“I would never look at things in the same way ever again. I had been made aware and I had met the one who was responsible for that taking place. She was beautiful and I would soon mourn along with all of those who followed her. This, as she passed into eternity just three months later. Why Batten Disease and these families? Why do I continue to hold them in such high regard, and why do I pay so much attention to this one childhood disease? My perspective in life had changed once I was made aware, and these precious Batten warriors have become much of my focus.”
Taken from the blog titled “Lasting Impressions”
I know that everybody can look back in their lives and see how a chain of events has taken place and often times has brought about positive change. Sometimes those events can also be negative occurrences. Either way, we are changed in one way or the other. Why this blog and my love for writing got started comes from a series of events that have been overall, very positive for me. Do you like details? I can remember one time being in my boss’ office trying to explain something. You see I have problems getting straight to the point. As I was talking to him he was motioning to me with his hands. You know, like what people do when they want to get one with it. He was being kind of rude, wasn’t he? Well it has taken me a while, but I have figured out that I use a lot of words because I like details and giving people context. So here we go!
We were at a mall one weekend and we were walking by a bookstore. I noticed a book titled SEAL of God that was written by a former Navy SEAL named Chad Williams. I was thinking that the book sounded interesting and I have a lot of respect for Navy SEALs as I am a former Navy guy. I bought it and brought it home. I devoured the book in a weekend and it left me wanting more. A little later we were at our local superstore and I noticed that Marcus Luttrell’s book called Lone Survivor was for sale. This looked interesting as well, so I brought that one home. I read it non-stop as time allowed. What an incredible story! I was definitely hooked on these stories about our military’s Special Operations community at that point. What amazing people they are. I needed more! Later, we were at Benjamin’s favorite mall and in his favorite bookstore on a Sunday and I went to the section that had military books. I scanned the shelf and and saw several books that interested me. One of the books was named FEARLESS. It was about a Navy SEAL that was killed in action in Afghanistan. His name is Adam Brown and he is from Hot Springs, Arkansas here in the USA. It seemed that he had to overcome a lot of problems to even get into the SEALs. Well at the time, I thought that I really wanted to read a book about someone who had returned from battle victoriously. And I really didn’t want to read about someone else’s problems. So I put FEARLESS back on the shelf. It is possible that I may have never picked it up ever again. I may have never read Adam’s story!
My reading continued and it got to the point that I thought that I should purchase a Kindle to keep the cost down, wink wink! Actually, I just wanted one and so I put it on order. I read a couple of other books and thought that I would give FEARLESS a try at that time. I loaded the book on my Kindle and began to read. From the very first few sentences I was gripped by this book. I could not believe what I was reading. How could someone overcome so much and achieve what he did in the military. It is still to this day, the most incredible life story that I have ever read about. Upon finishing the book I sat at my computer wondering how I could go about getting ahold of his family to thank them for telling his story. I would get my chance to do just that.
Now I am a pretty passionate person. What do I mean by that? By that I mean that I have to be passionate about something in order to get moving on it. Otherwise, it ain’t happening. Once the passion is ignited I become almost obsessed with it! Um, actually, I do get obsessed with it. I am also given to extremes sometimes. I go overboard! I give it everything I have! As a result, I would end up traveling to Hot Springs in order to honor this Navy SEAL who gave his life in the name of freedom. I went twice. The first time was with Benjamin and Rosie. I took diving lessons in order to see an underwater memorial dedicated to Adam. The memorial is fittingly named Fearless Rock. On the second trip I had the honor of meeting Adam’s family. If you look in the April and May archives for 2016, I have written in detail about the entire experience.
In this case, there is a little more to the story. It was through a chain of Facebook pages leading from this Navy SEAL that led me to a little girl that had a horrific disease. It is fatal and there is no cure for it. It is called Batten Disease. This little girl’s name is Ali (sounds like alley) and she was from Hot Springs as well. Many of you know the story. It was on the first visit to Hot Springs that we met Ali and her family. The entire experience of following her journey changed me forever. The details related to meeting this angel are contained in the blogs in the February of 2017 archives. Up to that point all my activities on Facebook had been completely random and sometimes politically angry. After having become aware of Batten Disease, my dealings with social media changed completely. Through a series of circumstances I eventually branched out and started following other Batten families. My blogging, which had began with one blog about my son and then the whole FEARLESS experience, now became focused on these families.
