Anybody that has read my blog in the past knows that I am a huge fan of the people that serve in our military. In particular, those that serve in the Special Operations community.
I served in the Navy, along with my wife, and I am a huge fan of the men that serve, or have served, as U.S Navy Seals.
I know that I run the risk of beating this to death, but there is one Navy SEAL in particular who's story I would find almost unbelievable if I didn't know it was true. That is of course Adam Brown's life, which is chronicled in the book FEARLEASS. He gave his life for our country in the Hindu Kush mountain of Afghanistan. Upon reading the book for the first time I sat at my computer wondering how I would get a hold of Adam's family to tell them how incredible his life was and how much reading FEARLESS meant to me. If you have read my blog, you know that I would eventually visit Adam's home town of Hot Springs Arkansas. I took diving lessons in order to dive an underwater memorial that was built to honor Adam. I would get to visit his high school where he played football and also pay my respects to him at his resting place. And last, but not least, I would get to meet Adam's family at a 5K run that was organized to honor Adam and to raise money for charities he believed in. All this I accomplished with the help of my friend, Will Stevens, who is the creator of the memorial. That being Fearless Rock!
Many of the people that have read my blog in the past know that there is more to the story. I am re-telling a part that is missing because without it being written the story is incomplete. It is the story that exists in between the lines. It's a story about a little Warrior Princess. Many other people have their own stories to tell about her and this story is mine. It is critical to include it because many of my activities on social media and the passion that I have for them exists due to the fact that I was made aware. And it was because of her that I was!
I have used this illustration before but would like to use it once again.
Adam Brown was a Navy SEAL known as the Tender Warrior. PLEASE understand that I would never attempt to compare myself to him. I would rather submit that he is an example that any man should seek to follow. In the book FEARLESS, we have the example of Shoes. Shoes? Yes, Shoes!
It’s recorded that Adam was asked by his wife Kelley what he would like in a Thanksgiving care package and he said nothing for himself. Rather, he requested that she buy children’s sizes of shoes and socks and send them instead. You see he noticed, as it was getting colder, that all the kids that he was around at this time of his deployment were either barefoot or had flip-flop type shoes. By the time word passed from family members to different church congregations in the community, the amount of pairs of shoes and socks swelled into the hundreds. While Adam’s teammates were stuffing their rucksacks with extra grenades and ammo, Adam was stuffing his with shoes and socks for kids. So here was a Navy SEAL down on his knees with his rifle slung around his neck, teaching kids how to tie their new shoes! Read it for yourself.
I could never compare myself to Adam and I am not trying to right now. However, I do have sensitivities when it comes to people with special needs and those who are facing, for example, terminal illness. That is why I can spend an endless amount of time reading about the American Military Warrior, all the while having a heart for little warriors who face difficult battles.
So existing in previous blog posts is the story that I have titled “My Fearless Adventure”. But the story as it is, is incomplete. I took two trips to the city of Hot Springs Arkansas to honor Adam Brown and his legacy. However, it was also to meet and honor a little girl that would go on to have a profound impact on my life. She would change my focus and to a large degree, my felt purpose for being on this planet.
And now, to the little warrior that changed my way of thinking and who made me look beyond myself. She is a Warrior and a Princess plus an Angel all wrapped into one! That fact inspired me to write this:
There once was a royal princess named A"Lice Brionne. She was beautiful beyond description. She was not only a princess but she was a warrior too. She fought a brave battle against a terrible monster named Batten. This monster preyed upon the most innocent of beings. A"Lice Brionne would struggle through many battles and the monster would seek to destroy her. Even so, she would become victorious although assuming the title and position of a Most Beautiful Angel. Angel Ali as she had become, had others in her royal family. Princess Sophia and Prince William, just to name two.
Even though her mother could have cowered under the pressure of immense grief and despair at her loss, she bravely decided to continue the battle against this monster that would wage war against so many little warriors. Her mother continues to fight so that this monster called Batten Disease will be defeated, but she cannot win the battle alone. She needs an army of angels!
