I never know where I am going next with this bog I have started. I keep thinking that I will run out of things to talk about one of these days. I hope not though. There is always a lot on my mind. Either that, or there is too much space available up there, lol.
I like doing things in series and was going to continue to expound on a couple of blog posts that I had done called Benjamin’s Daddy, if possible. Last time I talked about the difficult things that can come with taking care of a special needs son like Benjamin and I included Tommy in it. In case you don’t know yet, Tommy is a special needs adult that is the son of my friend JoAnn. Him and Benjamin are so much alike. I was going to call the next post “Benjamin’s Daddy - The Funny Things”. I thought that while there are challenges, there are also funny and precious things that take place, and I am trying to put it together into a blog entry. In case you haven’t been following along, Tommy is suffering with cancer and is being cared for by a hospice staff. JoAnn, I am thinking about you and Tommy all the time my friend. I’m praying too.
I think that I will be able to get back to that eventually but I felt inspired to do this instead. It was going to be a little off the cuff, however, I have been able to think things through a little.
I have said in the past that having a son like Benjamin has affected my appreciation for people with special needs. It’s should be no secret at this point. There are several people on Facebook that I follow which have special needs children as well. I really enjoy seeing their posts about their kids and I think that they enjoy seeing my posts about Benjamin as well. In my first blog entry about Benjamin I talked, in so many words, about being drawn to other kids or adults with special needs and their parents as well. We have things in common. We’ll see other people in public that share our experience and we will turn to them instead of turning away!
There is a Facebook page called Kids with Special Needs that I follow from time to time. Parents share about their kids and often share pages that they have started to bring awareness to the condition that their child is dealing with. In most cases, these kids are adorable but some are not as easy on the eyes. Whatever the case may be, all of them are precious and they deserve every bit of attention that is sought for them. People need to be informed and involved as able. Hint hint!
Social media can be a real negative thing and can cause quite an uproar. I think that we are seeing that in the news a little these days. I’m injecting a little bit of opinion in there and won’t go any further. However, it can be a real force for good when it comes to spreading awareness about causes that would otherwise go unnoticed.
One example of a page on Facebook that I am following is called Ethan’s Voice. I don’t know a lot about Ethan’s condition except for the fact that it included his lungs in a big way. Ethan gained his wings just the other day after a long battle. Many of you already know about this page and followed their story as well. Their journey was difficult to watch at times, but the more I looked at the notifications the more compelling the story became. It became impossible for me to turn away as I felt myself being filled with empathy and concern. I so appreciate this Mamma and her sharing hers and Ethan’s journey. Like so many others, I tried to help by leaving words of help, hope, and encouragement. I really respect this mom for showing us what real love in action is like! I know that she has a bright future ahead of her even though the road traveled is a difficult one. I am thinking about you and I’m praying too.
I am finding that this is mostly a women’s thing. What do I mean by that? I mean that when you look at all these Facebook pages, you will see that most of the people that comment and stay involved are women. Why is that? Am I weird? Can’t this be a guy thing too? Am I some kind of creepy internet guy? Some kind of a prowler with too much time on his hands? Naw. No way! I like, quote, “guy things” too, but I have the time to aide and be a comfort to those who need it. You know what? I’ll make the time! I want to be involved in the lives of others.
I love my Benjamin’s childlike innocence. You know that a big part of his condition is that he is developmentally delayed. He is such a Teddy Bear. Sure, he can get his grouch on, just like his dad can. But when he is in his normal good mood, he is so sweet. I’ll share one example.
Our favorite activity as a family is driving through the beautiful Oregon countryside, looking at all the scenery and listening to music together. Often times Rosie will have some candy treats for us to share. Benjamin sits behind her as she sits on the passenger side, and so I will pass things from her to Benjamin. Part of his condition is that his fine motor skills have never developed to what you would expect from a 26-year-old adult. When he reaches into my hand to receive the candy I am handing him, it’s not the hand of an adult that I feel in my hand. It’s the hand of a child. I LOVE CHILDREN. And I don’t mean say like i.e., a weird pop rock star with too much time on his hands might. I mean more like a benevolent grandfather would.
