Lets see if I can pull this off...
“I have an incredible story to tell. It’s not that I have done anything incredible or that I possess any attributes that one might consider to be incredible (I am really pretty regular). Rather, it is that I have had some life changing incredible things happen to me in the last couple of years. It is possible that it all may have never happened and it is interesting how it did.”
I have used this paragraph in my blog in previous posts but don't bother looking for it because it may not be there. Anybody that has read my blog in the past knows that my life has been impacted by reading a book titled FEARLESS and that it is possible that I may never had read it. You see I had been on a reading spree of the books that are being written about our Special Operations Warriors (I still am) when I had noticed FEARLESS sitting on the shelf at a bookstore that we frequent. I picked it up and took a look. After looking at the back cover I decided that it wasn't for me. At least at that time. Once I did read the book, I was totally in awe of a Navy SEAL, who's name was Adam Brown, and his life story. Adam was from Hot Springs Arkansas. Through the book FEARLESS and a series of Facebook pages, I would become aware of another Hot Springs Hometown hero of a much smaller variety. That would be little Ali Vise (pronounced like the word alley). The complete story in total has become what I call “My Incredible Story”, but it is not about me. No way! So this is how we get from my love for American Military Warriors to that of Kids with rare diseases and people with special needs.
What is it about following these kids? Parents share their children and all their beautiful little smiles through social media. Those of us that are sensitive to their plights become captivated by the story of their struggles, both of the children and their parents. I am at the age where people are usually grandparents, and to me there is nothing that gets my attention like these kids and the battles that come with fighting a rare disease for which there is no cure. We like to focus on positives and their pristine little features but the reality is that they face a battle daily for their very survival. The parents of these kids hope to increase awareness of the disease that affects their lives and that of their children. They hope that awareness brings attention, and attention brings funding and research. And eventually, that research will bring a cure for the disease that afflicts their little loved one.
They share because they want people to know who their child is and they don't want them to be forgotten. Parents seek empathy and support both in prayer and other outpourings of kindness. They want people to feel what they are feeling! As we continue to follow, these families become endeared to our hearts. Usually, it is just one look and we are done for. I know that was the case for me with Ali.
As I followed her on Facebook the desired to meet her increased as I saw Batten disease continue to take it's toll on her. Her mom, Donya had expressed an interest in meeting us and had hoped that I would be able to attend a 5K run held in honor of Adam Brown in which her and Ali would be present.
One of the things that I have mentioned is that friendships usually develop between fellow followers of these kids. It also happens as a result of just being part of the community that develops around a particular rare disease. Such is the case for Sandra Garrett and our friendship. Sandra is very much involved in encouraging parents of kids with rare diseases through her activities on Facebook. She also is busy spreading awareness on her page through constant sharing of posts. She has a pretty big friends list and I am sure that helps! It was through a mutual friend that we had first made contact. Once she saw my son Benjamin, it was love at first sight for her. If you know me, you know that the way to my heart is through my son Benjamin. One of the things that me and Sandy share in common is our shared love for these kids and our shared desire to spread awareness and to provide encouragement for the families that are affected. We are both very passionate about this. The other thing is that we both had a desire to meet our personal little warriors who had Batten Disease. In her case, that was little Casen from Casen's Crusade. Casen was from the state of Texas. In my case, my trip to meet Ali was coupled with diving Fearless Rock,The Adam Brown Underwater Memorial. Sandy traveled all the way from her home in New Zealand. That is amazing! We both had to do some creative monetary maneuvering to make our prospective trips happen and both our lives have been affected by these trips. My friendship with Sandy, and her relationship with us as a family, has continued to develop and she calls us “Her American Family”. We are in fact that, and I hope that will never change. Sandy was due to visit us this month but had to cancel. We look forward to the day we finally get to meet her in person. We love you Sandy! You have Rock-star status at this house.
My wife Rosie (Rosemarie) is beautiful and her life is a beautiful story. You see she was removed from her home at age two and was placed in foster care. She was in a family situation that was less than desirable for her well being and safety. You see my son Benjamin's condition is genetic, or hereditary. She was helped by a very nice social worker and was brought to the home of a pastor and his family in small town Oregon. Rosie would live with these same people she calls her family and would later become adopted. She lived with these very caring folks until joining the Navy at age 18. She is one of seven siblings.
Rosemarie also has a half sister from her biological mother that she will in all likelihood never know. Because of the situation, she has no medical history from her family other than the knowledge that both her biological mother and an uncle had to have had the same genetic disorder that our Benjamin has. God is Sovereign and Rosie's life is a testimony to that. Sorry! My opinion. I very much love and respect my sweet wife. She has an inner strength and beauty that is much to be desired.
As you may know from reading my blog, we have three boys and we are equally proud of each one of them. As a family, we have been through much, however, each one of our guys would become successful in his own way. Because of Benjamin's condition and the lack of family history we cannot know what his longevity will be or where his condition will lead him to. He is autistic and has had a seizure disorder since he was very young. They are under control with medication now but I can remember to this day rushing him to the hospital with his first seizure. I also remember the frustration of Rosie in getting him the help he needed as we tried to determine what we were dealing with. He was a patient at Shriner's hospital and their help was a large part in him learning how to walk. We saw a geneticist there who tried to find a diagnosis but she was not able to pin one down. She could only say that his condition was degenerative in nature.
