“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”
It’s hard to believe that I have been at this for two years now. It has, in fact, been a little longer than that. I started writing back in 2016 in order to share the experience of diving an underwater memorial and also to share about meeting a very special Batten princess. I had also written a little bit about being Benjamin’s Daddy. There was a time when I was asking myself something like “where do I go from here?” I had found that I loved expressing myself and discovered that I was okay at putting words together. I didn't want to quit but I felt that anything that I could write about myself would be boring to most people. Maybe my career, yawn! Sure, rockets and helicopters are cool but I didn’t exactly invent the things. I never have been the best at any one thing that I have done for a living so telling people about all I have achieved would not be possible. I really do not have much in the way of advice that I can offer so blogging about myself wouldn’t be of much help. I do love my life for the most part but telling you about all the things I have achieved, well, It is just not happening.
I was at one point made aware about Batten Disease through a set of circumstances that I consider to be part of my story. Everybody that has been made aware has their own story as to how it happened. For many, it came about simply as a result of searching for things of interest on Facebook. In the end, I suppose the means by which you were made aware doesn’t matter, as long as you were made aware. People need to be made aware because that effects change. Just knowing about these families is important because these children are so very special. What about all of the other kids that suffer from cancer or other rare diseases? Are they not important also? Of course they are! It doesn’t matter what the affliction is. We are talking about children and sometimes young adults. Devotion to those who battle a disease exists no matter what the source of the battle is. Kids are to be adored, no matter what.
So why have a blog that just talks about one disease? You know, it might not be that way if I had more time on my hands. I do think that more attention needs to be drawn to rare diseases in general. At one point I had started to reach out to the pediatric cancer community but then I realized something. There was no way that I could do a good job of being an advocate in that community and at the same time, continue to work on the behalf of Batten families. I just work too many hours. Anything worth doing is worth doing well and I am passionate about this. Children with Batten Disease have a big piece of my heart and there was no way that I was going to stretch myself too thin. I do also feel that you as families in the Batten community represent well all of those who battle other rare diseases. Your stories have much in common with theirs!
Working with the Batten community and being allowed to write these stories is very special to me. It is a privilege to have been given people’s trust and to be involved. The Batten community is a very special group of people. I have used a phrase a few times in my blog now that I like to repeat from time to time. I say that Batten families are made up of ordinary people that have been asked to do something that is extraordinary. To be given that news concerning your child’s diagnosis and the effect it would have on a parent. It is difficult for someone on the outside of the community to understand. You had hopes and dreams for a life that you helped create and then, all a sudden, you are in the midst of a search for answers. Hope for a diagnosis that can be dealt with eventually leads to something that you never would have expected. Something that most often, a parent didn’t know existed. The experience of going through the whole thing is as rare as the disease itself.
This leaves the Batten community a somewhat closed one, and rightfully so. This meaning that only those affected by the disease can truly understand what it is like to experience the things that are dealt with. Once welcomed in, each family gains access to a group of people that are able to understand what they are going through. This, because of going through it, or having gone through it themselves. There are some fantastic people out there that bring comfort and concern as they follow these family’s journeys and that work is so important as well. So why am I bringing all of this up? I am again, just expressing my gratitude towards all of you in the Batten community that have allowed me to write about you. I am also so appreciative of the families that have expressed their gratitude for what I am doing through their very kind words. I will never forget a comment on Facebook that was made by a Batten mom earlier on and it was simply this, “He is writing about us.” My thought when I saw that short comment was something like, “Well, yes I am!” You bet I am! There is a reason why.
I have never tried to claim that we have experienced what a Batten family will go through. We are, however, parents of a special needs adult. We were told by a geneticist that Benjamin’s condition was most likely degenerative when he was a young child (He is now 28 years old). She could never pin down a exact diagnosis and we have never continued to look for one. We knew because of the background in my wife’s biological family that we were predisposed to have a child like our Benjamin. We just never thought about the fact that it might happen. The end result was that we wound up with this most wonderful human being in our house, as well as, all of the responsibility of having him with us. What is my point? We know what it is like to have a child that does not function normally but we do not know what it is like to be told that our child has Batten Disease. I do know what it is like to have an extra strong bond with a child but I do not know the heartache that comes with having received that news. The news that your child has Battens. My sensitivity to my own son lends itself to a sensitivity to kids who battle Batten Disease. Does that make sense to you? There are other people out there that have a sensitivity towards these kids for their own reasons. I am friends with some of the best of them!
