Awareness

Awareness. I've heard that word more than a couple of times over the past couple of months. The question of how to create more awareness for ALS has been the one I've seen the most. That is a tough chore considering ALS is what they call an "orphan" disease. At any given point in time there are an estimated 35,000 people living with it. But I have also read and heard that that estimate is much too low due to the fact that the disease is not tracked very well by any databases. I definitely was not aware of ALS before it hit me square in between the eyes. I had heard of the term Lou Gehrig's Disease before, and knew that it was a devastating disease, but that was the extent. I always thought that it was an old person's disease. The fact is, most people diagnosed with ALS are in their mid 50s to early 60s. But there is a somewhat alarming trend of younger and younger people getting diagnosed over the past couple of years. Needless to say, I felt alone when I was first diagnosed. I mean, who in the heck gets ALS in their early thirties? The chances are slim to none given the fact that about 2-3 people per 100,000 will be diagnosed. Add with the fact that typically, only a very small percentage of those 2 or 3 people are diagnosed before the age of 38, and you know what I mean. After some Internet research I quickly found out that I was not alone. There are people like me all over the US and the World with ALS. They are all waging their own battle against this cruel and unrelenting ailment. And many of us are trying to raise awareness. Because not only does having ALS suck, but that suckiness is multiplied 10 - fold when you know the doc can't do anything for you. There is no cure for ALS. Their really isn't any meaningful Therapeutic. The only FDA approved drug for the treatment of ALS is Rilutek, which I am convinced does almost nothing at all. I often heard the term 'throwing a cup of water on a raging inferno' used to describe the stuff. The docs give you a regimen of all sorts of vitamins and antioxidants to take, but they can't tell you if they will work. All very frustrating IMO.

Either way, creating awareness is the only way to raise the necessary capital to actually find SOMETHING to fight ALS. I apologize for the rant. I just get a little frustrated sometimes. Lou Gehrig died from this disease around 70 years ago, and today there is still no cure, or even anything to slow the disease and prolong survival more than a couple of months. Really, when it all comes down to it, the Lord's plan WILL prevail. I know getting frustrated and down is natural. But I feel that if you have full faith in His perfect plan, you don't have to be frustrated. Because it is not about you or me, but Him. I am still working on that complete faith and will continue until I meet Him face to face. I will add some links below of some sites you may want to look at. I do not want to use this blog to promote anything, so visit the sites only if you want to.

I do have a prayer request though. My family and I will be attending our first ALS clinic on Feb. 4. It will be the first time we will meet other PALS or people with ALS. This is a little scary because we will see other people with ALS, many in more advanced stages. This will be a once every three month meeting where we talk to other patients and the docs will track my progression, or as I like to call it, regression. I will probably post something after the clinic about how it went.

http://www.tyherndon.net/site/2010/ty-herndon-partners-with-former-nfl-player-kevin-turner-in-fight-against-als

http://www.als.net/youngfacesofals/

New Addition

We found out last Thursday that we have a little girl on the way. I don't ever show an outward preference to anyone about what I want the baby to be before we find out. Truth is, I am always more concerned about the pregnancy going well and there being a healthy baby produced at the end of it. Needless to say though, I am feeling a little excited about having a girl. Not to say I would be any less excited if it were a boy. Okay, I'll stop beating around the bush. I was secretly hoping it was a girl. There seems to be some sort of intriguing connection to me between a father and his daughter. The term "Daddy's Little Girl" comes to mind. I do have a good connection with my son Jeran. But just like me, he is a momma's boy. When the serious stuff goes down, he is looking for momma, not daddy. I don't blame him, there is something more comforting about momma. At least I was that way. I don't know what causes this. Maybe it is the gender difference. It always seemed a little weird talking to Z about the mushy stuff. Little boys are only supposed to talk about the serious, manly stuff with their dads. Things like basketball, football, hunting, etc. But when it comes to sissy stuff, you go to mom. Now, I am being facetious about this (sort of). I may be doing a poor job of explaining this, but nonetheless I am excited about experiencing this "Daddy's Little Girl" connection, whatever it may be. As I sit here today in complete admiration of Jeran while he plays with his toys, my iPhone, and whatever else he can get his hands on as the rain falls outside, I want to say one thing to my daughter. We are all waiting in excited anticipation of your arrival. Especially your Daddy.