A"lice Brionne Vise (Angel Ali) fought bravely against Infantile Batten disease and was given her heavenly reward at age seven. Angel Ali lives on and actively inspires her earthly angels in the in the battle that continues!
As I said at the beginning, I had taken diving lessons in order to dive an underwater memorial, dedicated to Adam, that is called Fearless Rock. I found out about Fearless Rock, and it's Facebook page, through another page that is dedicated to Adam. I was on the Fearless Rock page one day when I saw that Will Stevens, it's creator, had a post about a little girl and her mom. It was none other than Donya and her daughter Ali Vise.
It was Fearless Rock that led me to Ali’s page which is called Ali’s Angels. I was immediately taken aback by the pure beauty that flowed from the photos of Ali and Donya together. One look and I was done.
I should stop and tell you that I have a wonderful wife. I am proud to say that we have been married for 35 years now. I wear that like a badge of honor. She trusts me. I have shared almost every picture of Ali with her, as well as, significant verbal exchanges between me and Donya. I do this to keep myself accountable to her. I am the big Facebook person in the house but we are in this together. I have previously stated that it is because of my son Benjamin that I have a sensitivity to people with special needs. I have also said, half-jokingly, that I have a thing for little damsels in distress. So there you go, I said it again. I’m a guy who just keeps it real. And you know what? It's true!
So I sent Donya a message saying hello and to tell her what a little doll Ali was. I also sent her a picture of Benjamin. Donya told me that she actually spent some of her high school years here in Oregon, which I thought was cool. After that first exchange, she sent me a friend’s request. The relationship between our families started to grow, although it was on-line. I know that each one of Ali’s Angels has their own story to tell. That is how our story began!
Our involvement with the Ali’s Angels begins there. There are so many people that got involved. We did our part as best we could. Outside of God and country, my family of course, I have never attempted to pour myself out like I had with Ali’s cause. We are not alone in this. There were and still are so many generous people involved. At its peak, the Ali’s Angels Facebook page had 134k likes. The number of likes on a Facebook page is not as important as the impact that it makes. Imagine how many of that number talked to friends and family about Batten disease! How much of an impact must have taken place in spreading awareness. I can also tell you that there are many a friendship that has begun because of Ali. I know this is true for those who have followed other of these little Batten warriors. These kids bring together people from all over the world through social media. Whether it be childhood cancer warriors, kids with Mito, DIPG, and other childhood diseases, people are drawn to these kids and as a result, drawn to each other.
One thing has led to another. Because of the fact that one remarkable little girl made me aware, my life has changed. I want to be an advocate for kids with rare and fatal diseases. In fact I already am! I plan on talking more about my trips to Hot Springs as they relate to Ali and her family in my blog and the impact that this has all had on my life. I would rather though, that you see it as I continue to write. You see it was on the historic streets of downtown Hot Springs that Donya Catlett suggested that I blog about my desire to honor Adam Brown and to see Fearless Rock, the underwater memorial, first hand. I am a blogger today because of that exchange with her. However, I learned that I love to write because of expressing myself through Facebook posts about Ali, Donya and the battle that they faced against this monster called Batten disease. To some this may seem over the top, but I am including a post that I have saved. I titled it Fingerprints and it definitely conveys what I was feeling at the time I had written it:
I searched the internet for quotes on fingerprints and this one seemed to convey the thought that I would like to share:
“Our fingerprints cannot be erased from the lives of those we have touched”.
We were at church the other day where they were having a baby dedication for two families that had new little ones. I have witnessed countless dedications in the past and so this one was just another of many, no big deal. But as I listened to what was being said, thoughts of Ali and her family crept into my thinking and I began to well up with the emotion that should have been there to begin with.
I thought that this was surely the type of thing that Donya had envisioned for her life (forgive me, I know I am taking some liberties here). I think that it is very possible that she had desired a basic kind of existence in middle class suburbia, raising her two children in the church and watching them grow and prosper just as any parent would. But this, apparently, was not God’s complete plan for her.
She has expressed to all of us on several occasions how much she misses her Mini-Me, and who could blame her. I think all our hearts ache along with hers, although not to the extent that Donya’s and her family’s hearts must ache. But I believe in my heart that God has great things in store for this mom and family that we all care so much about.
