Reflecting on the Year 2010

I had to take a moment to go back and look at my blog from last year, reflecting on the year 2009. It brought a smile to my face seeing the positivity I brought into the year 2010. I {mostly} love the year's end, ringing in a new year, reflecting on the past year and what all it brought. This year is no exception. The difference in this year & the last is, as sad as it is, is that I will need to make a solid effort to bring that much positivity into 2011. But no worries there...I'm already making an effort to make sure that happens! :)

If you know me personally, you know this has been a trying year for me. I won't begin to list the reasons why- but if you know me, you know this has been one of the hardest years, if not the hardest, for me and my family. I have learned so much about myself, life, love, and family.

I see the quotes on the cute signs at Ross. I hear the sayings. I've heard it time and time again: Family this, and family that. If you don't have family, you have nothing. Family is all you've got. Families are forever. Maybe it's because my family and I have had a very trying year, or maybe it's just a big 2010 fad, but I have not quit hearing about *family* this year. I'm not saying it's a bad thing- but it definitely got me thinking.

Family is your blood. Family is your siblings, your parents, your grandparents, aunts, uncles, and cousins. Family is who you spend the holidays with. But what about who you spend every other day with? My family has definitely grown this year, and so has my definition of family. The Lord has blessed me with some fabulous friendships this year, with friends I now consider family. I am amazed at how a friend can brighten your day, be there for you, and share in your moments of joy. The support I've been shown from my family this year has meant the world to me. I have not once taken it for granted because I know how friends change with the seasons at times. I am simply thankful for the family God has placed in my life this year, and hope that they continue to stay family for years to come. If not, that's life; that's understandable. I will look back on the times I have spent with these friends and smile because I sure enjoyed every minute! :)

That's another thing I've learned this year: Friends are here for either a reason, a season, or a lifetime. I am no longer bitter or sad about the friendships that I no longer have. I miss some of my old friends but realize that "life happens" and sometimes people simply go separate ways, for no reason at all. On the other hand, I am so so so thankful for those "lifetime friends" that I have. It means the world to me to have friends who are still your friends no matter how far away they live, or how busy their life gets. These are definitely part of the "family" mentioned above. :) God did not give me a sister {probably with good reason} but God has provided me with friends who I can definitely say "love ya like a sister" to and mean it!

What else have I learned in 2010?

Take advantage of a good sale. It won't always be there tomorrow! ;)
But don't buy something just because it's on sale.

I shouldn't always say what's on my mind.
But also, people can't read my mind- so I need to be informative at times.

Don't judge someone by what you've heard about them. Get to know someone personally. Making a new friend is always better than thinking not only negatively, but incorrectly, about a person.

And lastly....I learned to quit anxiously awaiting things because it is is based around God's time, and His perfect plan. It doesn't matter when I think I want or need something, but only when God believes I am ready to receive my blessing. There is nothing I can do to fast forward life to an instant blessing. Sometimes it takes time, and lots of it- but with that time comes learning experiences and life lessons for the future. And for that I am thankful.

I am also *very* thankful for these sweet moments I will not forget....2010, you weren't such a bad year.

My new favorite Facebook group*

A couple of days ago, something popped up on my Facebook newsfeed. It was a Facebook group called "Praying for Pat Sykes." Of course I clicked on it, and a lady named Candy from my home town had recently made the Facebook group to ask people to pray for my brother.

Why you ask?

Well, first, I was deeply appreciative of Candy doing this.. especially since it's been two months since Pat's diagnosis. So Candy, if you see this, {again} THANK YOU!

I think it's extremely important to continually pray. Our family and Pat's friends prayed for an answer, to find out what was causing Pat's blindness. Just because we now know why doesn't mean we can stop praying. I keep praying for healing {always, no matter what the doctors say}, coping skills, the tools he needs to help him, good influences for friends and friends that will selflessly help him with everything, and just a peace beyond understanding. I pray that one day Pat can use this this happening to him to glorify God and show everyone that with faith, he is not stopping. I will not stop praying for Pat.

Anyways, I did not post this to publicize the Facebook group, even though that may happen. I already invited every Facebook friend I have anyways yesterday. The whole point of my post is this-

the group now has 415 members!

That might not be a lot to you, and some people may have just added the group because I invited them. {However, I know some people declined the invitation.} But either way, the group raises awareness and will lift the numbers of prayers for Pat going up- and that's all that matters! I appreciate all the people posting comments on the group's wall to Pat. I'm sure he's read/will read them and I know it'll mean a lot to him. 

I just am so grateful for everyone's kindness and inspirational words. It all makes my heart smile. :)

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! ♥ :)

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!