Monday, June 29, 2009

I Am Potential: The Family's Views On Coping With the Difficulties In Life

Welcome back~

As I gear up for my vacation, I am trying to catch up with my posts for the week. I kept putting off posting because I didn't have anything newsworthy to mention for Monday and I hoped something would become available for my disability Google alerts. But it hasn't happened yet and I am running out of time. As a result, I am posting two discussions on Patrick Henry' book, I Am Potential. The first, continuing his book review with a primary focus on what it means to cope with a situation. According to, coping as defined as "to deal with and attempt to overcome difficulties". But as I have learned from the Hughes family, coping is not necessarily overcoming the problem as much as it is "working through" it.

Or in Patrick Henry's words, "I have learned that when situations are challenging, you have to rise up and keep going, or there'll get you down ." He believes that many of the people he has met feels stuck where they are. These feelings sometimes stem from a fear of failure or getting out of one's comfort zone. "If you give in to that fear, you might never know how good things could be or the problem might get even worse if you choose to ignore it."

Like many parents, John Hughes and family never really can say they've got it all under control. After all, when you figure out the solution to something, another problem usually rears its ugly head. "So just when you think you've got the big challenges under control, something else props up to prevent your complete sigh of relief.. all of these things make coping anything but easy. But you have to always to moving ahead with the belief everything won't get better without you doing everything possible to make it so..."

In these circumstances, the Hughes family was never alone- even when they thought they were. John Henry reminds us, "God is there, waiting for an invitation to intercede. It may not come when you think it should or in the form you have requested, but exactly what is needed always arrives at exactly the right time."

Friday, June 26, 2009

Discrimination still exists, but it all stems from not understanding a person's disability

Hey Guys~

Okay, so I realize I am a week behind. But I have kind of developed different priorities this week. After visiting my friend and participating in her last musical recital, I continue to be amazed at how much things change- no matter how much we don't want too! But that's a part of life, I guess; learning to accept those changes and adapt to them. To be honest, that's the lesson I struggle with most in my current circumstances. I'm seeing my friends go out into the world and succeed and then I look at myself. My success is minuscule, compared to theirs. I just wish I was doing more. But then I am reminded my success is on a different standard as the world's . As a result, my dad has encouraged me to continue writing my book. It has been going well, but I am beginning to wonder whether my purpose has changed

Anyway, that's where my head is at right now. After I finish these updates, for this week and the next, I am planning to take a break for a while as I will be unavailable. I don't know how feasible it will be to update for the next three weeks.

Now, on to today's post, I actually came across this article thanks to one of my readers. At times, articles like these remind me that we are not living in a perfect world. As much as we would like to say that people with disabilities are not discriminated against, that's not always true. This article proves that. In summary, the article tells the story of a young boy who is acting out in the classroom. In response, the teacher along with his classmates "voted" him out of the classroom as a discipline. It was later discovered that the boy had autism. The teacher was later suspended, but most recently, she was reinstated.

Here is the full article:,0,6421556.story%20say%20no

Monday, June 22, 2009

The web isn't just for people in wheelchairs anymore!

Hey Guys~

As I have tried to point out, the web isn't just for able bodied people anymore. Over the years, technology has made it possible for people from all walks of life and disabilities to share their stories with others. Whether it is because of software that enlarges a page's font or simply reads the content to the participant, technology continues to amaze us. But in order for everyone to enjoy cyberspace, there are a few things to remain aware of:

1.) Perceivable- content must be clear to everyone

2. Operable- your website must be easy to navigate and find your way around, accessible by all types of software or platforms

Understandable- your information must be easy to understand by all ages

Robust- software must be current and interface with the newest of technologies

For more details about website accessibility, see the following page and click "Web Accessibility"

Friday, June 19, 2009

Where have I been?- a personal note


So I realize it has been over a week since my last blog post. Surprisingly, I find my summer becoming a lot more hectic than most. During the past week, I have interviewed and trained a new personal assistant, had my last occupational therapy appointment and gotten little sleep. The therapist wanted me to be able to wear my hands splints at night or a majority of the time . In the midst of all this, my family and I finally hit a wall - we can't do it all. As a result, I kind of slowed down and lost my motivation. But then again, I'm only human. Now I'm trying to get back in the swing of things. Thanks for staying with me!