In the end of it all, I have this opportunity that I have been presented and I will continue for as long as I can and also, for as long as I am allowed to be involved. I have been rewarded abundantly for what I have done so far. Words really matter and they can be a great way of rewarding someone for something that is appreciated. Just knowing that I can make a difference in the lives of those who battle Battens has been very rewarding to me. Several people have commented about the fact that I have put a lot of time into writing about Batten families. A comment like this would be a true statement as this is where my time away from work is now spent. Some things have been set to the side but when you are involved in a “labor of love”, you gladly set those things aside. I have said in the past that it is because of these dear children that I discovered that I do love to write. I did not find this out until my mid 50s. Would it not be a great reward if I was able to write in my retirement? All because I fell in love with some of the most amazing little people on the planet? All because I took the time to write about them? I have been rewarded almost non-stop since the time that I first started doing this. Even if the only thing that I have gained from this is the kind words of people within the Batten community and those who follow them!
I created a Facebook group page and named it Benjamin’s Daddy - The Batten Blogger. I did this because I wanted to have a special place to connect with Batten families and also to keep people informed about the blog. The group page has a significant amount of members, although it is not as big as some of the pages that were created by Batten families. That is just fine with me. These families deserve all of the attention that their pages get because they are sharing their journey with all of us. I do appreciate the fact that my posts are seen by families within the Batten community as they often leave comments. These are SO appreciated because I feel like I am working on their behalf. Sometimes, I do wonder if my motives for doing what I do are questioned. I really am an honest person. I do not do this for monetary gain. If I was to do so, I would make sure that a very significant amount of the proceeds would go back into the Batten community or to research. I have not seriously considered doing this for profit because what I get from doing these stories is something that money just cannot buy.
Am I trying to gain notoriety and or acceptance by doing this? First of all, this is not anything that I ever planned to do. I have always worked in a production environment in Aerospace and Defense or in private industry. I now work in the aviation field as a mechanic. I never, in a million years, could have planned this. Let me just say this. I am not trying to gain notoriety but it is nice to be known. I am so touched by these stories and I am rewarded by knowing that people see the effort that goes into doing them. The parents need to be acknowledged also because of the effort it takes in providing the material to me. They write the stories through living out the details. There are so many people that are on social media whose time is spent honoring families that battle Batten Disease. I am sure that people that make up Batten families will acknowledge how important these folks are to them. Words are so powerful and I know how much kind words mean to the families. So am I trying to receive an additional level of acceptance by doing what I am doing as a writer? While it is nice to be accepted, that is not the reason that I write. I simply fell in love with these kids and their families as I continued to do these stories.
I sometimes comment out of ignorance or a lack of caution. I would ask that you would forgive me when I do. I know that I need to be responsible when I write and that I need to have my facts straight. This subject is very sensitive in nature and I know that I need to be careful and also very respectful. I hope that I have done this the majority of the time as it is always on my mind to do so. These kids just melt your heart if you allow yourself to be vulnerable to that. I have used words like “sacrifice” and phrases like “undying love” to describe the action of Batten parents and other family members. I wonder if Batten parents ever read these stories with skepticism as they to say to themselves, “we are just regular people. Quit with the drama!” Remember this. These stories are written from an outsiders point of view. That, with the help of those who have, or are, battling Batten Disease. There are different ways to handle the journey. Some just want to live a private life while others want people to know what it is like for them. Some are anxious to have their stories told by me or someone else. Others are like, “No thank you!” For yet others, it is just too difficult to talk about. They also have a piece of my heart!
The number of stories that I have been able to do has decreased as they have become more detailed. The amount is not as important as the quality of the story. You deserve the very best. Hopefully, you can see where my heart is at even though my level of experience is not as great as others. I was trying to do two stories a month in order to keep interest in the blog going. The way that I use this blog is out of the ordinary. Most blogs are shorter with entries made frequently. This one has stories that are equal to, or greater than full length magazine articles. I wouldn’t know how to do things differently at this point. I have thought about using the help of a Batten parent while serving as the editor. This way, I could have entries in between the larger stories. We will see what the future holds. Any idea?