What is it about the the journey that comes from having a child with Battens that I find so moving? You know what? I am probably one of the most emotional guys that you are ever going to meet. I see nothing wrong with being a sensitive soul. I work in the aviation field in order to feed my family. There are lots of alpha type males around in my world but I am a little different. I can be aggressive and competitive when I need to be but I have no issues with being sensitive in nature. In my mind, it is the sensitive and passionate types that get things done FOR OTHERS. It is for the “others” that this blog has come to exist. It was started to detail my own experiences, but it has become so much more. So again, what is it about the Batten Journey. In my last blog I wrote the following:
“I mean, what is it like to be told that your child has a disease that is fatal and for which there is no cure, no treatment? The way that you all care for your kids through all the stages that can be so devastating. Yes, in some cases, there is room for optimism but change is too slow in coming. Upon being given the news of the diagnoses you are completely devastated. You then pick yourselves up and begin to provide your child the best possible care. You provide them with everything that is needed to make their lives as normal as possible and you make sure that they experience everything that makes life worth living. You are there with them, every step along the way. Undying love is demonstrated through your actions. Throughout the journey, and as the difficulty increases, you take whatever action is necessary. The respect and admiration that I have for you grows with each story that I am allowed to tell. I get drawn into the details and I do the best that I can to feel what you feel.” And in fact, the love and respect that I have for those who make up the Batten community has grown exponentially.
Is this to say that families that have a Batten child are the only ones that have to endure a difficult journey? No, not at all. However, they are a really good example of the type that shows undying and sacrificial love to their children. All of you that are going through this kind of thing are not trying to achieve the rockstar status that I tend to give you. You just wanted a family. I can’t help but to put you on a bit of a pedestal. I am the parent of a special needs child who is now an adult. I understand some of what you have been through but I cannot know in detail all that you have or will experience. Only you, as a community, can understand completely. As for me, I will use this opportunity to honor you for all that you go through. Most importantly, I am doing this to spread awareness and to honor these children. More than anything, these blogs belong to them. I want people to know who these precious children and young adults are. Will I always blog only about Batten Families? Time will tell. I will always have a special appreciation and love for the Batten community. I swear that I love these kids! I will always be willing and ready to make additions to the list of families whose stories are told in this blog. Do you know that I have actually been told by more than one person that I should write a book. What a great compliment that is to me. How would you feel as Batten families if I was to do so? I have had guys at work tell me that I should put ads up in the blog in order to make money. You know, I would never want to use the difficult circumstances of others to turn a profit. What if the proceeds went to research and the support of families though? Something to think about. Your opinion is important to me!
The domain name for the blog was originally gregster60.com. Why the name gregster60? Wow, couldn’t I have come up with something better than that? I am not really cool enough to be calling myself the Gregster. I am just a regular guy with a regular job. I was born in 1960 and thus the name. How clever huh? Not really. I actually wanted to call it BenjaminsDaddy Dot Com. I asked a couple of people and they thought that was perhaps too long of a domain name. I thought to myself, well what am I going to call this thing. I can be creative at times but this wasn’t one of them. I ran the gregster60 thing past my wife and she liked it. I went with it and so there we were. Since that time, I decided to change the domain name. This, in order to better reflect the purpose for it's existence. And so, www.rareblogger.com is the name I chose and that is where you can now find these stories. Not a single one was lost in the shuffle! I do like like the new domain name. Don't you? It is a pretty rare type of blog. Is it not?
Being Benjamin's Daddy is a status to me. He is a special guy and it is special to be his dad! I have always loved him but my love for him has been enhanced by my activities on Facebook and my blogging about all these special families. I am known as being Benjamin’s Daddy even if the blog is not named after him. There are a lot of families that follow Batten children that also appreciate my posts about my son. He is such a handsome guy in his own right. He gets his looks from his mom. I call them “My Two Faces” because they look so much alike. I never try to say that being a parent to a special needs child is like having a son or daughter with Batten Disease. I only try to relate our experience to theirs in the ways that I can. The trials of a Batten family will always be so much more difficult. I do have two other sons that I am equally proud of. Daniel and Kenny both live out of state and both are successful in their own way! Love you guys!