There are so many causes and groups on Facebook and other places that can garner our attention. It’s almost too much at times. How did I get started personally with all this? It all started with an increased awareness about a very horrific disease called Battens, Or Batten disease. I knew nothing about it until I became aware of it through Facebook. You see, I learned about this most beautiful little person who was battling it, through a series of pages that I followed. A lot of you already know that I am talking about Angel Ali. I learned from her page about others that battled this monster. Sweet Sophia from Kentucky, Prince William from Arkansas, and Master Casen from the great state of Texas, are just three others that are Ali’s contemporaries. There are so many others. Batten disease is considered to be rare, but it’s not really that.
~Ali it is no coincidence that the day that I am writing this blog entry coincides with your Birthday, July the 9th. It’s your second birthday in heaven. We want you to know that we love you and your family so much. You are never forgotten little girl. Big Big Happy Birthday! Meeting you was worth every penny spent and every mile that was traveled. You were flawless in appearance and even more so now. There are no regrets, only great memories of one single day! ~
“The fingerprints of those we have touched can never be erased.”
If you don’t know her story already, I highly recommend that you check out Ali’s website to learn more about her:
Please support Ali’s foundation as they take the fight to this disease with Ali’s heavenly help!
All childhood diseases are awful and need our attention. I may be preaching to the choir here as most of those I spend time with on Facebook already know about Battens. But not all my readers may know. Batten disease is especially hideous. It takes the most beautiful and perfect kids and takes them through a series of debilitating steps that results in seizures, immobility, and blindness just to name three. They have to be tube fed. The combination of seizures and lung congestion takes them to the completion of their journey. There is no cure.
I was talking to my friend Jeff the other day at work about the disease. He is younger than me (who isn’t at this point) and he has two boys that are grammar school age. Although unlikely, it could have been possible that both his boys might have been diagnosed with the disease when they were a little younger. He is a great dad to his kids and shudders when he thinks about what it would be like to deal with something like that. That is just what has happened to the Gray family!
Getting involved is where the challenge is. Like I said earlier, there are so many causes out there. Have you lost a loved one to cancer? That might motivate you to give to cancer research. Do you know of, or have someone in your family, that has been wounded in Iraq or Afghanistan? Are you just plane patriotic and proud of those who have served, as I am? Then you might want to support causes that support our wounded warriors. PLEASE DO! They so deserve our help.
Have you been watching the news? It’s not good, is it? There is a lot happening out there. Sometimes I find myself turning it off after saying that I have had enough for one day. It is so easy to rush home and close the door behind us. We hug our family members and do our best to keep them safe. It is so easy to stay within ourselves and not reach out, but there are people out there that need our help. I know you don’t need to hear this right now and it sounds like I am on top of my soap box. I really am speaking to myself as well. I need to do a better job. People need us. These beautiful Batten kids and kids with other rare diseases have shown me this. People with disabilities need our help as well.
There are obviously many ways to get involved. Many of us are already doing much! There is always the need to spread the word by talking to friends and neighbors who we have relationships with. This spreads awareness concerning Battens and other diseases and conditions. Let’s talk more to people. The combined effort of all of us working together is helping. I see it already.
There is also giving of our cash resources (I’m stating the obvious, aren’t I?) The truth is that it takes money to do the work, to do research. To be fair, not everyone can help in this way. Maybe you are retired and on a fixed income. Maybe, you are disabled and you only have enough for the basics of life. That’s okay. However, many of us, like myself, can afford to do something. Let’s DO SOMETHING!
There are other causes that I want to support, such as helping our wounded warriors, but the passion I am speaking about right now is helping in the fight against Batten disease. I know of at least a few different organizations that support increased funding and awareness for a cure to Batten disease. I can visualize all these organizations banding together in the fight and helping one another to achieve the goal. I think it will happen. I wanted to mention the foundation that I brought up earlier this week one more time. The Charlotte and Gwenyth Gray foundation.
