 Just me Greg! Oh, and one of my prized possessions. I love the warrior class. By that I mean those individuals that I consider to be warriors. Warriors are those who find themselves having to defend themselves and others who are defenseless and unable to help. Warrior are also those that find themselves in a fight that they didn't ask to be involved with but they fight because they have no choice. They do it with great courage and strength of will and character. Sometimes, they are individuals that have taken up the cause of others at great expense and certain peril. Sometimes, they fight for themselves in order to survive. In my Facebook bio I have written the following concerning myself: “A fan of warriors big and small. Defenders of freedom. Those who are brave in battles of their own” So I love the military warrior class but I also love kids and people with special needs. As well, I love people and their stories when they show great courage and strength under the fire of life's circumstances. There is a warrior mentality that can often be displayed when a situation calls for that extra amount of drive needed to get through extreme challenges. You don't think about opting out. You just endure and move forward.  Read FEARLESS written by Eric Blehm There can be nothing more terrifying, in my mind, than serving in a war zone, outside the wire of a Forward Operating Base. Regardless of how a person feels about war and the conflicts we have been involved in as of late, you have to have respect for the men and women that leave the safety of our way of life to put themselves in harms way. There is nothing like being a warrior in battle for your country. They put aside and suppress their fear in order to accomplish a goal and there is nothing like it. There is however, a scene being played out in cities and suburbs that requires a person to “warrior on” and “do battle” against an enemy that confronts them. It takes place in hospitals and doctors offices. In homes and hospice facilities. Is this a stretch. Well I will leave it up to my readers to decide.  Tommy and sister Tracy In a couple of my previous entries I talked about a man named Tommy. If you have been following along you already know about him. He is the son of one of my dearest Facebook friends, JoAnn Caudle. He, like my son Benjamin, was a special needs adult who functioned at a level much younger than his actual age. During chats with Joann, we discussed how similar Benjamin and Tommy were when it came to their personalities and habits. How funny they both were in the things they did. How much enjoyment we received from having them in our lives. Tommy, though, had some major health issues beyond what Benjamin has. He had an aneurysm that required immediate surgery. During the surgery, it was discovered that Tommy had cancer and that it was spreading throughout his internal organs. How terribly difficult! After consulting with the oncologist it was agreed upon that he could not endure the treatment for the cancer. Tommy was placed in hospice where he fought the cancer bravely. He battled hard and he exceeded expectations but eventually succumbed to the cancer and gained his wings.  Tommy with his orange critter friend. I really felt for JoAnn and her family as they lost the special guy in their lives. It's possible that this could be us someday with our Benjamin. I was heartbroken for them but happy that Tommy was no longer in pain. I was sure that he was in a better place. JoAnn told me that he had been laid to rest with all his favorite stuffed animals including his favorite orange critter friend. When I pictured all that I could feel the tears well up in my eyes. It seemed so unfair that Tommy would suffer like he did, although he is now in a great place. When I look at how much we love Benjamin and how much he brings to our lives it makes me realize how greatly Tommy is missed by his family. Cancer really really SUCKS! Tommy was a warrior of a gentle kind. He fought valiantly and I have no doubt that he has received his reward.  Natalie Avila is absolutely adorable. She has DIPG I love little warriors that do battle with the monsters that make up childhood disease. A person's childhood is supposed to be filled with simple lessons and childlike fun and innocence. Their innocent unblemished appearance often give way to the scars created by the monsters these kids do battle with. They are not suppose to be filled with the stress that is involved in fighting a fatal or near-fatal disease. In other words, they should be free to enjoy the early years of life without enduring such things! There has of course been a lot of progress made in the fight against cancer but there are still some very hideous forms of it that are not getting the attention that they should when it comes to finding a cure. I am new to all this but I have come to find out about a form of cancer, that is especially hideous, called DIPG. It affects mostly small children but adults can get it as well. It affects the brain stem where it becomes intertwined with healthy tissue. Because of the location of the cancer, it is at this time near impossible to treat. Their is no cure and the number of cases is climbing. When it comes to funding research nationally, less than 1% goes to DIPG and only 4% goes to all childhood cancers. More needs to be done. Don't you think?  