Faith

What is faith? Faith is defined as: A confident belief in the truth, value, or trustworthiness of a person, idea, or thing. We have faith in many things in our everyday lives. We have faith that the Sun will rise, faith that our families and friends will be there for us in a time of need or when we are in a sticky situation. Faith that our children or spouses will tell us the truth when we ask them tough or uncomfortable questions, Faith in our sports teams that we root for that they will win. We have faith in God. I have always been a skeptic. I like to have reasonable evidence based on research into something. I find it hard to believe something without some real, factual background. To make having faith more difficult, sometimes our sports teams don't pull the big game out. Or our child or husband or wife might lie to us. Or something devastating happens to us. When this happens we begin to lose faith. We lose faith in our favorite team. We lose faith in our family, and faith in our God. But, still, we always find a way to renew our faith. Because that is how we are programmed. Without faith and hope, we have nothing. Despite the number of times our teams lose, our child makes the wrong decision, a young child dies from a seemingly meaningless disease, or someone you love is diagnosed with a fatal illness, we always renew our faith. We renew the faith in our children, in our teams, in God. It may take longer for some, But everyone, albeit however begrudgingly, seems to rekindle that faith at some point. I believe this is due to the fact that somewhere along the path of figuring out this crazy, wonderful thing called life, we must have faith. Regardless of your intellectual capacity, you will not figure everything out on facts alone. Even the smartest scientists in the world, hell-bent on figuring out how to prove a divine creator was not needed to create the universe, cannot explain their goal. The fact is, at some point even these very intelligent minds have to have faith in their hypotheses.

This takes me to the main point of my post, the most important area of faith we will face in our existence on Earth. This is the faith in a creator, a higher being with a divine plan. I mean, I cannot believe in my mind that we are here just by chance. The more I read into areas such as the beginning of the universe, into theories such as the Big Bang, the more evidence I see that there was a beginning. It all began at some point in time. I believe that beginning is God. Further, the more researchers dive into the truth in the happenings and events of the Bible, the more the evidence points to it being accurate. Now, there are many differing opinions out there, but I guarantee those opinions are based on having faith in one thing or another. As for me, my faith lies with God the Creator and His Son Jesus Christ. Through all of my skepticism, my ponderings on the meaning of life, at least in my small mind, I have found the evidence needed to have faith in God and His Son Jesus Christ. I have faith in his divine plan for all of us. I have faith that He can perform miracles. I have faith that all who pledge their allegiance with Him have great things in store for them! No matter how hard the situation or circumstance may be, I know that great things are coming for those who believe in Him. That is why my faith lies with Him. Without faith in something we have nothing.

Blessed

I am truly blessed. Last night I was thinking back on my life and all that I have been through. I coudn't help but come to the conclusion that the Lord has blessed me richly in my life. This doesn't mean there haven't been hard times along the way. It just means my blessings have way outweighed the setbacks. You see, I have been blessed with many talents. From a young age, I have always excelled at basketball. I recall a moment when I was in fourth grade and we were in a basketball tournament over in Clear Lake. We were set to play a team that looked to be at least a couple of years older than our scrawny little team. Luckily, they showed up late and we were given a little head start. There were eight players on their team and we were given two free foul shots for each player before the game started. My dad elected me to go and shoot the sixteen freethrows. I made fourteen. Now this isn't a regular occurance with fourth graders. Most kids my age would be lucky to make four. As I got older, although I didn't mature as fast as others (I think I weighed under 100 pounds until I was in high school), I always possessed my knack for shooting the basketball. Slowly my body decided to get with the program and proceed through maturity, and by my junior year in high school I had become a pretty good basketball player. I ranked in the top three in three pointers made in the Houston area both my junior and senior years. I played an integral part in helping my team reach the state semi-finals my junior year (as I look back on that season, I can't help but think we were living in a dream. No responsibilities, no worries. We practically ruled the town.) I was all district three years in high school (first team both my junior and senior years) All county first team both years. I even got my picture taken and put into a magazine for the pre-season all-state team my senior year. I was all-tournament for the 4A classification when we went to Austin. I had my fair share of colleges calling and sending all sorts of stuff. To add to my basketball "stardom" I was pretty popular and was even crowned home-coming king. For reasons unknown to me today, I didn't really pursue basketball after my senior season, but I'll leave that to another blog entry. Even though I really didn't give a full effort to school, I graduated in the top ten percent of my class. Through college I continued playing basketball recreationally, and coninued to excel at it. I was given the gift of basketball. Looking back, I didn't really work that hard at it either. It was a gift. A blessing. Same goes for academics. I never really applied myself, it just came. Today, surrounded by an awesome family, all-star parents, a great wife, and the most perfect kid in the world (with another on the way) I continue to be blessed beyond measure and I am truly grateful.

Now, shifting gears. I wasn't the greatest basketball player or the smartest guy around, but I was talented nonetheless. Thinking back, I can only imagine the number of people in this world who would give anything to have the life I have lived to this point. This disease has made me take a step back and really ponder these things, this crazy thing called life. I know it sounds weird, but I am thankful for that. I can't help but think that God has thrust the weight of ALS on my shoulders for a reason. Maybe it is so I can reach the full potential of who I should be, to understand His purpose for me in this life. Heaven knows I haven't reached it to this point. Maybe it is a lesson to not take things for granted, as I have my whole life without thinking about it. I can convey to you one thing I do believe and know to be true - this is happening to me for the greater good. Because He is Good. It may be for reasons unknown at this time, but for good nonetheless. Pain is not always bad. Sometimes it must be endured for as I have stated - the greater good. As much as we don't like to think about our lives on this earth ending, they will. And either way the number of days we spend here will only be a fraction of a speck in eternity. We must understand that. Working to become closer to God, who we will spend eternity with is the main goal for us when we are here. Maybe this disease will help me to understand that. And for that I am blessed.