Why the Charlotte and Gwenyth Gray foundation? All that are working in this effort are important. It’s just that this one has caught my eye and I have looked at their website. It just looks so promising. It kind of got me re-energized and excited. I love standing behind things I believe in even if my resources are limited. From what I have both heard and read, Gordon Gray is a Hollywood producer. This tells me that he has a sphere of influence in which he can work. There has already been a team of very impressive professionals that has been assembled. The Grays, Gordon and Kristen, are seeking to raise ten million dollars in emergency funding so that they can work with researchers in finding a cure to save their children, and others as well. If you have not caught it yet, both of their adorable daughters, Charlotte and Gwenyth, have been diagnosed with Late Infantile NCL Batten Disease CLN6. There is cause for optimism when it comes to the research that has already been done!
Are you already supporting another organization that is fighting Batten disease? DON’T STOP! Stick with your heart. They are all working in the effort.
Are you involved with sharing with people on Facebook and in other forums? Stay with what you are doing. If that is what you are able to do, you are doing a very good thing. Spread awareness! That is still so needed.
Please understand that I am not bragging. I am just trying to be a cheerleader! We are a single income family without a lot of disposable income. I gave a one-time gift on the first of this month but I want to give concurrently as well. I can’t afford to do a lot but I can DO SOMETHING. I am going to do something! If we all do something whether it’s through our time or with our resources, and even with both, it will make a huge difference. Many of you are already doing a lot. I am sure that all these Batten families, and those who have other causes, really appreciate you!
In closing I am including some links to Facebook pages that have been set up by the parents of the Batten kids that I have mentioned within this blog. They are all beautiful kids and eternal royal rock stars! If you are one of my rare FB friends that hasn’t heard yet about the disease, I would encourage you to take a look. Maybe you have seen my post or posts by others but haven’t been interested in knowing more. I would encourage you to DO SOMETHING! Be involved because you are needed.
You know what? I would appreciate you sharing this blog post with your friends. Also, I wouldn’t mind hearing from some people through friend requests on Facebook. I like friends. Friends are good! BUT, the very most important thing is that you share the links for both of the foundation pages that I have shared within this blog post.
Thanks so much!
~ Benjamin’s Daddy, (who just happens to go by the name of Greg) ~
I might be a little all over the place in this blog post. We’ll see…
Who am I? Good question! Well most of you have been reading my blog and you already know some things about me. I am 55 years old and I live in Oregon, although I grew up in San Jose, California. I served in the Navy and that is where I met my sweet wife of almost 35 years. We served together. I also worked in Aerospace and Defense for years and now work in the Aviation field as a mechanic. I have a wide range of interests. I like professional and college sports but they are not everything to me. They are just entertainment. I work pretty hard at working and I really enjoy my time off with my two peeps, Rosie and Benjamin. I am an avid reader. Mostly, I love reading military history. Especially the books that are being written by the brave individuals that have served in Iraq and Afghanistan. No matter how you feel about the wars, you have to admire the courage of those who have served while also appreciating their sacrifices. I read myself to sleep every night with the stories that are being told by them.
My daily activities consist of the usual. That being, waking up early each morning and commuting to work. I work ten hour shifts most days and I have to admit that it sometimes takes its toll on me. I come home, eat dinner, watch television if something of interest is on. That’s not that often anymore. Then there is all the other usual stuff. You know, yard work, wash cars. Yuck! I break up the monotony of life with Scuba diving on occasion, exercising (on occasion, lol), and now blogging. I haven’t been blogging that much lately but it is something that I really enjoy doing. I haven’t been blogging long and I am still figuring out the ins and outs of it.