My sweet wife, Rosemarie has been very supportive of me. She has read every single blog post and she helps me with grammar and spelling. As I am writing each story, I bounce ideas off of her about the blog. I will read her sections as I write to see what she thinks. My mind is always moving when it comes to writing this blog. Anytime that I am performing mundane and repetitive tasks at work, or I am at break or lunch, the old brain is thinking about the details of a story. When I get home at night, I don’t talk to her about what I worked on. How boring is that. I talk to her about what my thoughts are on the blog. I bounce ideas off of her to see what she thinks. We are a team. There are others whose opinions I will seek. Rosemarie, though, is my main confidant and help in writing. I am so thankful for her and the years that we have been together. She is better than I deserve sometimes.
Where would my blog be without Facebook? Everytime I do a new post, Weebly gives you the option to share on Facebook and Twitter. I have yet to get a Twitter account but I share the blogs on Facebook routinely. That is, after all, how I connect with Batten families. For that matter, that is how they most often connect with one another. Like most all of the others that follow Batten families, I try to give encouragement to them through comments on their posts. I have grown to love Batten families and it should not be any wonder. After all, that is what I have started to write about the most. I do my best to meet as many families as I can and to communicate my feelings towards them. I love the little warriors who battle Batten Disease. They inspire me to write. It is because of them that I have discovered that I do love to write. I have for the most part, quit hitting the like button on pictures of kids with Batten Disease. I now almost always hit the love heart button. I can’t help it. It is just the way I feel and if I do it for one child why shouldn’t I do it for the others. I hope that you don’t mind! You know what else? I have grown to love a lot of people through my involvement. Now, would we all get along perfectly if we lived close by? I would hope so but maybe not. The thing I like is that I have a group of people on social media that appreciate my son and they love the work that I do on their behalf. I have received a lot of support from the Batten community at this point and it is so appreciated! I really mean that!
As I said earlier, there came a time when I felt that branching out and meeting more Batten families was a good idea. I am so glad that I did! This has all literally changed my life for the better. I am unafraid when it comes to doing these stories. It is hard to put into words but being known as a friend of the Batten community is a big deal to me. I have heard people make comments like, “He is writing about us", and you know what? I am writing about families that battle Battens. I am not doing this to make a profit. Like I said earlier, if I ever was to gain monetarily from this, it would only be right to put it back into the community. This takes a lot of my free time away but it is better than sitting in front of the television all the time. I do it for the love of writing and for the love of the Batten community. It is my way of giving back. Following these families has enriched my life.
When it comes to the blog and the direction that it has taken, I owe much to our friend Sandy Lee Garrett. She is the one that told me that I should reach out to and blog about these families. My friendship on Facebook with many of the key families in this blog at the beginning came from me learning of them from Sandy. For example, I would have never learned about Ollie’s Army except through Sandy. I would not know who Dixie Bergeron and her handsome warrior son Jacoby are. I would not know about Elsie Clark and her grandson Marshall (NO Ordinary Love would never have been written)! Sandy first got her start following little Casen from Casen’s Crusade. Read the blog titled “The Caring Type”. Sandy lives in New Zealand and she traveled from halfway around the world to meet Casen. It is a beautiful story, as is Casen’s life! People often come into our lives for a reason. Sandy had a big part in giving me direction early on and things have just taken off from there. I will always be grateful to her for her contribution!
So as I have said, I have a love for writing and I hope that it shows. The feedback on this blog has been overall very positive. The stories have changed as my ability to tell them has matured. I was extremely happy with the way that my last blog came out. I couldn’t have done it without the help of Montanna’s mom Jennifer and her grandmother Joan Avery. I was chatting with Joan after the blog was complete and the day was done. I told her that I was very happy with the way that it came out and with the number of people that looked at it. She said that I had done a good job for their girl and then she just said “I hate Batten Disease”. Upon seeing that in my chat window I just got this sinking feeling as her words brought it all home. I mean I love honoring these kids and you families in this way but we are talking about a terminal illness. I need to always make sure that my motives for doing what I do are correct and for the benefits of others. It's not about me!