Best wishes,


Wednesday, June 17, 2009

Encouragement: Patrick Henry, part two

Welcome back~

First off, I would like to begin this post with a message of thanks. Because of my busy life these days, I don't always have the time to look at my blog and reply to the comments I have received. But what I do have the chance, these comments give me hope and a reason to keep writing. So, loyal readers, thank you from the bottom of my heart. No matter whether we are strangers or friends, you are all a part of my life now. Thank you.

I figured since I started the Patrick Henry book review on Wednesday; I may as well continue it as part of the Wednesday series. After all, he is a source of encouragement after what he's been through. My last post about Patrick Henry takes us to chapter 2. This chapter begins with two appropriate quotes about change and acceptance. They are: "Do all you can to change what you can" and"God helps those who help themselves". This was something that Hughes family tried to live by during the first couple years of Patrick's life. During that time, Patrick Henry endured several surgeries: many were in a effort to improve the appearance of his "eyes". Born without eyes, the sockets had not formed properly, so if he was ever going to get some cosmetically, the muscles had to be stretched over and over again. During each surgery, the diameter of the sphere would be increased, so that eventually an ""eyes" could be inserted.

The first surgery for his eyes went according to plan; but the family was tested when they encountered complications during the second surgery to increase the size of the spheres. Patrick encountered an infection and wasn't able to eat for several days. His parents became worried. Was this how things were going to be from now on? Their happy-go-lucky son had disappeared and this was what they were left with. It wasn't fair. John Henry's response: "I knew that in the grand scheme of things we're never promised life is going to be fair, but this was going to far. At that moment, the comparison of what life had been like with Patrick Henry to what it might be was devastating.." While trying to eat at a family restaurant, everything changed though. Patrick Henry smiled and began to eat. "It was as if he had been lost in the desert and couldn't get enough of anything," he explained. Their son was back. If this had been God's way of making sure the Hughes family remained thankful for everything they had, let it be.

"It was a valuable lesson and reinforced how abundantly blessed we were to have Patrick Henry in our lives.. he [Patrick] had been the center of our universe and when that was taken away, a black hole had opened up.." John continued.

As well as his "eyes", the Hughes family did whatever they could to improve Patrick's arms and legs. This included arm splints and surgeries. It was later determined however that nothing could be done because their son have little to none growth in his legs. Like the rest of his body, it had not formed properly, leaving the necessary bone structures to walk.

His last surgery was at the tender age of 10. This time, it was for the scoliosis in his back. Not only would this surgery correct his back problems, but it would also add a couple of inches to his stature. This excited Patrick because he would finally be able to accomplish a lifelong dream- riding on a roller coaster

Patrick's back surgery was a success and recovery went swiftly despite an accident leaving one leg broken and in a cast.

Stay tuned as I continue to summarize the miraculous story of this young man and his family

Monday, June 15, 2009

A Lesson Of Faith

Welcome back~

I hope everybody enjoyed their weekend. The weather was quite pleased down here for a change. It's hard to believe summer is actually here; it's been a long time coming. I have a lot to look forward to this summer, including going to a good friend's recital as well as a cruise. In the midst of it all, I have hand splints and therapy sessions to go to. Through it all, I try to put my best foot forward. But is it enough?

At times, I really don't think it is. I'm not just talking about physical therapy or even splints. But of life in general. Do I actually spend time acting on faith? In truth, I don't think many of us have-myself included. The few that do take it to run with it-knowing that God will provide whatever is needed or that he will make a way when all seems lost. Take my friends serving as missionaries in Panama.. or the ones that just sit patiently, continuously praying for something to happen in HIS timing. How about their friends that constantly encourage you by a wall post on Facebook or a instant message just to say hello. I am blessed with such friends who are constant examples on acting on faith.

Acting on one's faith is always easy, but that's what it's most worthwhile. I have to be honest that idea for this was not my own. But it was inspired by that of a online friend. In her daily post, she shares the impact of having this kind of active faith.

Wednesday, June 10, 2009

Encouragement: Patrick Henry story part one


So it occurred to me today that I had promised my readers my review of Patrick Henry's new book, I Am Potential: Eight Lessons in living, loving and reaching your dream. I apologize for my tardiness in posting on this topic, but I was hoping for new developments in terms of disability related news. As this did not seem to be happening, I figured this would be as good a time as any. Many of you may remember me talking about Patrick Henry in a variety of blog posts. This amazing young man had overcome so much and done his best to live a life without limits, inspiring millions of people in the process. Born with a variety of disabilities ranging from limited use of his arms to life without sight, the lessons he can teach people are remarkable.