You know. Things like figuring out what’s of interest to people? How to increase viewership? I have to say that it is not that important to me that I have a huge audience. I only care that people receive something from reading what I have written. I also have to be concerned with staying within Fair Usage Law guidelines. You can’t keep everybody happy but it’s nice to try.
There are challenges to blogging for me. For one thing, it’s time consuming. I am thinking about what I am going to write about all week. My job is often kind of repetitive so it gives me opportunity to think about things as I work. I often find myself going to the note pad on my phone, especially during breaks, as I think of ideas. I arrange my notes after getting home at night and sometimes start on my blog. Most of the time the work is completed on Saturdays. When Saturday comes around, it takes me most of the day to do the blog. All of a sudden I am like a newspaper reporter working on meeting a deadline. It’s crazy but I am usually happy with the finished product. I am by nature kind of lazy at times and have to be motivated to get things done. I am also a passionate person. What do I mean by that? It means that I like to write about things that I am excited about and I have to be motivated or moved by something to get things done. I am prone to move from one thing to the next as if I were A.D.D. or something.
Things, like our yards suffer, but that’s okay. That stuff gets done in time. It is mentally taxing for me to write. I am always thinking about it. Like I said earlier I want to write about things that I feel would be interesting to people while also sharing things that are of interest to me. You remember the show Seinfeld right? I didn’t watch it much but I know that it was referred to as the “show about nothing”. Of course it was a raging success. I don’t want my blog to be about nothing, so I believe in quality over quantity. I am just an average American guy in most respects. There’s not too many exciting things going on around here but I have some common interests with people that I am acquainted with, and that helps.
I recently made some changes in my blog and I think that it left some people confused. Don’t worry, I have been confusing people for most of my life, lol. Why the changes? Sometimes I am prone to make rash and reactive decisions and I felt it necessary in the moment. I’ll try to do a better job with continuity from here on out.
There are things that I want to share of course in my blog. Maybe some of the things that I have experienced. I love sharing about my kids. So far I have talked about Benjamin but have also mentioned my other two boys. I would love to share more about my family later. I have said it before but I consider all three of my boys to be exceptional people. Benjamin gets a lot of attention because he is dependent on us and is a big part of our existence. I have shared pictures and comments about him on Facebook and people have expressed to me how much they enjoy the posts. I really appreciate each and every comment and ‘Like’ that his posts receive. Thank you all so much!
There is my career of course. One time I was talking to a friend in the Navy and he was talking about the medals that he received while serving in Vietnam. He remarked that “the medals and fifty cents will buy you a cup of coffee”. Well coffee costs a lot more now. Working in aviation and the defense industry has provided me with some great memories and some interesting conversation. But I think that for the most part, “that and four dollars will buy me a cup of coffee”, lol. Still there is some things that might interest you there.
You know, I think that in this day and age that being married to the same person for 35 years is significant. As a couple, I think that me and Rosie have been through an awful lot and I might like to tell you more some time. I have to say that our relationship is better than it ever has been and there is a little bit of a story there. I know that everyone has their own story to tell. I wish that all five of us could be living in the same place but it’s just the three of us for now. We are like the Three Amigos and I am happy for that!
So like I was saying earlier, I have a big interest in the stories that are being told by our veterans as they return from these wars. I read most of the books on my kindle and many of the chapters have quotes from the book underlined to draw attention to them. I wish that I had written them down and cataloged them for future use because they are just incredible. If applied, these quotes are so useful for leadership and just handling life in general. There is nothing that I have seen in there military training that I feel is in conflict with my world view. I am a veteran myself and that helps to fuel my interest. I did not serve in a time of war though and have a profound respect for those who have.
I also have a profound sensitivity and interest in people with special needs and those with rare and or terminal diseases. I love these little critters! Probably because I have raised one of my own. Benjamin is the center of our attention! I especially love the little people. They are like little warriors to me. Just like our warriors in the military, these little people live to fight the enemies that would seek to destroy them. They are so brave and although frightened at times, they face their enemies with great courage and strength. This is where the sensitive side of me comes in. I look at, for example, a young child facing cancer and think about all they go through on a regular basis as they battle. I especially think about kids who are terminal or have no hope for a cure. This is just heartbreaking to me.
