If you have read my blog in the past you already know my story. In fact to some you know it Ad Nauseam (to a sickening or excessive degree). At one time I had titled a series of blog entries “My Incredible Story”. To some it all may not have seemed all that incredible but I felt that it was interesting how one simple occurrence led a series of events that would change my life in a meaningful way. The story went something like as follows:
We were at a local mall visiting a Christian bookstore and I noticed a book that was on display that was called SEAL of God. It was written by a man named Chad Williams who became a Navy SEAL and then would leave the military to become an evangelist after serving overseas. It was a great book and I spent an entire weekend reading it. I couldn't put it down and when I was finished, it left me wanting more. We were at our local super store on a different day and I noticed a book called Lone Survivor by Marcus Luttrell. The book was absolutely gripping and I couldn't put that one down either.
On yet another day, we were at Benjamin's favorite mall and at his favorite bookstore. While there, I was looking in the military section for my next read and I saw a book titled FEARLESS. It was about a Navy SEAL as well so I flipped the book over to look at the back cover. This revealed that Adam Brown of Hot Springs Arkansas, who the book was written about, had some very serious problems. He would overcome them and would go on to become a SEAL only to be killed in action. I can't remember exactly what I was thinking at the time but it was something along the lines that his story ended in defeat. I wanted to read about a person returning from battle in victory.
I put the book back on the shelf and it is possible that I might never have picked FEARLESS back up ever again. Wow! I put it back and would end up buying Marcus Luttrell's second book which was call Service. It continued to tell Marcus' story and would turn out to be another great read. By this time, my reading was starting to be a habit and I thought that purchasing a Kindle was a good idea. I approached my my sweet wife about it (you know it is really women that rule the world) and she said that would be a good idea. After receiving my Kindle, I would go on to read books like The Outlaw Platoon by Sean Parnell. Another great read! I had read maybe one other book after that and I started thinking that it was time to consider reading FEARLESS. I downloaded it onto my Kindle and began my little journey. I was instantly glued to this book as I read what I consider to be one of the most incredible life stories ever told.
The things that Adam overcame just to get into the SEALs was amazing enough. However, the injuries that he would overcome to not only stay in the military but also to make it into SEAL Team Six. They would be unbelievable if not true and they put Adam in a class all by himself. Another thing that connected me to the book was the details of the type of man that Adam was and also the type of family that he came from. I could go on forever but I would just like to make the point that this book stands out as being in a class by itself and it is very possible that I may have never read it. I have read it five times and I know that others have read it more times than that. My only thought after reading it for the first time was how do I get a hold of Adam's family to thank them!
So this is where it becomes even more incredible to me. It was through a series of Facebook pages that I would both learn about an underwater memorial created to honor Adam and also to learn about a princess named Ali. If you have been reading along, you already know many of the details. I have talked about diving the memorial and last week I talked about meeting Ali. Upon our return from our trip to Hot Springs, I was asked by the pastor of the church we attend to send him an email. In it he wanted me to detail what we had experienced on the trip. I ran across it the other day thanks to a friend named Sue! So I thought that it would be kind of neat to share it along with many of the pictures that I took on the trip. Wow, it has been almost three years now but the entire experience has had a big impact on my life.
So as some might find it unfair to make a person sit and watch their families home movies, you might find this equally unfair. I hope not though. I'll italicize the content of the email and change the font color while adding other details. Hopefully this will not make you nauseous.
Sorry it has taken me so long to get back to you. Ten hour work days do not leave me with a lot of spare time.
As I am sure you are aware, I am a huge fan of our military and especially those who serve in the special forces. I have now read several books about those who have sacrificed to serve in these latest conflicts. There are many amazing stories, but none greater than that of Adam Brown from Hot Springs, Arkansas. The person that he was and the things he overcame to serve at the very tip of the spear, is nothing short of incredible.
It was through Adam’s Facebook page R.I.P. Adam L. Brown (administered through his wife Kelley) that I learned about an underwater memorial called Fearless Rock that was being built by a gentleman named Will Stevens. The name of the FB page for the memorial is called: Fearless Rock – the Adam Brown Underwater Memorial.
I have been as big of a supporter as I could be of the memorial long distance and became pretty good friends with Will, its founder. I even went as far as to use the dive patch of the memorial as inspiration for a tattoo that I had done on my right arm. Will Steven’s presented me with the first Navy flag that was flown at the memorial and I had it framed. It hangs on the wall in my bedroom and is a priceless possession.
So I got the idea to take diving lessons so that I could go see the memorial for myself, and to meet those that were involved with it. But there is a little more to the story.
Enter in Ali Vise of Ali’s Angels and her wonderful family. Ali, which is short for A”lice, was diagnosed with Infantile Batten Disease, at age 4. There is no cure for Batten Disease and it is always fatal. Doctors said that Ali would not make it past age 11. In fact she just passed away recently at age 7. Part of our going at the time we did was meeting Ali and her family before it was too late. I failed to mention that Ali and her mom were featured on the Fearless Rock FB page and that is how I became aware of her situation. I sent her mom a picture of our Benjamin and that is how we became friends. We have been financial donors to Ali’s cause in as big of a way as were able and have immersed ourselves in prayer for her and her family. As a result, our families have bonded. In fact Ali’s mom and grandmother are talking about coming to visit sometime. I would consider this a great privilege. You see the Ali’s Angels FB page has received 134 thousand ‘Likes’. Regardless of that, we have grown to love this family.