When I first started writing these blogs, I would take notes during the week and then pound out a story in a day or two. Things have changed. I now take at least a two week minimum to write each story. The amount of detail has increased. I used to assume some things and kind of “wing it”, if you will. Now what I do is ask the family for a summary of their experience. A timeline of their child’s life. Then I ask questions that help me get details and emotions that I do not yet have. It is always done over messenger or email in most cases. When they are thoroughly tired of hearing from me, then I have what I need. So as you look at the stories in the blog, I think you will see the changes from one story to the next. They are all precious because they are about these darling children. It is just that the later ones have more detail. They all carry deep emotions. I have a personal test. If it gets my emotions stirred up then I know that will be the case for my readers. Trust me, they all have passed the test. I can’t tell you the number of times that I will be off in thought land and will start to think about the latest blog. Often times my eyes will start to tear up in the shop and I will have to regain my composure before I am found out.
As I have already stated, being involved in the Batten community and having a way to contribute is important to me. That is really the core of why I am doing this. Although I am not just doing this to be well thought of, I do like knowing that my efforts are appreciated by the families. There are no Batten families that are less significant to me but there are some families that I have had a greater amount of contact with. Sometimes, it is something simple like responding to a post that I have done with a warm thank you! Sometimes it may come in the form of a larger comment about a blog from the family that I did the story about. The number of stories that I have done has increased to the point that I can’t mention all of them in this particular blog post. Each story is precious to me. I have the upmost respect for any of the families that takes a journey like Batten Disease. There are a few people that I would like to mention at this time.
Mike Carroll and Lucy Faith to me are an amazing couple. I take it that both are college educated and together they had a definite plan as they started a family. I did a blog called My Kind of Royalty in which I talked about them. In that blog I compared this couple to the ones that had been showcased by the Royal Family. You see Mike and Lucy live in England. I made it a point to tell people that these other couples had nothing on Mike and Lucy appearance wise and I truly believe that. When two nice looking people have a family they generally produce nice looking children and you know what? They have. All three of their boys are quite handsome, and little Amelia? Well she almost takes your breath away. Their dreams would begin to become reality as they worked on building their family and life together. As would happen though, their darling little 3rd born son Ollie would be diagnosed with CLN2, Batten Disease. This alone would leave any family devastated, but that would not be all that they would face. Right around little Amelia’s 2nd Birthday she would also be diagnosed as having the same disease. Crushed and in disbelief, it would be so easy for any family faced with this type of thing to just bury their head in the hands and say “Why us” Instead, what did they do? They created an army. Through Ollie’s Army they raise awareness while keeping us informed about the progress of Ollie and Amelia as they undergo Enzyme Replacement Therapy for CLN2. There is no doubt that they are extremely busy people. They are heavily involved in fundraising and also help others in the Batten community in any way that they can. That is the way they chose to deal with the devastating circumstances that they found themselves in. They have met with Rockstars and Royalty and yet they remain totally accessible and easy going. Yep! They are my kind of Royalty! I cannot begin to tell you the amount of respect and admiration that I have for this family! I am so happy to be following them from a distance while watching all that they do for the Batten community in England and beyond.
Christina Bouraimi, from the country of Greece, is one of my most amazing friends and co-advocates. I am sure that most, if not all of you know that her son Theodore has CLN3, or Juvenile Batten Disease. She had posted a picture of her and Theodore standing face to face. The picture was meant to show us a portrait of the love that exists between the two of them. Well her message came through loud and clear to me. I was immediately inspired to blog about them and so I contacted her. We did not really know each other that well at the time. When I received the material for the blog from Christina, I couldn’t believe how skilled she was at telling her story in a poetic form. I was thinking to myself that there was no way that I could re-write or take credit for what she had sent me. So what I did was to check the grammar and place that portion right in the middle of the blog. I used her information to write the beginning and the end of the blog and it turned out well, to both of our satisfaction. I actually wrote the intro to the blog on my cell phone while getting my tires worked on at the tire shop lol. These blogs, for the most part, are seen only as much as they are shared. Christina is a tremendous advocate for her son and also for all kids with Batten Disease. She is very active on social media and in cyberland in general. She has literally shared the Face to Face blog with thousands of people worldwide and it has even been translated into another language. I can remember doing a Google search for gregster60.com and had Christina’s name come up. You know what? I am okay with that! It is so nice to know you and your wonderful family Christina! I SO appreciate all the support that you are to me.
