Where am I? What kind of a title is that? Well you see, I am in between blogs about Batten warriors right now. There will be more on the way if everything goes well and do I expect it to.
The last two blogs were quite a bit of work. Lucy Faith did a fantastic job of providing me information and I thought that everything went well. The more information that I am given, the more detailed the story will be and I was given her family’s complete information. Wow, what they have been through just to bring four children into the world. That, even before Battens came into play. The families in the UK that have children with CLN2 Batten Disease are dealing with so much right now. The threat of having treatment for their children removed must be devastating. To have that hanging over them is a huge challenge in addition to the one they already face. My thinking when I approached Lucy was that they, as a family, are now so well known. Perhaps it would be of no use to her and Mike to work on a blog with me. I was, however, pleasantly surprised at her response and I was extremely happy with the way that it turned out. It was a lot of work but well worth it.
I first started this blog in order to share the experience of being a parent to a special needs person. It also was for the purpose of sharing some of the things that I had experienced as a result of reading a particular book named FEARLESS. I have shared in the past that it was because reading this book about a Navy SEAL that I eventually became aware of Batten Disease. How is that possible? Well, you can read The Blog About My Blog, and that would fill you in. It’s right here on the home page. Just scroll down and you will find the link. I had heard the term blog before I started blogging, but at that point I didn’t really know what one was. I think that most blogs have daily or weekly entries but this one is different. Most blogs have information that people may find useful for living life or perhaps they exist to share thoughts or opinions. This one is different. The original content shared my experiences about my following the legacy of a Navy SEAL. It also talked about how I traveled to see his hometown and also to meet the little girl who first made me aware. There was a time when I was wondering what or who I would write about next. It would be a bore to most people if I was to write about myself. The question of what to write about next didn’t last long. Through a series of events, I started reaching out to families who had children with Batten Disease. Since that time, I have never been without a family to blog about. This blog is different because it tells the stories of families that go through the Batten journey. It does so from an outsider’s perspective with the help of the families themselves.
You may ask why am I doing this. What motivates me? This blog has become my life’s work outside of my normal job. I put an awful lot of time into it. If I am not writing, then I am doing something else in preparation to do so. It has been an amazing experience for me. The stories started out being somewhat simple. I have learned a lot along the way about gathering information and how to process large amounts of information. I have brought my son Benjamin into the discussion several times and have talked about the special bond that exists between us. I have talked about what it would be like if we no longer had him. A large void would appear in our lives if he were to be missing all of a sudden. We have no idea when that will take place or if it will happen in our lifetime. For the Batten family, things are different. For them, there is, in a big sense, a course of travel that is unavoidable. The actions that I see on the part of the parents are to me unparalleled in terms of their devotion to their child. Undying love is still a phrase that fits so well with the Batten community.
A young and single mother uproots herself. She moves away from her family in order to help her daughter receive a form of treatment not available in her area. This, knowing that it will only extend her daughter’s life in the hopes that a cure can be found. A cure for a terminal disease that she, up until recently, didn’t know existed. She is helping her little girl to battle the disease and the results are wonderful. During a chat about the whole experience, she tells me that anyone would do what she has done. You can’t tell me something like that and expect me to believe it. This same mom told me that she “loves her daughter so much that it hurts” (I am not done using this statement). That is the kind of thing that causes my emotions to get stirred up. I think about these things in the most inconvenient places. At work, while I am with my co-workers, driving down the highway, or while I am getting ready to pull up to full service gas pumps. As a parent to a special needs person, I can tell you that the level of devotion, and often, the sacrifices that I see in these families are well worth my time in writing. In fact, I need to do this!
Batten parents will sometimes maintain their own blogs concerning the things that they and their child are going through. I highly recommend that you patronize their blogs if you want first hand information. I hope that you will read both mine and theirs though. The things that I write are a combination of information given to me by the parents themselves and my own observations and feelings. There are some things that I can relate to directly and there are other things for which I can only try to show maximum empathy. The empathy that I have is not something that is forced but rather, something that I desire to possess. Let me tell you something. I do possess it. I am stating the truth when I tell you that I love these kids. I hope that you don’t mind. The same is true when it comes to their families. It is just the way I roll. I have my base of supporters of course. I have had several people express to me their appreciation for helping to spread awareness about Batten Disease. I so appreciate everyone’s kind words. I do like the fact that I have carved my own niche for spreading awareness but that was never my intent. My main reason for doing this has simply been to honor people within the Batten community because I have been so touched by their stories.
I get a variety of responses when I tell people about the blog. I think that most people are not able to place themselves in my shoes. This is so different than what the average person commits their freetime to. Sometimes, I will be talking to someone, explaining what I write about, and they will have this reflective look on their face. It is like they are trying to process what they have just been told. It is a little different but my heart is really in this. I look at life a lot differently than I used to. My life isn’t so much about self indulgence anymore. Don’t get me wrong, I can certainly be that way at times. It is true, however, that my short and long term goals are different. I now have an additional purpose or calling, if you will, in my life. I have had it suggested a couple of times that I should take up writing about wounded warriors. That would not be out of the realm of possibilities for me. I could contact the Veterans Administration or a veterans group and volunteer my time in working with warriors of a bigger variety. You know what though? I wouldn’t want to quit doing what I am doing currently. I would only want to add to it.
