Michell’s LHON Blog

April 4, 2010 :)

Oh my goodness, it just cracks me up how I’m always behind time I suppose. But its always nice to look back and write about all that has happened.

Sunday, April 4, 2010 might seem like an ordinary day to soemone, but to me and my family that was an important day in my life. It was Easter, and my dad and I took the step to get baptized. We were both baptized at Northside Christian Church on Easter Sunday. It was wonderful!!!

I’ve been going to church for about the last 6 years and have grown a lot in my faith these last few years. At first, I was all into it when my mom decided to take us to church. I was just willing to go, and tried to listen to whatever they told me. In the beginning, it didn’t really make sense to me…

Then when I was in the 8th grade, I decided to volunteer for our Children’s Ministry in the Nursury/Toddler Room. I started out by volunteering their once  a month, then twice a month…eventually became once a week or more. I develped a love for those children I cared for each week, and learned a lot from them as well. Through that experience, I develped a geater love for God. I met a lot of people who volunteered there and had a strong faith. It made me think about everythign in my life…\

Even though my faith had started to develp them, that still wasn’t enough. I just needed more. I knew in my heart I didn’t believe and trust God with all my heart. So, it was summer before my Freshman year in high school…I was going to go to a brand new school with all of my old friends, Clovis North High School. And I took a step up and decided to join the high school youth group at our church. I didn’t know anyone at first, but that didn’t stop me exactly. I was determined to meet people and learn more about God, and of course I did. I just wasn’t feeling the whole youth group idea. But after awhile my attention caught on. And I loved going to church! i looked forward to go to church and volunteer, going to youth group afterwards, and on Wed. night youth group. And once a week I’d have a small group with a bunch of girls my age. It was always super fun!!!

At this pint, life was pretty good actually. And then middle of spring semester of my sophomore year I found out about BeikeBioTech and the wonders that stem cells may do for me and my family. i took that leap of faith and decided to go, even though it was somewhat of a struggle convincing people that this was the best thing for me at this point in my life. I knew in my heart I wanted to go no matter what happens, and knew it woudl be a good idea. I prayed about it all the time. And I had everyone I knew praying for me. God does wonderful things, when you have the power of prayer.

I learned a lot while I was in China. I learn a lot about God and myself as well. There was many families who were in China to try to get a better quaility fo life for their lvoed ones, and had a purpose. Most of them were Christian, and taught me a lot just by listening to what they had to say on a daily basis. Being a foreign country definitely changed my perspectiv eon thigns. Each day I woudl pray about anythign and everything. I don’t think I’ve prayed so much until I was there. I prayed every chance I could sometimes. I prayed in the morning, before each meal, before each treatment, during the day, and of course before I went to bed. It was nice, because I was also given the oppurtunity to pray with my mom. It just made our prayer twice as strong. I learned how much I had and shoudl be greatful for so much in the world. And to trust God to keep me safe whiel in Chian. I can just go on and on about all the amazing things God has done in my life while being in China.

Not only that, but I came back to the US after a month. I was able to connect with many people affected with LHON and learned about their sufferings and stories. I didn’t realize how much easier I have it than so many others. I became really close with some of th epeople I was able to come in contact, which I am blessed I know. I also learned that many who had LHON were also strong believers of God in one way or another.

And even things have been hard with my family, friends, school, etc. I still believed in God and prayed to him all the time. If ever something bothered me, I wrote it down in a journal, or prayed about it. It didn’t matter when or where I was. I always found the time to pray about anything and everything.

Anways, basically I’ve gone through a lot in the past 6 years that I can even beginning to go into too much depth about. This was just the jist of my lfie in a nut shell. Through all of these good and bad times, I felt a closer connection to God and felt the urge and desire to get baptized.

So, on Easter Sunday in front of the entire congragation, I got baptized by my high school pastor, Pastor John Richardson! It was a moment I’ll probaly never forget.

God is good!!!

Add comment May 17th, 2010

About 10 Months :)

It seems like yesterday since I’ve been in China overgoing these stem cell treatment, and not sure of whats going to happen. But now that I think about it, its been a little over 10 months already! It’s crazy to think how quickly time flies by.

Well, at this point, I probaly won’t see too much of an improvement, since this is when doctors said I’d probaly seeing improvements, because the stem cells are now fully matured. But I’ll still never stop hoping that my vision will get better as the days go on. There’s a lot of hope that goes through the power of prayer.

People have started to realize that my vision will probaly stop improving at this point, and have taken the time to ask me how I’ve been doing and what my vision is like. I still haven’t made an appointment to visit a doctor, but I plan to sometme in the next few months. I am as eager as anyone to know what my acuity is now and how well my vision has been since I last went to the doctor.

For myself, I think my vision has been alright. I think it can definitely be better though. But I’ll probaly always say that until I can do all the things I want to do in life. I know and understand that I should be happy with whatever improvements I have, and don’t get me wrong…I am so happy I took the chance to go to China and be the first patient with LHON to take that risk. And I’m happy I saw some sort of improvement, so I can be here to tell my story to other people now. I believe there was both a good and bad of goign to China. And I don’t regret any of it what so ever.

In school I’ve been lucky enough not to use Braille anymore. I still know how to read in Braille of course, but I won’t need it to read all my materials like I previously did. I am fully capable of reading in Large Print, and depending what it si already, I am able to use the regualr copy. Also, on lined paper, I am able to write straighter on the lines, because my vision is more focused on what I’m doing. And people who have been used to seeing my handwritign before have noticed that I write a lot bigger. I sued to write so small that no one was able to read my handwriting. And now that I was able to see better, I write so that I myself is able to read it. And teachers who are very observant or know me pretty well have even noticed the fact that my vision is somewhat better or I do things slightly diffferent. It’s wonderful to know that other people notice these slight and suttle things without me even mentioning it to them.

At home, I ue the computer on a regular basis of course. And I sometiems still have to use my supernova, but thats not a big deal too much. I have come from usign it at a 2.7x to a 1.5x. It might not seem like a big difference at all, but if you were to see the magnification difference, you’d be surprised. It’s amazing…!

It’s interesting when I always notice a suttle improvement or difference in my vision that I didn’t notice before. Hmm…little things would be like being able to read a sign while walking around the block, being able to see the traffic lights, walking down stairs more confidently and quickly. These small things might not seem like a big deal to many, but many also don’t know what visually impaired people have to go through on a daily basis. Anythign that can make one’s quality life better is always a plus.

I still want my vision to be even better. Sometiems I think about it, and it sounds selfish of me, but I just can’t stop thinking how differently lfie would be if my vision was better. I know and understand that it will never be like it sued to be, but still…it never hurts to hope.

For now, I shoudl be blessed with the vision I have. God has constantly been challenging me in my life, and using me in more ways than I can imagaine. I shoudl just live in the moment, and not worry too much about the future.

1 comment May 17th, 2010