I wouldn’t know who Elsie Clark and her grandson Marshall are if it were not for my friend Sandy. I am so glad that she told me about you Elsie. No Ordinary Love is the blog that I did about Elsie’s love for her grandson and it is maybe the most beautiful story of them all. Elsie said that she is “just an ordinary Nana” but I wasn’t having any of that! Trained as a nurse in the type of medicine that was needed for a Batten child’s journey, Elsie would drop everything for her most handsome guy who was more like a son to her. The story also includes the fact that Marshall’s mum Lara Clark gave up the care of Marshall to her own mother Elsie. That in itself is beautiful. It is not that Lara wasn’t there, it is just that she did what was best for Marshall. Elsie left her profession as a nurse and fought for Marshall as they weaved their way together through a medical system that was not designed to handle his care. Elsie clung to Marshall in the most loving and profound way. The whole thing often brings tears to my eyes when I think about it. That story is in the April archives for 2017. Another person that was very special to Marshall, but who was not included in the story, is his Uncle Andrew. Andrew did something special for Elsie when he had the blog about Marshall turned into a book for her. To Elsie, it is a tremendous keepsake and that is special to me. The love that exists between the two of them is a tremendous example of what takes place between a Batten child and their caregivers. These kids have a power over us and that is why I blog about them. Elsie and Marshall are both angels. One is in heaven and one is still here on earth. And Elsie, you will never be an ordinary Nana!
One lady whose story is not yet in this blog is Shannon Mason. She does not have a child with Batten Disease. Shannon’s son, Vince, contracted Herpes Encephalitis of the brain when he was only two years old. He will be 16 years old this month! Shannon shared with me that her son was not supposed to make it this far but he continues to battle on! He is such a warrior! How do I know Shannon? You know at one point I had just sent her a friend’s request on Facebook because her name came up. I did not know it at the time but she was close friends with one of the Batten moms, whose name is Wendy Weaver. Wendy is an awesome person with this son named Austin. Austin has Batten Disease but that hasn’t kept him from smiling. Austin smiles. In fact, that is the title of Austin and Wendy’s story that I did in September. Austin Smiles is what I called it. Another very wonderful story. Shannon had read one of my blogs a while back and made a comment about it. This is what she said, “All we can do is to show these kids our undying love.” You have to know that a comment like this will never go unnoticed by me. In fact I have used the words “undying love” several times now in this blog and it will continue to be used over and over again. Shannon is a beautiful example of someone who shows undying love to her child, as is her friend Wendy. Both of you ladies are amazing to me! Thank you so much for your examples.
Kadriye Hacioglu is my friend. She lives in the country of Turkey and she is someone that I greatly respect. Kadriye has been a constant source of encouragement and is a real cheerleader to me. She has not dealt with Batten Disease only once, but twice with both of her beautiful daughters. One is in heaven and the other is still here on earth. In fact Cemrenur, her elder daughter, is the oldest living child with her particular variant of Batten Disease. In her early 20s now, Cemrenur is a warrior princess of the rarest kind. She continues to battle on with the assistance of a machine that helps her to breath. Together her and her mom are a tremendous picture of tender, undying love. Cemrenur is Kadriye’s world and together with the help of Kadriye’s mother they provide constant around the clock care. Why? Because Cemrenur is so deserving of every bit of attention that she receives. She is beautiful! It wasn’t that long ago that I did a post on Facebook telling people about my desire to blog about them and their children. I received a very good response from it and that was so appreciated. I had often wanted to have Kadriye’s story in the blog but I was afraid to approach her because of the language barrier. I didn’t want to call anyone a bad word and end up offending them. Well Kadriye messaged me when she read that post and told me that I could do her story. It was kind of cute because it was like she was waving to me and saying “Hey Greg, I’m over here! Please tell my story!” It went very well and together we got it done. It is called A Rare Kind of Devotion. My friend from work, Jeff, told me about Google Translate. What an awesome thing that has turned out to be. I used it for Kadriye’s blog and more. I have used it to translate other blogs so that they also could be shared by Kadriye. I have used it to communicate in French and Polish as well. Pretty cool stuff for a regular guy like me. So Kadriye is a special friend and one that is highly valued by me and so many others. She is a constant source of encouragement and I am so happy to have her on board.