Some people would criticize me for paying attention to the number of people that view the blog. If my only purpose for doing this was to honor the families that battle Batten Disease, that would be enough for me. That, in fact, is my primary reason behind what I do. Spreading awareness was never my first thought but the fact is that having this blog does help to do so. I view the numbers because they are made available to me by Weebly, the host of my blog site. Now there are some stories that see a huge spike in viewership all at once. This is because the family that the story is about is so well connected to the community in which they live. Sometimes, they have a huge presence on social media. Still, there are others whose stories get looked at gradually over a period of time. Either way, all of these families are part of the whole. We are not talking about a New York Times best seller here folks. People do look though and I am so pleased at times by what I see. You are all so special to me and I am honored to be involved in the small way that I am! What I really love to see is when I look at the total number of stories that get viewed in a month. It makes me happy when I see that a story that was written over a year ago is still being looked at. Even if it is only a small amount of views in a month. Page views for the last thirty days has been a little over 2500. Shortly before that it was closer to 3000. It fluctuates and a lot of those views are by people who frequent the blog. I am sure that many of those views are people that stumble upon the blog or who were told about it. The big point is that the blog increases awareness in some part and looking at the numbers provides me with some confirmation of that.
Batten families, I have poured myself into this and you are all always on my mind. I have served in the military and worked at jobs that support our nations defense. The helicopters that I support by working in my company’s overhaul department fight fires. I am a husband and a father of three. I am Benjamin’s Daddy and he is one of the most special guys you are ever going to meet (I am a little biased I suppose). Regardless of the number of people who know who I am, I do feel that I have never done anything as important as telling these stories. I still cannot wrap my head around it. What is it like to be a young adult whose big desire is to raise a family. All of a sudden, you are asked to travel down a road that you never knew existed. You all amaze me! Your level of devotion is truly inspirational.
My big intent for the blog is to just keep going with it for as long as it is practical for everyone involved. If I were never to write about another Batten child, I would consider this to have been the best thing that I have ever done. The fact is that there will be more on the way. More people have shown interest and the desire for me to continue is still there as well. This blog is my baby and my passion. Anybody that knows me is aware of that. These stories belong to the families they are written about as much as they belong to me. These stories are about your babies and I guard them in such a manner!
Some what of a funny story is how the content of the blog was developed. I chose Weebly’s free version as my host, originally to get started. You could find the stories if I first shared the link and that was good. Then, I found that I could have my own website domain and it really wasn’t that much in cost. That was the birth of gregster60.com. I was off and running so to speak. I was doing shorter stories at that time and incorporating beautiful pictures of these kids and their families. This, of course, helped to tell the story in a bigger way. I then remember that I was in the middle of posting a story and adding photos as I went. All of a sudden, I wasn’t able to add anymore pictures. I was outraged and then realized that I was going to have to “Upgrade” my package with Weebly. I was like, “You’ve got to be kidding me!” Well, the amount of money increased but they had me at that point. The yearly cost is certainly affordable. This in order to be able to do something that is my passion. Trust me, I spend a lot more on other things (I would spend more in a single weekend when I was still diving). What an amazing experience this has been for me. Maybe I shouldn’t be telling you that part but I am leading up to something and here it is.
Even if this were to come to an end for some reason, I would pay the small amount required to keep these stories in tact by keeping the domain on the worldwide web. I would do a story about Batten Disease itself and then invite people to look into the table of contents and to read about these kids and young adults. They are just the most beautiful of all human beings! Batten Disease really isn’t that rare. Is it? The definition of what makes a disease rare varies from one country to the next. In Europe a disease is defined as being rare when it involves fewer than 1 in every 2,000 people. Here in the USA a disease is considered to be rare when it involves fewer than 200,000 people. Really? As I continue to write, the number of places and countries where families reside continues to increase. Turkey, Greece, Scotland, the UK, South Africa, and so many different places here in America. Every story is unique even though some of the circumstances are shared across the globe. I have grown in my ability as I have continued to write. I can’t claim to be the best advocate that there ever was because I never will be that. That means that there is endless room for improvement.
The stories have gotten longer but many of the details have always been sweet. No matter what. At least they have been to me! Thank you so very much for putting up with me. Hopefully, I have done some good by what I am doing. I hope that 2019 is the most amazing year yet. Not just because of this blog, but more so because of progress towards a cure for all of the variants of Batten Disease. There is more work to be done and I will stay on it!
Dear families, I want to thank you for the opportuniy that I have been given by you to grow as a person. I have recieved a lot of compliments on my work by many of you. I was even called “The Famous Batten Blogger” and “Our Batten Blogger” by a couple of awesome Batten moms. I have been told that I am amazing several times but really, you are all the amazing ones. You write these stories as you care for these very special little warriors who are so deserving of that care. I only take what I am given by you and I put into print using as much care as I possibly can. This is always a team effort and I am humbled by the fact that I am allowed to take part. I am looking forward to being involved as long as I am allowed to be and for as long as I am able to be. There is more on the way and I am looking forward to it. Thank you once again and by the way, Happy New Year!!
Blogger and Advocate
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...