I have a really good friend who a lot of people know as Christy Gerrell Bac. She is the mom to a beautiful young girl named Amy. Amy is battling CLN8, Batten Disease. Christy’s husband is a different kind of warrior. Retired from the Air Force, it was discovered that Chad had cancer in his colon. Chad is battling hard and many people are praying for him in this most difficult battle. Can you imagine what it is like for Christy? How does she handle having two thirds of her small family sick like this? I don’t have a complete answer but she tells me how she handles it, in part. Simply put, she pours herself into writing and she writes extremely well. I cannot believe the level of talent that she possesses although I know that people like her exist in other places. Christy really deserves to have her books go through a publisher. Her ability to create characters and to carry them through in length just amazes me. In fact, I was perhaps a little bit jealous of her God-given talent. Then I thought to myself, It’s not that I don’t have an ability to write. It’s just that I am more of a journalist than I am a writer. Christy is one type of writer and I am another. If I had her level of talent, I swear that I would no longer be turning wrenches. What I do though, does have its place. My place now, and until there is a cure, is with these families for as long as they will allow me. By the way, Christy is self published on Amazon. You have to read her books on a Kindle, which I happen to have. I have been reading one book of hers after another. Just keep in mind that they are not for kids.
As I have already stated, I have a passion for telling these stories. I do so while pouring as much feeling into them as I can while also maintaining accuracy. I don’t know this for a fact, but it seems like the number of people that look at the blog on a regular bases is declining. This is not a big factor in my motivation to continue. I can see that people are reading the stories as they appear in the blog and that is good enough. It is nice though when I see that a lot of people are reading the various stories in between the times that new ones come out. That means greater awareness. I do see evidence of that at times! I can imagine that my detractors will think that it is useless to continue to read these stories. They may be thinking that, well here we go again. Just another story about a kid with Batten Disease. It is my belief that each one of these stories is unique and each one of these families stories are worth reading about. Whether we are talking about a well known family that has a lot of support in their local community or a single mom that is struggling to make ends meet. They all have to deal with this dreadful disease. The pure devotion and undying love exists in both sets of circumstances. Batten disease has no prejudice although certain variants may be more prevalent in certain places. Different stories, different circumstances, but the same pure devotion with varying but touching details. Let me also add this. You can put into the place of these families those who are dealing with different forms of pediatric cancers and other rare and fatal diseases. Pure undying love and devotion exists in many other cases.
So I have received an overall positive response from the Batten community when it comes to these stories. I also know that there will be those that are skeptical of what I am doing. I suppose it is true that, for whatever reason, the blog is not for everyone. Like I said earlier, some parents have their own blog. That’s wonderful. Others, just want to share their journeys on their own. Some just want to keep everything in private. You are certainly within your right to not participate. Please know though that everyone has a story to tell. Everyone that is dealing with Battens or has dealt with it had plans for their family. Those plans have been interrupted and their lives have been changed. If you don’t mind, I would like to tell your story. The heartache that is mixed with tender details. I have had the privilege of blogging about a lot of families now. This is so appreciated. There are some that I have talked to and some that I would like to approach. Some have said no thanks and that is certainly okay. I have not gotten back to a couple of families that I have previously talked to. I am so sorry about that. PLEASE! If you would like to be included, let me know. Don’t be afraid to ask. Also, Just because I send you a friend’s request it doesn’t mean that I am doing so just to get a future story. I follow the journeys of these children just to be a support to others. If an opportunity to write about that journey becomes available, then great! Again, if I ask and you are not interested, just say no thank you. Honesty is always the best policy. There are always those who say yes. If you change your mind after doing so, just tell me and there will be no hard feelings. The journey is a difficult one and all of you come first. Do you have some junk in your trunk that you don't want shared? Well, don’t we all? I just want you to know that I always keep things positive. I always say that “Life Happens” and the stories revolve around these little warriors. Plain and simple. I realize that it is sometimes difficult to share an experience that is so disheartening. I completely understand. Your kids and their stories are so sweet though. Please give it some thought.
Okay, so here we go, gulp! The next subject is putting ads that would generate a profit into the blog. Let me start by emphasizing something. This blog has never been about making money and it has never been my plan to do so. We are talking about the lives of innocent children and young adults and I never wanted to use that to increase my income. I have never contemplated putting ads into the blog just because of the way that things might appear to people if I did that. The reason I bring it up is because I would like to know what people in the Batten community think about this. It does cost money to maintain this blog but it is a cost that I gladly assume because I love what I do. The reason why I think about the ads is because of what could be done with the money. The people that know me best, know that I love to give to families that are in need. Lets face it. Dealing with this disease is very expensive. The thing is that I am the sole breadwinner at this house and so my ability to give is not that great. I don’t know how much money would be generated by the blog. However, if it was to become self-sustaining and I was able to give to research and those in need, well that would be a good thing. Wouldn’t it? I don’t know. Maybe that would complicate things and my fear has always been that it might drive people away. I would try to make the ads suitable to the types of items used in the Batten community. Your opinion would be greatly valued. It’s just a thought and I could go either way.
So where do I go from here? I will write as many stories as people will allow me to. In the beginning they were pretty simple. The stories have grown in length and have become more detailed. There is more commentary from me and more information about your sweet warriors. I hope that more people will say yes as I continue to reach out to the community. They are your stories and you have a say as to the content. The writing style is mine but I will work with you. I will repeat the fact that being Benjamin’s Daddy has lended itself to my sensitivity towards your children. My challenges pale in comparison to those experienced by all of you but I try to understand as best I can. It wasn’t that long ago that I loaded my little family on an airplane and traveled over 2,000 miles so that we, in large part, could meet the Batten princess that made us aware. It might sound hoaky to some, but my life was changed by that event. I have heard stories about the Batten conferences that take place each year and I have seen pictures taken at the event. I have even written about it in spots and I think about how incredible it would be to see it in person. I have always been a little jealous of the fact that I couldn’t be in attendance when they are going on. To be there and to meet so many of these little warriors in one place. Wouldn’t it be awesome if I could go? Well it would be for me and you just never know. I may show up sometime. Until then I will continue to write for as long as I am able. Thanks for following along. There is more to come!
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...