As for Ali, she is doing MORE THAN just fine and I am amazed by the following that has been created by Donya’s desire to share this precious little girl’s life with all of us. Ali’s following has spread throughout these United States of America, and not only here in this country! I know of people in England, South Africa, Norway, and Puerto Rico, just to name a few. I am sure that there are others in far away places that I am not aware of. Together, we desire to keep Ali’s legacy alive and well. Some of us are near, and some of us are far away but we all stand by Donya and her family’s side with unending prayers and well wishes.
I guess my point in all this is that out of this devastating loss, a movement of followers has come about. Our lives are marked by the fingerprints of this little girl and they can NEVER be erased!!! I can’t overemphasize the point that this story is not yet finished and we all look forward to seeing what comes next! In the mean time….....we have these fingerprints.
And you know what? Ali's fingerprints will in fact never be erased from my memory nor will the impact of her little life on mine be forgotten. For me, Adam's and Ali's lives will always be intertwined in my consciousness. Two local hometown heroes. One amazing Tender Warrior and one amazing Warrior Princess. Both will continue to have an impact on the people of their hometown, as well as, the lives of people all over. And that would include mine!
I have more to write...
By the way. If you want to learn more about Ali and Batten disease, feel free to visit her page:
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. Let it happen!
I would like to welcome to my blog Sanfilippo families, as well as, families in other MPS communities. I am grateful for every opportunity to write about those who battle an MPS disorder. This, of course, alongside their special children. This is a labor of love that is extended to each one of you! Scroll down to see MPS family titles.
Highlighting a previous blog that might interest you:
Forever Royal - The Final Version
One child in a family with a rare disease is a challenge. What if there is two? Heartbreak multiplied you pick up the cause and do your very best to make a difference. That is how a normal family becomes Forever Royal ...
Take the titles listed below and go to month and year listed in the archives.
January 2017 -
*The Story Between The Lines
February 2017 -
*I Know Just Where You Are
*My Kind Of Royalty
March 2017 -
*The Caring Type
*Face to face: A Fairy-tale
April 2017 -
*No Ordinary Love
*A Rare Friendship
May 2017 -
*Tyrell and The Rare Love Story
June 2017 -
*Seth and The Healing
July 2017 -
*Little John and The Reason
*Sands and The Scottish Princess
August 2017 -
*A Rare Kind of Devotion
*The Giggle Box
September 2017 -
*Sweet Montanna and The Status
October 2017 -
*The Blog About My Blog
November 2017 -
*Lydia, I Love You!
*Kayden And The Change In Plans
December 2017 -
*Those That Are Like Them
January 2018 -
*Nora Skye - I Know Just Where You Are
*Brock and The Priceless Memories
*Jamesy Boy and The Treatment
*The Priceless Princess From Beyond
*Forever Royal - Part One
*Forever Royal - Part Two
*That Kind of Love - Conner's Story
*What I See (She is a Butterfly)
*No Longer Alone - Kristiina's Story
*Things We've Talked About - Oscar's Story
*The Reason Why - Hannah's Story
*Kayla's Perfect Princess - Breanna's Story
*Where Do I Go From Here? - An information only blog
*Warriors Unaware - Mia and Kaleb
*Her Little Story
*Someone Like Raelynn
*Forever Royal - The Final Version
*Awfully Beautiful - The Life of Noah and Laine
*A Lifetime of Love - Tegen's Destiny
*Forever Beautiful - Gabi's Story
*The Miracle Baby - Amelia's Story
*Dylan's Life - A Small Town Story
*Princess Grace and the Challenges
*Anything for Tessa - Her Story
*Haley Bug's Battle - A Family Story
*Journey Unexpected - The Rich Family
Sanfilippo Syndrome and other MPS family titles -
*The Beautiful Light of Haidyn Grace
*Any Distance Traveled - Reagan's Story
*The Missing Someone - Kiernan's Story
Archives - Use title listed above with the applicable month and year.
Highlights from the beginning of 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