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) ~
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
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