sister, hugging her little brother just touched my heart. I remember those days. Of course my brother and I always argued growing up. We're three years apart and were kids, so of course we fought. But I always loved my baby brother.

There are some very touching moments in the movie...

• moments where Jared's father talks about when Jared tells him that "in not much too longer he wouldn't be able to see him anymore"
• Jared learning who his true friends were, people who stuck around, looked out for him, defended him, helped him out, didn't make him feel isolated, and understood, or at least tried to understand how extremely hard things were for him
• Jared playing in his last hockey game, barely being able to see the puck, not even knowing he scored the winning goal
• showing the depressive state the family went into after Jared's diagnosis
• referring to unsuccessfully trying new technological things to attempt to bring Jared's eyesight back
• watching Jared's mother contemplate to herself whether or not she believes she would have chosen to have her children, had she known she carried this genetic mutation
• listening to Audra talk about how angry she gets, thinking her parent's sole focus is on her brother and the loss of his eyesight, ignoring the fact that she could lose her eyesight at any day, and also the anger she holds for her brother that she loves, simply because she's sad that he's lost his eyesight
• a friend of the family crying, talking about Jared "not ever being able to see his mom again"
• and of course watching Jared as he CHOSE to face his diagnosis head on, learning to live his life as normal as possible, learning to play the guitar and being pretty awesome at it, as well as many other things he always wanted to do

As you can imagine, watching this movie really got me thinking about so many things in my life. Which I won't get into now....I just wanted to try to share this documentary with you, because it really touched my heart more than I had expected.

"Sometimes you have to come from a really dark place, but it's completely up to you to pull yourself out of it."

-Brent Smith, lead singer of Shinedown (featured in "Blindsided")

February 9, 2010

I sent this message to some family and close friends of mine who have been praying for my brother and my family and had asked for updates.For those of you who are asking, here it is:

So yesterday we went to Duke. Mom & I left at 7am to get Pat in Charlotte & head up to Durham. Our appointment was at 1:00 but we wanted to make sure we knew where we were going and had time to eat or whatever, and not be late. Pat saw one doctor at about 2:15 and she did some vision tests, color tests, and a field test. We waited for another 2 hours and saw Dr. Bhatti, who we had come there to see.
Apparently the last two doctors Pat has been to have run a large number of tests, including the spinal tap to test for MS, and no test results were forwarded to Dr. Bhatti's office. Without that, everyone's still assuming a lot. But it wasn't a total waste.

First of all, Dr. Bhatti listed all the reasons for us as to why he believed Pat did not have MS (Multiple Sclerosis). -- Mainly because his eyes weren't in pain, his MRI of his brain was normal, other areas haven't been affected yet, one eye got bad and then months later another, and because generally Pat was otherwise healthy.

Dr. Bhatti STRONGLY believes that Pat has "Leber Hereditary Optic Neuropathy" (info on LHON can be found here  & here).

Luckily, Pat has already been tested for "Leber's" and the test results were included in the bunch that were not forwarded to Dr. Bhatti. Dr. Bhatti is extremely knowledgeable about Leber's. He has worked on clinical trials and was even the doctor for Jared Hara, who had a documentary of his story on HBO, called "Blindsided" (http://blindsidedthemovie.com). Dr. Bhatti said the test results should have only taken 3-4 weeks to get back, so Mom should have them by now. Mom has been desperately trying to get in touch with the doctor's office but they either don't answer, don't call back, or say "all results are not back so we can not give you any results yet."

So, Dr. Bhatti said, he believes so much that Pat has Leber's that he should live as if he has it, until otherwise proven that he doesn't. He even said that if Pat's past test comes back negative, to come back to Duke to have the test redone and sent to a different lab. Apparently there are 3 different mutations for Leber's in the cell's mitochondria, and the blood tests only test for the most common, and Dr. Bhatti has seen tests come back negative for one mutation, retested, and then come back positive for another. So, if the test results come back negative, Pat will be retested.

About Leber's....(here's what I got from Dr. Bhatti, but you can click the links above & read more info if you'd like). Leber's (or LHON) is a genetic mutation disease, found in the mitochondria of the cells. It's passed through the mother's genes. Dr. Bhatti then explained to us that if Pat's results came back positive, then I would also have Leber's. Pat will not be able to pass this mutation onto his children; however, I will pass it to mine. Dr. Bhatti explained that with this genetic mutation, Pat (males) had a 60% chance of losing their eyesight and I (females) have a 20% chance of losing my eyesight. Anyways, Pat's "bad" eye is probably as bad as it's going to get, he thinks, but he told Pat that he believes within a couple months Pat's "good" eye would get as bad as his "bad" one. Pat still has peripheral vision, but straight ahead everything is very blurry.

There is no treatment plans that they have found to work for Leber's. He asked Pat if he has contacted anyone regarding low vision "tools" or something of the sort....and within the lat week or so Pat had. Pat and Mom have met with a social worker discussing Pat getting disability, and getting different services like a "pebble" to magnify his books, etc. so he can do his school work (which is suffering pretty bad right now), or Zoom Text which will blow the text and images up on his computer, and a closed circuit TV (I think is what they called it) so he can try to put whatever it is he's trying to see up on the TV to try to help. Either way, all these things are very expensive and Pat is trying to contact The Lion's Club to see if they can help financially.

