I can now say that I have done a lot of different things and have held many different positions in my work and home life. I am a husband and a father. I am a Christian (that means Christ follower, although I don’t do that too well sometimes). Health wise, I am a cancer survivor and a diabetic. This is not that big of a deal. There are plenty of other people in the same boat but I am thankful for the years that I have been given. I served in the armed forces of the United States through active and reserve duty. I spent approximately ten years in Aerospace and Defense, working on things that many would consider critical to our nation’s defense. These days I work on helicopter components for a heavy lift helicopter company here in Oregon. I worked diligently on receiving my A&P License. Receiving it has helped me provide for my family for over another ten years now. I have never been the best at what I do but I have always given it my best effort and have contributed to the team that I was part of. I have never made a ton of money. As a matter of fact, I am on the heavenly retirement plan. I hope heaven gets here before I am no longer able to work. Yes, I have a sense of humor.
So where am I going with all of this? Of all the positions of responsibility that I have held, the greatest position that I have ever held is that of being a parent. Specifically, A parent of a Special Needs person. More specifically, My son Benjamin. In my book this is a position of great honor. I actually have three sons. Benjamin has two older brothers. His oldest being Daniel and the middle brother being Kenny. I am so proud of Benjamin’s older brothers. I love and miss both of them. They are both highly intelligent people. They get that from their mother’s side. They both turned out to be successful in spite of my lack of parenting skills. I have always loved being Benjamin’s dad, although there have been challenges along the way. Because of Benjamin, I have developed a sensitivity towards other children and adults with special needs.
Benjamin’s favorite place to go is this mall that we frequent. He loves the book store and all the sites that are there. He loves eating together at the food court, although he has problems keeping his eyes off of the girls when he needs to be paying attention to what’s on his plate. I notice that most people just give him a quick glance or a longer stare as we wheel him through the mall. However, every once in a while, we run across somebody that smiles at us or says hello. Sometimes, we run into another individual who is accompanying another special needs person. It might be someone with Cerebral Palsy, Downs Syndrome, or something altogether different. Smiles and hellos are exchanged. My desire is almost always to reach out to people to whom we have so much in common with. I especially have a thing for little damsels in distress. Hey, I am a guy. Just keeping it real!
Benjamin was late in reaching all his milestones. He has never received an actual diagnosis. He saw a geneticist when he was really young but she was never able to nail one down. Benjamin is developmentally delayed and functions at different levels in all the different areas of development. He has been on seizure medication since he was very young to control them. He has autism and difficulties in the area neuro-muscular function. Benjamin learned to walk later than normal and now needs assistance when he is not near structure or furniture to aide him in maintaining his balance. He has always been good natured and happy. He is so funny and full of surprises. Benjamin communicates with us through a series of signs, gestures, and broken verbal exchanges. For example, he bangs his empty cup on the table when he needs more to drink. His mom reminds him to use his words.
So as would any other parent in my position I have other concerns about Benjamin and our future together. My wife and I are dedicated to caring for this guy. He brings so much joy and laughter into our home. We made the unconscious decision a long time ago that we would keep him with us as long as possible instead of placing him in, say, a group home. He functions at a low enough level that it would be difficult for him to live outside our home. Plus, he would have to leave his little Man Cave behind.
So I don’t worry too much about the things I am concerned about but they are concerns. What kind of an effect will all the years of being on seizure meds have on Benjamin’s body? Will he develop issues with his internal organs? What if he is experiencing pain and isn’t able to communicate it to us? Will his physical body deteriorate further leaving him difficult to care for in our advanced years? Will he live beyond us and then not be able to understand why his parents are no longer there for him? Will we have to say goodbye to him if he proceeds us? Not to mention that things aren’t getting any easier in this world to say the least. What about my retirement years when my income drops? Again, I don’t sweat these things. God is in control.
One of my Facebook friends that has become increasingly more special to me is a lady named JoAnn. She is retired now and has a special needs son named Tommy. Tommy is 38 years old. The more I talk with JoAnn, the more that I feel we have in common. Tommy and Benjamin certainly have many things in common, although Tommy is a little older than Benjamin and functions at a lower level. Tommy was recently having issues medically that required him to be examined by doctors. It was determined that Tommy had an aneurysm that required immediate surgery. It was discovered during the surgery that Tommy had cancer that was spreading through his internal organs. His family’s worst fears were confirmed after consulting an oncologist. It was felt that Tommy would not be able to endure the treatment necessary to rid him of the cancer. Therefore, Tommy is in a hospice type of situation. JoAnn is currently awaiting his transfer to a facility nearer to her home. JoAnn and the rest of Tommy’s family are right in the middle of the type circumstances that we could face someday. Aside from the cancer, JoAnn deals with some of the same challenges that may await us. Again, I try not to stress over the possibilities, but the concerns are real. So, like many others, I am praying for Tommy, JoAnn, and the rest of their family. I am also praying for other families with members that have special needs and I try to stay involved socially and financially as I am able.
So where am I going with all this? I have a lot of things going on in life right now. My involvement with others that have similar circumstances, through social media, brings me the most fulfillment. I really enjoy being part of a community that seeks to bring honor to and care for people who should be societies most honored class of individuals. Most of all I love being Benjamin’s dad. This isn’t to say that I don’t love my other two boys an equal amount, but they are independent and self-sufficient. It’s a privilege to care for someone that requires special attention. He SO deserves it!
