I can now say that I have done a lot of different things in my life and that I have held many different positions at work and at home. I am a husband and a father. I am a Christian (that means Christ follower, although I don’t do that too well sometimes). I don't see why we can't sit down together and have a beer or two. Do you? 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 for 8 years. 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 Airframe and Powerplant 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 daddy, although there have been challenges along the way. Because of Benjamin, I have developed a sensitivity towards other children and adults with special needs. (This as of late, has transferred to children that have rare and fatal diseases. Especially those affected by Batten Disease. These kids and their families have become my passion!)
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! The term Chivalry comes to mind. Perhaps you will have to look the term up as it is somewhat outdated. It's meaning still fits today in some cases!
Benjamin is my heart. He 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. I remember the first time that he said the work cookie. (It was very recent. He said it with a “W” in it so it sounded like cook-wee. He has since corrected that but it still sounds very cute. As for his daddy, I kind of still like saying it the old way. Would anyone like a cookwie?)
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. The care that he would receive in a group home would be less than he deserves. He would just sit and stair at the walls a lot of the time. At least that is my fear.
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.
As of the time of the original version of Benjamin's Daddy:
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. (Revised since the original version of Benjamin's Daddy): It was determined that Tommy had an aneurysm that would normally result in immediate surgery. Tommy's situation, however was complicated. It has turned out that Tommy also had cancer.
According to JoAnn:
"He was too weak to have the surgery for the aneurysm so that never happened. He was a ticking time bomb and we worried the aneurysm would burst. Months later his tummy was very distended and hard and he was sent to hospital in much discomfort. We ended up allowing exploratory surgery even though it was a huge risk. We couldn't just leave him in pain. It was during this surgery that they discovered stage IV colon cancer that had spread."
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 daddy. 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.
I decided to do a revision to my original version of Benjamin's Daddy because I wasn't able to do as much with my blog when I first started. Benjamin's Daddy was my first blog entry and I have learned a lot since that time. In the course of that time span, we lost Tommy to his cancer.
Tommy fought like a brave warrior. He surprised his entire family by fighting so hard and hanging on with everything that he had. In the end he received a heroes reward. I have no doubt as to where Tommy is right now. God loves children and those who are childlike. Actually, he loves all of us but especially kids! As you would expect, JoAnn has struggled greatly with the loss of her special guy. Just ask any parent that has lost a child to cancer or even Batten Disease. They will tell you that the pain never goes completely away and you never heal completely. You just learn to cope with the loss through whatever means that you can. JoAnn is in the process.
There is a lot of heartache in this world along with things that bring us a lot of joy. There are people that are hurting for sure. The very best reason for living this life is to live it for others. When it comes to social media there is a lot of abuse but there is also a lot of good things that are happening. The way it is used by people to stay in contact and to support one another is the best thing that I have encountered. It was through that avenue that I met JoAnn and a host of others. The list continues to grow but JoAnn will always be a good friend. We have both been the parents of Special Needs children and we think a lot alike.
There are so many Facebook pages that draw attention to people with special needs and also those who have rare diseases. My passion. Most, if not all, are worthy of our attention. It would be impossible to follow all of them but we can all do the best that we can. The least we can do is to be an encouragement to others and to be there in every way that we can. I take it very seriously. It is an honor and a privilege to be the parent of a special needs adult. Especially one that is as charming as my son is. Yes, I am prejudiced in that way.
I love being involved with people that are facing difficult battles with their kids. I have to say though that I also love being Benjamin’s Daddy!
A few pictures of Tommy as he was growing up!
In my blog titled, A Different Kind of Warrior, I talked about a man named Stephen Pecevich and his daughter Sydni. Sydni was treated for brain cancer. The treatment was successful however, it left her with very special needs. She continues to need medical treatment which brings mounting medical bills with it. Stephen has set up an account to help with the medical costs. He did this only when it became apparent that he could no longer handle the costs on his own. He is a really good guy and a devoted father of the rarest kind. Please click on the link below if you think that you can help. Thanks!
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