He begins the book with the most important lesson one could learn throughout his experiences of having a disability. That lesson: Acceptance. Not only for himself, but for his parents as well. Or as Patrick puts it, "When life hands you lemons, accept them and be grateful." At first glance, this may seem like an unspoken lesson for the Hughes family, but it wasn't always that way . John had always dreamt of a son who could spend hours with him playing catch, but that wasn't possible with Patrick. They had go of such dreams and hope for the best. After all, "You can't move forward until you accept where you are," Patrick says.

In the face of such adversity, one wonders if things would have been different had they known about Patrick Henry's disabilities. Of course, abortion wasn't an option for them; but would they have handled it differently had they known? Patrick Henry answers the question with something his mom always said, "It's another example of how the best blessings could be right in front of you but you don't see them because you forget that God is always there working things out behind the scenes,"

We've all heard these things before: "God never gives you more than you can handle" and "you have to move on and accept what is ". These are just some of the many pieces of advice that the Hughes family received.

Instead of denying the reality of the situation, they coped and adapted to their new life as a family. John's philosophy was: "If this was a, so be it. We'll survive; no, we'd do more than that . We'll do all we can to make the situation better. I felt that in my heart but I truly had no idea of the magnitude of our challenges.."

After all, what does wishing do? It gets us no where.

Stay tuned for more inspiring quotes from the book in later posts. I apologize if everything seems disconnected, but I am trying to bring you what I thought was most important.

Monday, June 8, 2009

Finding Myself Again

Hey Guys~

Another week and I seem to be behind again. Over the past few weeks, my days have been consumed by physical therapy as well as doctors'appointments. Don't get me wrong, I know they are an important part of the "growing" process. But I only have one life to live and can't spend it all doing what is necessary-I have to be able to look back on my life and say I have enjoyed every minute, treating my life for what it is.. a gift! Since moving to Virginia, I have kind of lost sight of this-letting other people help in deciding what's best for me. In the process, I've kind of lost myself.

Friday, June 5, 2009

Special needs college?

Welcome back,

Since I'm not going to be near a computer this weekend, I thought I would set this post to publish a little earlier. You may have noticed I've been focusing a lot on the importance of an education this week. Partially because it just happened that way, partially because I believe a good education plays a vital role in helping a person become who they are meant to be. The following article highlights an interesting proposal of a college for students with special needs. I don't know whether I agree or not because the idea separates people with disabilities from the real world longer than usual. This may make it harder for them to adapt when it is time to enter the "real world"

Wednesday, June 3, 2009

Encouragement: Overcoming hurdles

Hey Guys~

Since writing about my personal experiences in college yesterday, I found this article quite interesting. Born with CP, eighteen-year-old Jasmine is graduating high school this Friday along with her classmates. What makes this such an accomplishment? For starters, she is unable to speak but uses a computer with a "specially designed device " that helps her press the keys. What strikes me about this article is that some people are still putting limits on us, even though we've proved time and again that every situation is unique and can be overcome. They automatically assume the worst for us.

Good luck Jasmine

Monday, June 1, 2009

It's the simple things of life


Once again, it seems like I'm behind on my posts. There has been a lot of of drama around my household this week, so it's been hard for me to get "quality" time on my computer. But when I did, I just wanted to relax and not think. Long story short, we are on yet another search for personal assistants. Out of all my dreams, I would have never imagined it taking this long or being this exhausting -and believe me I've had my experiences. I've been getting help from personal assistance since I was 18 at least. I hate to admit it, but Virginia has been one of the hardest states to find good PA's.

But I digress..

A while back, I was talking with my dad about how lucky I was to have such a positive college experience. Part of it due to the friendly students and staff. Granted, they were a Christian /Lutheran College-but they went beyond the call of duty adapting their college to make sure I could fully participate. It was during that time that I discovered what was as a person, beyond the confines of my disability. As well as college extracurricular activities, I also became a part of the "7th Heaven" club; this was a group of guys and girls they gathered at various dorms to watch CW's 7th Heaven. These girls often accompanied me, rain or shine, to the dorm just so I could take part. This may seem like a simple task, but it was a constant reminder to me that my disability didn't play a role in my friendship with them. What a amazing lesson, that was for me.

In short, I hope this personal story shows you that the little things in life make a difference. So, if you have a friend who is disabled or struggling, do something to let them know they matter to you today. It doesn't have to be a weekly club, just remind them they matter. You have no idea how it will influence their life in the long run.

PS. I am still a avid fan of the show since it went off the air. And I still keep in touch with many of my friends from the 7th Heaven club today

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