Anyway, I am including in this e-mail a photo album and a written tribute for Ali that I posted on Facebook. Please take a look. Seeing this much photographed little princess and her family in person was an incredible privilege.
The trip lasted 4 days. We flew there on Thursday and returned the following Monday. It was a whirlwind trip. Friday we were able to meet Ali, her mother Donya, and, and Grandmother Doris (or as she is referred to lovingly, Nini Cat. Their last name is Catlett) for lunch at Applebee’s. This was a real treat for sure!
Saturday was dive day. Will Steven’s picked me up at the motel with all my dive gear in hand. He first took me to Adam’s high school, Lake Hamilton. We got onto the football field where Adam played. This was so cool!
Then we went to Adam’s grave site. There is a very interesting story about his head stone in the book. Being able to see this was so special to me, a very emotional time. Next it was off to dive the memorial. I had a great time of conversation with Will and he also presented me with a Fearless Rock Dive Team survival strap. I wear it proudly!
Diving the memorial was so spectacular. I had seen countless pictures of it but there is nothing like being there. The effect of the magnification by the water is something that is not easily captured on film. To see it in person and actually lay my hands on it was an experience I will never forget.
After diving, we went to lunch at Stubby’s BBQ in Hot Springs. This place is mentioned in the book. Adam worked there when he was down and out. It is also the only place where Will Stevens crossed paths with Adam Brown. Another neat story that we don’t have time for. I had lunch with Brick and Jennifer Smith, two big time members of the dive team.
Let me interrupt the content of the email to mention how sad that I am to know of the passing of Brick Smith. You see Brick left us due to a Sky Diving accident just prior to this blog entry. Brick was an outstanding individual that gave himself to others on a daily basis. He was a nurse by profession and was also a type I diabetic. I am type II. Brick worked, as a professional, with other diabetics in teaching them how to cope with the disease. He was well respected by many. Brick was an experienced scuba diver who had logged well in excess of 500 dives. Brick became a fitness buff and spurred on his fellow Gym Rats to excel in that area as well. He was a member of the Fearless Rock dive team and was a founding member. He helped Will Stevens build and maintain the memorial. Brick was an all around great guy and a very good and active father to his daughter Saxon. Although he had split with his wife Jennifer since the time we met, I know that Jennifer has to be devastated by the news of his passing. He most certainly is greatly missed by his daughter and Will Stevens, as well as, the other members of the dive team. Brick lived life to the Max and went out doing something he really enjoyed. Until we meet again sir, it was nice to spend time with you!
We also met up with Rose Anne Davis who is a really neat lady who I met on Facebook as well. We attended church with Rose Anne on Sunday and also went to dinner with her on Saturday night. So Saturday was very full. Sunday after church, we went to lunch with Rose Anne and one of her friends.
Then we were off to spend more time with Donya and "Nini Cat" Catlett. We spent time walking around the old downtown area of Hot Springs and went over some of the history.
So it was a packed weekend. One I will never forget. I’ll be going back, hopefully this March. They have a 5K run/walk in honor of Adam every year at that time. Lord willing, I’ll be there. This whole thing has been an incredible, life changing occurrence for me.
As I have said in prior blog entries, I feel that it was through this entire experience that I had gotten off the couch and stepped outside the box of life.
The steady drip, drip, drip of normal domestic life was all of a sudden interrupted without me realizing it. It is always interesting how one event can lead to another and that certainly has been the case for me.
I have the very utmost respect for the men and women who have put on a uniform in defense of our country. I especially love reading the stories of those who serve in the special operations community. The amount of skill and training coupled with the danger and sacrifice is unparalleled by any standard. I can't get enough.
Most of my time on active duty was spent in the southern United States and I grew to love the culture down there. I love to go there every chance that I get. To be in Adam's hometown, seeing the sights and experience everything that was brought out in FEARLESS was well worth the trip. I will never forget that extended weekend.
When it comes to scuba diving, it is something that I had never considered doing. The whole thing seemed to be kind of creepy to me and then there are the SHARKS! But I did it and never would have if not for Adam, Will, and Fearless Rock.
And then there are the kids. My heart! I have grown to love the children, and their families, who cope with rare and incurable diseases. My desire is that much of my blogging in the future will talk about the trials that these people face in their lives. This all started with a little girl named Ali who would lead me to follow many others. My activities on social media and my blogging revolve, in large part, around spreading awareness, as well as, bringing honor and comfort to the families of these children. It all began with a Princess named A"Lice Brionne. I have met so many neat people.
That is why I thought that the entire thing and how it all came together was incredible and it all started with a trip to the mall.
“I have an incredible story to tell. It’s not that I have done anything incredible or that I possess any attributes that one might consider to be incredible (I am really pretty regular). Rather, it is that I have had some life changing incredible things happen to me in the last couple of years. It is possible that it all may have never happened and it is interesting how it did. At least it is interesting to me.”