It was over two years ago that I first learned about Batten disease. I had never heard of it before. I have now seen so many pictures of children with Battens who are either in the thick of it or who have gone on to “gained their wings”. These are perfectly beautiful children who go through a series of degenerative stages and eventual succumb to the disease for which there is yet no cure. A cure needs to be found.
It has been some time now since I had heard about a family facing Batten disease with not just one of their children but with both. Charlotte and Gwenyth Gray are two of the most beautiful little girls that you are ever going to see and they both have this disease. Their parents are in a position in which they can have a large influence in the fight and they have chosen to take up the cause. They are doing this to save their own daughter’s lives but also to help all kids who are facing this battle. There are so many families that have now taken up this cause and there are great organizations that have been formed. This week, I chose to give financially to the Charlotte & Gwenyth Gray Foundation and we are considering becoming recurrent donors. The family has assembled a team and is seeking to raise the ten million dollars that they feel is needed to fund the research to get this done. I would encourage anyone that reads this to check out the foundations page and to consider giving to this cause in one form or another. You can go to the foundation's page by clicking on the link provided below. Please do! The page is full of information and tells you how you can donate towards finding a cure.
There are so many causes out there that are worthy of our attention. There are causes for those who are facing illnesses like I just mentioned. Make sure that they are worthy of your support. There are also charities that support wounded warriors that need our help. Both types of organizations are important to me personally and they deserve our attention. I chose to highlight one organization this week and may bring them up again. I know that we can only do so much by ourselves but every little bit helps and we can all work together.
I ran across this picture that was posted by a Facebook friend named Kelly the other day. Hi Kelly!! When I saw this, I was thinking that it really nails down how I feel about things. This is what is important. What defines us as people? Tell me what you think!
That’s what I want my blog to be about. Contributing to the lives of other people. Sharing things that will lift others up or help them in some way. I like writing about things that inspire me. When I do this the material just flows out of me. It is almost effortless. Yes, I have to be inspired to write.
I have been told that I write well by a few people but I promise that I won’t let that go to my head. I have way too many character flaws that plague me. I am not a very good verbal communicator. I am too wordy and have problems getting the point across. There has been a number of times when an individual, say my supervisor at work, looks at me as if he is wondering why I shared so many unneeded details with him in a conversation. And I in return think to myself that I have done it again! It all makes sense now, lol. I like describing things in detail I guess.
So I said that I was going to be a bit all over the place in this blog post and I like to keep my promises so I’ll share this with you in closing. There are some sentiments regarding friendship that I wanted to share in a Facebook post but then I thought to do so here. It is a little redundant to what I have already said but I choose to keep it in tact. Here it is:
“So I was thinking that there are some friends on Facebook that I have really begun to appreciate. You see, I don't get out a lot during the week due to my work schedule and social media is the way I socialize. I also like getting involved in causes. Sometimes I've gone a little overboard, but overall, I think my heart has been in the right place.
The people that I appreciate are those that are genuine and are interested in me for the right reasons. For example, they see my posts concerning members of my family, like my son Benjamin or my sweet wife Rosie and they respond. Some people hit "Like" continuously and some people leave really thoughtful and kind comments. I watch these things and I know who you are! You're not interested in me because of my association with any one person or group of people. You just like me because you see something in me. You are very genuine and you are so appreciated! Some of you are parents of special needs children like we are. Some of you are fellow patriots like I am and you love those who serve to protect our freedom. Some of you are just really nice people or some of each of the above. Either way, I want you to know that I really value your friendship!
Why am I interested in being your friend? It's not because of your social status or standing in a particular group. It's not because of your physical appearance or any particular talent you have, although I appreciate talented people”.