Honestly, I think society should embrace individuals such as Tommy and Benjamin. I don’t want to digress here but I had a thought. I have heard it said that the “R Word” (retard) should be done away with. I would agree except for one reason. I think that people that stare or turn away from people with special needs are retarded. I would agree that some of the Special people in the world are hard to look at but these people should be honored and cared for. Even I find it hard to not look away in some cases. Parents need to teach their children this very thing. People should reach out to those who have special needs and seek to help as they are able. This help can come in many forms. A smile and a kind word cost nothing but can mean so much! Okay, I am off of my soap box now.
There are so many Facebook pages that draw attention to people with special needs. Most, if not all, are worthy of our attention. It would be impossible to follow all of them. The least we can do is to be an encouragement to others.
I love being Benjamin’s daddy…
Concerning kids who battle Batten disease (neuronal ceroid lipofuscinoses or NCLs), “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.” That is what happened to me!
Hello Everyone. These kids changed my life to a large degree as I was taken over the plight of one little girl. Through these kids, I have learned that it is important to look beyond ourselves and take notice. I've stated that Kids that battle are the most special and the most amazing and I believe that this is true. They are strong and resilient, even if unaware of the plight that they are involved with. I first became aware of kids that battle Batten disease as I learned of a little girl who fought the disorder. She really caught my attention and I began to write through a series of events …. never looking back. Hidden in between the titles of all of the stories is my own. These kids taught me how much I love to write. I’ll never win an award but the kids that battle taught me that I have a passion for sharing their stories with others. They are stories that are full of heartache and grief. From a distance though, you can observe a love that is profound and undying.
I have now branched out a bit to include some of the families whose lives have been changed by having a child who battles MPS (mucopolysaccharidoses).
The science behind how the cells of the human body work is fascinating. That being said, the result of what takes place when those cells don’t function correctly is devastating. Lysosmal Storage Disorders are my area of focus and these two groups of diseases are both LSDs. Perhaps I will add another lysosomal storage disorder community as time continues. Whatever the case may be, this all started because I was made aware of the plight of one little girl who changed me. I hope that you will take the time to look within. Thanks for doing so.
Blogger and Advocate
HOW THIS BLOG WORKS -
Take the titles listed below and go to month and year listed in the archives below (way below).
January 2017 -
*The Story Between The Lines
February 2017 -
*My Kind Of Royalty - CLN2
March 2017 -
*The Caring Type - CLN2
*Face to face: A Fairy-tale -CLN3
April 2017 -
*No Ordinary Love - CLN2
*A Rare Friendship
May 2017 -
*Tyrell and The Rare Love Story -CLN2
June 2017 -
*Seth and The Healing - CLN2
July 2017 -
*Little John and The Reason - CLN2
*Sands and The Scottish Princess - CLN3
August 2017 -
*A Rare Kind of Devotion -CLN2
*The Giggle Box - CLN2
September 2017 -
*Sweet Montanna and the Status - CLN3
October 2017 -
*The Blog about my Blog
*Sebastian's Story - CLN8
November 2017 -
*Kayden And The Change In Plans - CLN3
December 2017 -
*Those That Are Like Them
January 2018 -
*Nora Skye - I Know Just Where You Are - CLN2
*Brock and The Priceless Memories - CLN8
*Jamesy Boy and The Treatment - CLN2
*The Priceless Princess From Beyond - CLN2
*That Kind of Love - Conner's Story - CLN2
*What I See (She is a Butterfly) - CLN1
*No Longer Alone - Kristiina's Story - CLN2
*Things We've Talked About - Oscar's Story - CLN7
*The Reason Why - Hannah's Story - CLN3
*Kayla's Perfect Princess - Breanna's Story - CLN2
*Warriors Unaware - Mia and Kaleb - CLN2
*Her Little Story - CLN1
*Someone Like Raelynn
*Forever Royal - The Final Version - CLN2
*Awfully Beautiful - The Life of Noah and Laine - CLN2
*A Lifetime of Love - Tegen's Destiny CLN1
*Forever Beautiful - Gabi's Story - CLN7
*The Miracle Baby - Amelia's Story - CLN1
*Dylan's Life - A Small Town Story - CLN2
*Princess Grace and the Challenges - CLN2
*Anything for Tessa - Her Story - CLN2
*Haley Bug's Battle - A Family Story - CLN1
*Journey Unexpected - The Rich Family - CLN2
*My Life, My Everything - Lydia Rose - CLN2
*A Love That Hurts - Shashka's Story - CLN2
*The Things Looked Forward to - Addy’s Story - CLN3
*Love Complicated - Bailey Rae's Story - CLN3
*So Many Questions - Evelyn's Story - CLN2
*The Feelings They Produce - Violet's Story - CLN2
*Because of Love - Frankie's Story - CLN2
*The Need to Breathe - Scarlett's Story - CLN2
*The Beautiful Light of Haidyn Grace - MPS3
*Any Distance Traveled - Reagan's Story - MPS3
*The Missing Someone - Kiernan's Story - MPS3
*The Transformation - Victoria's Story - MPS3
*Not by Accident - The Charlie Grace Story - MPS1
*The Difference They Make - Harvy's Story - MPS6
*Love Profound - Veda Rae's Story - MPS3
Highlights from the beginning. When the blog was named 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