One big event in Benjamin's beautiful life took place in 1997. This is when he got sick and aspirated into his lungs. This turned out to be a major medical emergency in which he was driven by ambulance to the hospital in Gilroy California. From there he was Life-flighted by helicopter to San Jose where he was placed on a very aggressive respirator. The doctor said that he could not be any sicker than he was at that time. I am so happy to be able to say that he pulled through and having him in our home has been pure joy ever since. We absolutely love our special guy and our existence revolves around him to a large degree. We accept the challenges that his life brings to ours without wavering one bit. One of the challenges is not knowing what his future will be. However, for the child that has a rare incurable disease like Battens, or say DIPG, the child's future is certain.
I would never try to compare what we have been through with that of a family who's child has a rare disease. The horror of receiving a diagnoses for your child in which you are told there is no cure and that death is certain is unimaginable for those who have not been through it. I can only do my best to put myself in their shoes and to try to think about what it is like on a daily basis to fight for your child's life. Empathy!
I am curious about something. Are you alarmed by my male attention towards your rare kids when you post about them on Facebook? As an example, when I respond with the love heart thing, lol, instead of just hitting like? I hope not!
I had, of course, followed Ali's page on Facebook very closely. I also followed some of her contemporary little warrior counterparts but I had missed one for some reason. It's like I had seen his page mentioned but didn't pay any attention. Once I did notice him I was probably thinking something like “Oh My Goodness, what an adorable little man.” I am talking about little Kane from the Facebook page called Raisin Kane for Batten Disease.
He is the son of Linda Crain from South Carolina. The first picture that I saw was of him sitting on a staircase wearing jean shorts and a Superman shirt. My first thought in addition to Kane's very handsome little physical appearance was that of a picture that was taken of my son Daniel when he was very young. We had just moved from San Diego back up to the Bay Area with the help of my mom and step-dad. At the time we were living at their house. It was Halloween and Daniel went out to trick or treat in a Superman outfit. When I showed the picture of Kane to my wife, she responded in exactly the same way and remembered that photograph. Although Daniel was a little different in age, the thought of both of them caused me to draw a comparison between the two boys.
You see Daniel will be 33 years old in March. My son was given the opportunity to reach his full potential as an adult and indeed he has accomplished much. He is brilliant. Daniel is currently working as an IT professional in North Carolina and he is planning a visit here to Oregon this year. We are so proud of him. In comparison, Kane's life was cut way too short by a disease that shows no mercy to those it inflicts. I am certain that he would have been taught well and that he would have achieved so much in his life. That he was loved immensely by his parents is easy to see by the pictures of him and Linda together. Just like Ali and Donya, Linda and Kane together have that Awe Factor!
There are so many kids with Batten Disease. It is really not that rare. Is it? I wish that I had time to follow them all equally, as they are all so deserving of our attention. Of the ones that I show on my Facebook page consistently, I just naturally have developed little slogans for each one. Like in Ali's case it goes something like this,
“To the one who made me aware and changed my way of thinking. There is none like her, although there are many others!”
For Kane it goes like this,
“Kane is adorable is he not? He will never be forgotten and he is spreading awareness one person at a time.”
The thought is that I don't have that big of a following, but if one person sees his most adorable little face on my page then that's another person that will be aware! Kane, listen to me little buddy. Although I didn't follow you at the time and will not get to meet you in this world, you will never be forgotten. Not on my watch, not in this house!
I really don't know that much about Kane's mom Linda. I have, however, seen enough in her Facebook posts to know that she has been through a lot. If for no other reason, her son had Batten Disease. I know that facing this monster with her son has developed in Linda an inner strength that is missing in many. I can remember making a comment to one of her posts that she is a warrior to survive the ordeal. She deferred to the kids saying that they are the ones that are the warriors and that she is just a heart broken mommy. Heartbroken, yes! I can understand that. But I have to believe that Linda doesn't sweat the small stuff as much as she might have before going through what she has because of Batten Disease. She is able to battle through and warrior on. I can also see that she really cares. Linda, I am so sorry that you lost your little man and I look forward to the day that you are reunited with him. Thanks for allowing me to share about you and Kane here and on my page!
Why do I blog? What do I want to accomplish? What is in it for me? These are all good questions. I have discovered that I love to write. Of course to do so you have to have things or people to write about. I am by nature a passionate person. By that, I mean that I have to be excited about a subject in order to write about it. I would love to write about the American Military Warrior more. They are my true heroes but they share my attention with little warriors as well. I am very passionate about kids with rare diseases and people with special needs. I love knowing that I have made someone's day. The people that I care about and admire are the ones that have rock-star status with me and I love drawing attention to them. Also, Just like with my Facebook page, I like using my writing to bring awareness to causes that I believe in. I genuinely care about the people that I blog about. So what is in it for me? For the most part, just the satisfaction of knowing that I have lifted someone up with the words I write. You know what though, I can't lie. I love it when people tell me that I have an ability to do something well. So in that sense, I am blogging for me too!
“And now, to the one who made me aware and who changed my way of thinking.”
I was so deeply saddened this last Thursday to learn that another family in the Batten community was affected by the loss of their child. Princess Nora is the daughter of Jessica Abbott Montville of Westminster Massachusetts. Nora gained her wings and our hearts go out to Jessica and her family and friends. There are no words that can really help but our family is thinking about you and your family today. Nora you are BEAUTIFUL and I know exactly where you are princess!
I am including a link to a GoFundMe account set up for her memorial in case anyone wants to help with expenses. Thanks!
Our family currently supports, as we are able, the Charlotte and Gwenyth Gray Foundation for the cure of Batten Disease. We will continue to do this because we believe that they have put in place a team that can make a difference. They are able to gather resources and use them in the best possible way. What they do is for Charlotte and Gwenyth but it is also for many others. Consider joining us if you will. I know that they are not the only worthy organization involved in this effort.
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...