And I’ll continue here by adding the following:
I genuinely care about people. I love my country and those who serve it in one way or another. I love my God and my family. I also love people that to some are less lovable, although there is room for improvement there. I have tried to let people know through comments and instant messaging, on Facebook, that I really appreciate them. It gives me an opportunity to “hang out” with people that I have things in common with. I probably haven’t done an adequate job of telling you all this, but I hope that you understand that you are important to me! I am not after your friendship based on your gender, your appearance, or your age. And it's certainly not on your social status. While it’s nice to know some people with “status” I am interested in being your friend because I value you as a person. You automatically have “status” with me because you value the things that I value. I am after you just because you are who you are!
Thank you so much for taking the time to read my big long blog post. I am not sure where this all will lead me but that is a big part of the fun of it!!
Is it them or is it us? Is it the feelings that they produce in us or is it that there is something truly special about them? I think that the answer has to be all of the above. It is them, but they also do something to us. Once you give a little piece of your heart to these kids and their families, they come close to taking all of it. Let it happen!
I would like to welcome to my blog Sanfilippo families, as well as, families in other MPS communities. I am grateful for every opportunity to write about those who battle an MPS disorder. This, of course, alongside their special children. This is a labor of love that is extended to each one of you! Scroll down to see MPS family titles.
Highlighting a previous blog that might interest you:
Forever Royal - The Final Version
One child in a family with a rare disease is a challenge. What if there is two? Heartbreak multiplied you pick up the cause and do your very best to make a difference. That is how a normal family becomes Forever Royal ...
Take the titles listed below and go to month and year listed in the archives.
January 2017 -
*The Story Between The Lines
February 2017 -
*I Know Just Where You Are
*My Kind Of Royalty
March 2017 -
*The Caring Type
*Face to face: A Fairy-tale
April 2017 -
*No Ordinary Love
*A Rare Friendship
May 2017 -
*Tyrell and The Rare Love Story
June 2017 -
*Seth and The Healing
July 2017 -
*Little John and The Reason
*Sands and The Scottish Princess
August 2017 -
*A Rare Kind of Devotion
*The Giggle Box
September 2017 -
*Sweet Montanna and The Status
October 2017 -
*The Blog About My Blog
November 2017 -
*Lydia, I Love You!
*Kayden And The Change In Plans
December 2017 -
*Those That Are Like Them
January 2018 -
*Nora Skye - I Know Just Where You Are
*Brock and The Priceless Memories
*Jamesy Boy and The Treatment
*The Priceless Princess From Beyond
*Forever Royal - Part One
*Forever Royal - Part Two
*That Kind of Love - Conner's Story
*What I See (She is a Butterfly)
*No Longer Alone - Kristiina's Story
*Things We've Talked About - Oscar's Story
*The Reason Why - Hannah's Story
*Kayla's Perfect Princess - Breanna's Story
*Where Do I Go From Here? - An information only blog
*Warriors Unaware - Mia and Kaleb
*Her Little Story
*Someone Like Raelynn
*Forever Royal - The Final Version
*Awfully Beautiful - The Life of Noah and Laine
*A Lifetime of Love - Tegen's Destiny
*Forever Beautiful - Gabi's Story
*The Miracle Baby - Amelia's Story
*Dylan's Life - A Small Town Story
*Princess Grace and the Challenges
*Anything for Tessa - Her Story
*Haley Bug's Battle - A Family Story
*Journey Unexpected - The Rich Family
Sanfilippo Syndrome and other MPS family titles -
*The Beautiful Light of Haidyn Grace
*Any Distance Traveled - Reagan's Story
*The Missing Someone - Kiernan's Story
Archives - Use title listed above with the applicable month and year.
Highlights from the beginning of gregster60.com -
Benjamin's Daddy - March and June of 2016 - Revised May 2017. Titled Benjamin's Daddy Revised.
My Fearless Adventure - April and May of 2016
A Different Type of Warrior - January 2017
Larry - February 2017