There are so many others that I would like to mention but don’t have the space for in this blog entry. I had recently sent a friend’s request to a young mother named Brittany Gaudet who is from Newfoundland. She has recently lost her beautiful five year old daughter Ava to Batten Disease. I had previously done a story that I titled Little John and The Reason. In most all cases, parents with kids that start to show symptoms of the disease go on an endless search for answers. When Little John started to show the symptoms his mom, Natalie, automatically thought to have him checked for Battens. She did so because there were other kids in the family that had the disease at one time or another. I was looking at Brittany’s page one day and noticed that she lived in the same place as Little John’s mother, Natalie. I came to find out that little Ava is actually John’s cousin. I guess the thing that is significant in telling you this is that Ava is part of little John’s story and I didn’t even know that at the time that I had written it. We need a cure to Batten Disease.
There are so many other names that are in this blog that I haven’t mentioned. I would encourage all that are interested to read through as time allows. There are none that are less important to me. All these stories are precious and priceless.
Not all families will say yes when approached by me. The reasons can be various but will always be understood. Some people want things kept private. Some want their story told by a different means. Whatever the reason I honor the right of Batten families to do what they feel is best for themselves. I always say that I am doing this for all of you. It is not for my own benefit although I am benefitting from being involved. I am not doing this for notoriety although I like the fact that my efforts are being noticed by others. I also would like you to know that I always just work with the material that I am provided. I do my best to not interject my own beliefs and opinions. My desire is just to tell the story while providing background, and sometimes it’s my own. I know from talking to some of the families that people are starting to notice and that they know about this blog.
There is another thing that I would like to tell you before closing. It will always be my goal to keep all negative details out of these stories. I have used words like honor and appreciate more than once in this blog post because those words are both key to what my purpose is in life. When it comes to things like divorce and problems in a family, I try to avoid those details as much as possible. I use phrases like “life happens” because things happen. We all, including myself, have skeletons in our closet. I don’t want you looking at mine and I will do my best to not mention yours. LIFE HAPPENS. Where it is necessary to mention details like a divorce, I do it just like I said. Life happens…
In a couple of cases it may have sounded as though a parent was absent when in fact that was not the case. This is because the grandparent was the primary caregiver at that point in the Batten child’s life and they had furnished me with the information. It is never my purpose to offend anyone.
My feelings are genuine. I really do care. My purpose for writing these stories is for spreading awareness through my new found love for writing. I also want to use my writing to honor all of you and to let you know that neither you, nor your children, will ever be forgotten by me. This blog is not meant to be a glorified obituary. Many whose stories I will write continue to fight. There is hope in the air as you continue to battle. In the cases where your son or daughter has gained their wings, the blog is meant to be a celebration of their little lives. By the time they have left this planet, they will have impacted people’s lives like none other and that same impact will continue to be felt. Unless my life changes and I am no longer able, I want to continue this effort. Will you allow me to do so? I hope so! Moving forward, I will do my best to identify those who would like to have their stories in gregster60. But if I am for some reason not identifying who you are, do what my friend Kadriye did. Wave and say, HEY Greg, I’m over here!
Thanks for listening. You have NO idea how important you are to me!
Blogger and Advocate
PostScript - So here it is April of 2019 and I decided to make a few more changes to "The Blog About My Blog". More than an entire year has gone by and many stories have been added to the blog. I am thankful for every family that has participated and I am forever grateful for being allowed to be involved in the Batten community. These are ordinary people that have been asked to do something that is extraordinary. In the promise, they have become completely amazing to those of us that are on the outside looking in. Writing these stories is a challenge for me in several ways but it has been well worth the effort. My life has been changed by the entire experience and the love that I have for the little warriors that battle Batten Disease has grown exponentially. I will always be indebted to the people that helped get this whole thing started and for that reason, they will always be dear to me. I have a feeling that I am not finished yet and I will continue to write for as long as I am able. I am not finished! Thanks again for your interest in that which has become so important to me!
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Highlighting a previous blog that might interest you:
Journey Unexpected - The Rich Family
One child in a family with a rare disease is a challenge. What if there is two? Heartbreak multiplied you pick up the pieces and will yourself to do your very best. A love that is profound and a bond that is stronger than any other is formed. Two little beauties in one family is two, too many but you seek to make a difference! A journey unexpected...