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."

"So far, so good" :)

How cute is this?!  Check out this clip from the Bonnie Hunt show, where you hear audio from a five year-old's 911 call in an attempt to help her dad who is having trouble breathing! "So far, so good!," she says. :)