Concerning kids who battle Batten disease (neuronal ceroid lipofuscinoses or NCLs), “Is it them or is it us? Is it the feelings that they produce in us or is it that there is something truly special about them? I think that the answer has to be all of the above. It is them, but they also do something to us. Once you give a little piece of your heart to these kids and their families, they come close to taking all of it.” That is what happened to me!
Hello Everyone. These kids changed my life to a large degree as I was taken over the plight of one little girl. Through these kids, I have learned that it is important to look beyond ourselves and take notice. I've stated that Kids that battle are the most special and the most amazing and I believe that this is true. They are strong and resilient, even if unaware of the plight that they are involved with. I first became aware of kids that battle Batten disease as I learned of a little girl who fought the disorder. She really caught my attention and I began to write through a series of events …. never looking back. Hidden in between the titles of all of the stories is my own. These kids taught me how much I love to write. I’ll never win an award but the kids that battle taught me that I have a passion for sharing their stories with others. They are stories that are full of heartache and grief. From a distance though, you can observe a love that is profound and undying.
I have now branched out a bit to include some of the families whose lives have been changed by having a child who battles MPS (mucopolysaccharidoses).
The science behind how the cells of the human body work is fascinating. That being said, the result of what takes place when those cells don’t function correctly is devastating. Lysosmal Storage Disorders are my area of focus and these two groups of diseases are both LSDs. Perhaps I will add another lysosomal storage disorder community as time continues. Whatever the case may be, this all started because I was made aware of the plight of one little girl who changed me. I hope that you will take the time to look within. Thanks for doing so.
Blogger and Advocate
HOW THIS BLOG WORKS -
Take the titles listed below and go to month and year listed in the archives below (way below).
January 2017 -
*The Story Between The Lines
February 2017 -
*My Kind Of Royalty - CLN2
March 2017 -
*The Caring Type - CLN2
*Face to face: A Fairy-tale -CLN3
April 2017 -
*No Ordinary Love - CLN2
*A Rare Friendship
May 2017 -
*Tyrell and The Rare Love Story -CLN2
June 2017 -
*Seth and The Healing - CLN2
July 2017 -
*Little John and The Reason - CLN2
*Sands and The Scottish Princess - CLN3
August 2017 -
*A Rare Kind of Devotion -CLN2
*The Giggle Box - CLN2
September 2017 -
*Sweet Montanna and the Status - CLN3
October 2017 -
*The Blog about my Blog
*Sebastian's Story - CLN8
November 2017 -
*Kayden And The Change In Plans - CLN3
December 2017 -
*Those That Are Like Them
January 2018 -
*Nora Skye - I Know Just Where You Are - CLN2
*Brock and The Priceless Memories - CLN8
*Jamesy Boy and The Treatment - CLN2
*The Priceless Princess From Beyond - CLN2
*That Kind of Love - Conner's Story - CLN2
*What I See (She is a Butterfly) - CLN1
*No Longer Alone - Kristiina's Story - CLN2
*Things We've Talked About - Oscar's Story - CLN7
*The Reason Why - Hannah's Story - CLN3
*Kayla's Perfect Princess - Breanna's Story - CLN2
*Warriors Unaware - Mia and Kaleb - CLN2
*Her Little Story - CLN1
*Someone Like Raelynn
*Forever Royal - The Final Version - CLN2
*Awfully Beautiful - The Life of Noah and Laine - CLN2
*A Lifetime of Love - Tegen's Destiny CLN1
*Forever Beautiful - Gabi's Story - CLN7
*The Miracle Baby - Amelia's Story - CLN1
*Dylan's Life - A Small Town Story - CLN2
*Princess Grace and the Challenges - CLN2
*Anything for Tessa - Her Story - CLN2
*Haley Bug's Battle - A Family Story - CLN1
*Journey Unexpected - The Rich Family - CLN2
*My Life, My Everything - Lydia Rose - CLN2
*A Love That Hurts - Shashka's Story - CLN2
*The Things Looked Forward to - Addy’s Story - CLN3
*Love Complicated - Bailey Rae's Story - CLN3
*So Many Questions - Evelyn's Story - CLN2
*The Feelings They Produce - Violet's Story - CLN2
*Because of Love - Frankie's Story - CLN2
*The Need to Breathe - Scarlett's Story - CLN2
*The Beautiful Light of Haidyn Grace - MPS3
*Any Distance Traveled - Reagan's Story - MPS3
*The Missing Someone - Kiernan's Story - MPS3
*The Transformation - Victoria's Story - MPS3
*Not by Accident - The Charlie Grace Story - MPS1
*The Difference They Make - Harvy's Story - MPS6
*Love Profound - Veda Rae's Story - MPS3
Highlights from the beginning. When the blog was named gregster60.com -
Benjamin's Daddy - March and June of 2016 - Revised May 2017, titled Benjamin's Daddy Revised.
My Fearless Adventure - April and May of 2016
A Different Type of Warrior - January 2017
Larry - February 2017