Dr. Bhatti said that if Pat's results came back positive, and he was almost certain they would, that his previous doctor, Dr. Saunders, could explain to him all he needed to know about it, or he could come to Duke and he would do it personally. He said Pat his personal office number and said to call and leave a message and he would fit him in ASAP instead of waiting the normal 2 month wait. I personally believe Dr. Bhatti is the best bet with all this....especially since he can spit off the genetic mutation number "11778" and stuff like that. He also said that if the results came back positive, that Pat did have Leber's, he strongly encouraged him to watch that HBO film, "Blindsided" because it showed this happening to a boy a little younger than Pat, all they went through, and how he is able to live as closely to a "normal" life that he can now, adapting to his condition. Dr. Bhatti joked that we should also just watch it anyways because he was in it, as Jared's physician- haha.

Dr. Bhatti called us at 9:45pm last night on our way to take Pat back to Charlotte (this was obviously an ALL day thing...Mom & I didn't get home until about 11:30pm). He said for Mom to call tomorrow to get the results, and if she is having trouble doing so, that he would call personally to get them. I thought that was so kind of him to do. He was obviously thinking about Pat late that night and wanted to help as much as he could. He had called the house and talked to Dad, you know...thinking we would be home by then. He obviously doesn't know us that well, haha. Dad gave him Pat's cell phone number and that's when he called and talked to Pat. I just couldn't believe that late in the evening he was making calls trying to get in touch with Pat, trying to help. That really touched my heart.

Um, I THINK that's all I know. This morning Mom already called the office to try to get some answers, and had to leave a message. She said if she doesn't hear back by lunch shes calling to have a nice long chit-chat with their office manager, then calling Dr. Bhatti to see if he can get anywhere with them.

Sorry this is so long. I tried no to leave anything out! If you come across any questions, ask, and maybe I'll remember something else!

Well, that was all on Tuesday, February 9th and I wrote that message to people the next day. By the end of the day I was talking to my Mom during a break in class, and she told me she had gotten the test results back. Pat had tested negative for Multiple Sclerosis and positive for Leber's.

Honestly, I wasn't thinking of myself at all at that point. I was just SO incredibly thankful that my brother did not have MS. My brother is athletic and losing control of his nerves and his muscles would literally kill him. Your eyesight is precious...so very precious...but if you want to be realistic, Leber's is the lesser evil here. It's something that is devastating and life-changing but it also is something you can learn to live with.

So, this is what went on last week. Going to Duke and learning of Pat's (and ultimately now my) diagnosis. You can see now why it was so emotionally exhausting.

Thank you Lord for answered prayers

I really don't know where to begin. This has been a very emotional week for me and my family. First of all, I want to say a big thank you to all of you who have been praying for my brother, Pat, and our family. I am a firm believer that prayers are heard and prayers can heal! I want to thank those who have prayed for and laid hands on my brother at Covenant Bible Church, and ALL the hometown churches that have added Pat and my family to their prayer lists. First Baptist Church has also done an exceptional job expressing their concern and letting us know that we are in their prayers. For that I thank you! Saying "thank you" really doesn't express my genuine appreciation but I still must ask that you do not stop praying. I don't want to say "now more than ever" but now would just a much needed time for us to be lifted up in prayer. For the longest time we have prayed for answers, good answers, or at least answers we can handle....and, sure enough, as always, the good Lord provided! It has been over six months and we have found our answer! It's not the best answer ever, but thank you Jesus that it is not the worst answer either! For that I am forever thankful!

Now, I know not everyone who reads my blogs knows what is going on. I'm not big into secrets and know that for some of you who are reading this, you're just simply curious. I'm sometimes the same way. I will say to you, those who are taking the time to read this, that I am cutting the sarcasm off for the night, all joking aside, and sharing with you something very personal. In return, I ask that after reading this, you take a moment to lift my brother and my family up in prayer, and if you aren't religious or spiritual, then please, keep us in your thoughts and learn from our story, not taking anything in life for granted. Right now I am praying for hope and help for my brother. I can't imagine losing something as precious as my eyesight, even though I have to come to the realization that I, too, one day may as well. I am praying for the Lord to make a way to help my parents afford all the tools that Pat will need in his near future and for Him to heal our hearts and begin to see the will He has for us all. I have always said (almost cliché-like) that everything happens for a reason. No, it wasn't some sappy quote I got off the internet. It's a way I like to look at life, and God's will. I am positive that God has a perfect plan for us all, far beyond our comprehension--a.k.a. "a reason for everything," even this. This is not something that my brother, myself, or my family can not handle, with God's help. I am leaning on Him during this time and continuing to have faith!

The Atheist and the Bear

An atheist was walking through the woods.

"What majestic trees!
What powerful rivers!
What beautiful animals!"
He said to himself.

As he was walking alongside the river, he heard a rustling in the bushes behind him.
He turned to look. He saw a 7-foot grizzly bear charge towards him.

He ran as fast as he could up the path. He looked over his shoulder & saw that the bear was closing in on him..

He looked over his shoulder again, & the bear was even closer.

He tripped & fell on the ground.

He rolled over to pick himself up but saw that the bear was right on top of him, reaching for him with his left paw & raising his right paw to strike him...

At that instant the Atheist cried out,
"Oh my God!"

Time Stopped.
The bear froze.
The forest was silent...

As a bright light shone upon the man, a voice came.

"You deny my existence for all these years, teach others I don't exist and even credit creation to cosmic accident.

Do you expect me to help you out of this predicament?

Am I to count you as a believer?"

The atheist looked directly into the light, "It would be hypocritical of me to suddenly ask you to treat me as a Christian now, but perhaps you could make the BEAR a Christian?"

"Very well," said the voice.

The light went out. The sounds of the forest resumed. And the bear dropped his right paw, brought both paws together, bowed his head & spoke:

"Lord bless this food, which I am about to receive from thy bounty through Christ our Lord, Amen."