Stephen and family - Hey is that the Green Monster in the background? I “stumbled” across Stephen Pecevich's profile on Facebook because he was a mutual friend of other people that I know who have accounts. I sent him a request for friendship and he accepted. Since that time I have come to know Stephen as a man who I would do well to emulate in my own life. Stephen, as I have observed him, is a gifted communicator through the way he writes, both in word and lyric. He also communicates through the example that he sets as a parent and a human being. Stephen is the parent of three attractive kids. His daughter's names are Sydni and Tari. He also has a son named Tristin. It's the love that exists between him and his children and the bond that he shares with his daughter Sydni that really shows me what type of man he is. Sensitive and caring while also being strong in his character. You see Sydni's life was greatly affected by the cancer she fought from and the results that ensued. She is a warrior of a different kind. Stephen describes the type of struggle that they have been through: “On January 14, 2005, Sydni underwent a twelve hour brain operation in order to remove an aggressive form of brain cancer called an Immature Teritoma of the brain. Since 2005, Sydni has had 30 brain surgeries in total, she has endured through more than 40 surgical procedures, and she/we have spent approximately 1,000 days in the hospital for one reason or another.”  Sydni you are beautiful? As a result, Sydni cannot walk or talk. She is feeding tube dependent and has cerebral palsy. Sydni has ongoing seizures and is classified as being spastic quadriplegic. Stephen states that she does have cognitive ability and a most vibrant personality. To me, that's easy to see. She is darling! Sydni's smile is infectious and I love the ways her face beams when she is looking at Stephen. The pictures that he shares easily portray the love that exists between Sydni and himself. Stephen's life was forever changed by the circumstances that confronted him in his daughter's situation. On a day in March of 2005 when Sydni's survival looked almost hopeless Stephen made a promise to Sydni before God. He describes the scene like this: “You see, that was the day that changed the course, and perspective, of my life. I now saw the world through altered eyes. For on that fateful day (amidst my extreme heartbreak and gut-wrenching fear … whilst I was cradling Sydni in Room 906 at Children’s Hospital Boston) I whispered in her ear and promised my daughter that if she would just give me an opportunity to be a father; that’s all I asked for – simply the chance to be a loving Dad to her – then I avowed before God in that very hospital room to love her no matter where the fates may take us. I gave my word that, if need be, I would be my daughter’s legs to walk, her eyes to see and her hands to eat.”  And so what appears to be an inseparable bond between Stephen and his daughter was cemented in the circumstances of the battle created by her cancer and subsequent disabilities. Stephan refers to Sydni as his “Earth Angel”. That she is one is easily recognizable by looking at her photos. I am sharing the link that will take you to the entire article entitled A Father's Promise, so that you can read it in it's entirety: http://www.jhextramile.com/a-fathers-promise/ You might want to keep some tissues handy ladies. If you're all out, you can borrow some of mine! In the article Stephen says, “…...As the calendar of life continues on, the innocence and purity within each one of Sydni’s smiles reminds me every single day that, despite the all too often stumbling blocks that I have now become accustomed to, life doesn’t have to be picture perfect in order to be experienced as a most magnificent journey!” Sydni is a precious warrior and Stephen is a warrior father. I look forward to continuing to follow Stephen and his family in their remarkable journey. I was treated for Hodgkin's Disease when I was 26 years old. The year was 1986. Hodgkin's Disease is a form of cancer that affects the lymph nodes and it spreads to different areas of the body via the lymph channels that run throughout a person's body along with the cardiovascular system. The stage of the cancer is determined by, of course, the distance the cancer has traveled. I discovered lumps on both sides of my neck while I was shaving and decided to go to the doctor. A biopsy was done and it came back positive. The good news was that even back in the 80s, treatment for Hodgkin's had an 80% success rate. That was good to hear but that would also say that not everyone with this form of cancer makes it. In fact, a friend would tell me that he had lost a family member to the disease. I had a bone marrow sample taken (that was fun!) and lots of blood work done. I had various tests/procedures done and I had an operation in my abdomen performed to make sure that the cancer had not spread to that area. After all the testing was completed it was determined that the cancer was only in my neck and sternum and therefore I was only at stage II of the disease. So I was treated with two 30 day rounds of radiation. One in my neck and chest area and the second one was follow up radiation in my abdomen. I was young and strong and the side affects were minimal. Thirty-one years later and I am still here. I have had a couple of scares since then and the radiation that I received has had an impact on my total health. However, like most survivors, I am thankful for the additional time I have had on this planet. I got off easy, but there is somebody I know that is in the process of winning a much larger battle.  Stacy is a Rock-star! Stacy Hurt is a 46 year old wife and mother of two boys. She lives in Pennsylvania with her husband Drew and her sons, Griffin (age 13) and Emmett (age 11). She is a special needs parents as her youngest son Emmett has a rare chromosomal abnormality. It is one of only three known cases in the world, so his "syndrome" does not have a name. Stacy was a career woman as well, holding a double Master's degree. She worked in advanced positions that are related to the medical and pharmaceutical fields. If being busy with a career and family was not enough, she also had to care for her son Emmett as he is totally dependent on others for help in every facet of life. She also took the time it takes to maintain her physical fitness. She's athletic. Stacy's busy life was interrupted by the news that she had cancer. She Had been experiencing pain but initially put off seeing a doctor thinking that she had irritable bowel syndrome (IBS) or internal hemorrhoids. The pain became too much to bare so she sought out her physician. A colonoscopy revealed the most shocking and most unexpected horror imaginable: Stacy had a tumor inside of her so large that a scope could not get around it. A subsequent scan revealed cancer in her liver, 5 spots on her lungs, and 19 lymph nodes. Stacy was diagnosed with Stage IV Colo-rectal cancer on her 44th birthday, September 17th, 2014. She was given a 10% chance to survive 5 years and a treatment plan which included chemotherapy, radiation and ultimately surgery ONLY IF she responded, which was a 50/50 shot in itself. There is more to the story and it includes a mistake in surgery which caused Stacy to lose half her blood volume. She fought for her life in ICU for a week after a 2nd five-hour surgery was performed. Colon cancer is normally diagnosed in people over fifty years old but this attractive and athletic lady in her 40s was forced to fight a battle that she would have never imagined. Can you imagine the struggle of having to endure an aggressive treatment plan such as this all the while maintaining a household and caring for your family? Stacy has had a lot of help from friends and family along the way.  Nice looking family! I personally can remember what it was like to go through radiation therapy for cancer. I was treated for Hodgkin's at Grossmont hospital in San Diego California. I remember that as I would approach the stop light right before the hospital each day, my stomach would become nauseous. It was however, not that difficult. I can imagine the feeling that one experiences when they have to go through a highly aggressive course of cancer treatments. Stacy has endured over 40 treatments of chemotherapy alone so far. The very good news is that Stacy was declared NED (No Evidence of Disease) in March of 2016. Stacy continues maintenance chemotherapy for life and receives treatments every 3 weeks. Stacy's bio states concerning her victory: “She credits her faith, family, friends, positive attitude, and integrative oncology modalities for her remarkable recovery.”  Stacy is a WARRIOR!! She is the ultimate inspirational character. She is extremely strong willed and has shown great courage and determination under fire. She has, I'm sure, had her share of very rough days but she remains positive and is an example for any person going through a difficult struggle! I am sure that she is a life coach and a mentor to many even if just by her example. Stacy is a rock star to many, including myself! Here is the Web address to Stacy's public Facebook page: https://www.facebook.com/stacyhurt17/ I stand with complete respect and admiration towards the men and women who serve in our nations armed forces. Especially those who have traveled to distant lands to put themselves in harms way. It may seem inappropriate to some to draw a comparison to those who fight a different kind of battle here on the home front. It cannot be denied though that disease is often times the enemy. It does not discriminate based on age, gender, or place of origin. Fighting the battle it creates requires strength, stamina, and courage. I have given you some examples of people that I consider to be of the warrior class of individuals. As for me, I am just happy to be here so that I can share their examples with you. Thanks for taking the time to read my blog. I SO appreciate you for doing so!
~Greg~
6 Comments
 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!  Adam's statue at the veteran's memorial park. 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.  The shoes! 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:  Princess A"Lice Brionne 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!  Me with the the team at Fearless Rock! 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!  None like her, although there are many others! 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.  “Our fingerprints cannot be erased from the lives of those we have touched” 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: Fingerprints 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... Until Then, ~Greg~ By the way. If you want to learn more about Ali and Batten disease, feel free to visit her page: www.alisangels.org |
Author
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.
The Spotlight - 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 ...
https://www.rareblogger.com/blog/forever-royal-the-final-version Batten Family
Titles - 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 - *Austin Smiles *Sweet Montanna and The Status October 2017 - *The Blog About My Blog *Sebastian's Story 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 February 2018- *Jamesy Boy and The Treatment March 2018- *The Priceless Princess From Beyond *Forever Royal - Part One April 2018- *Forever Royal - Part Two June 2018- *That Kind of Love - Conner's Story August 2018- *Lasting Impressions September 2018- *What I See (She is a Butterfly) October 2018- *No Longer Alone - Kristiina's Story November 2018- *Things We've Talked About - Oscar's Story *The Reason Why - Hannah's Story December 2018- *Kayla's Perfect Princess - Breanna's Story January 2019-
*Where Do I Go From Here? - An information only blog February 2019- *Warriors Unaware - Mia and Kaleb April 2019- *Her Little Story May 2019- *Someone Like Raelynn *Forever Royal - The Final Version August 2019- *Awfully Beautiful - The Life of Noah and Laine September 2019- *A Lifetime of Love - Tegen's Destiny December 2019- *Forever Beautiful - Gabi's Story January 2020-
*The Miracle Baby - Amelia's Story March 2020- *Dylan's Life - A Small Town Story May 2020- *Princess Grace and the Challenges June 2020- *Anything for Tessa - Her Story September 2020- *Haley Bug's Battle - A Family Story November 2020- *Journey Unexpected - The Rich Family Sanfilippo Syndrome and other MPS family titles -
July 2020-
*The Beautiful Light of Haidyn Grace August 2020- *Any Distance Traveled - Reagan's Story September 2020- *The Missing Someone - Kiernan's Story Archives - Use title listed above with the applicable month and year.
January 2021
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 Letter to Larry - February 2017 |