“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.”
I love reading about members of the Special Operations community. I spend many of my breaks at work reading about their stories. I fall asleep each night with the mental pictures that are conveyed to me through the pages. These are rough men. Mentally and physically tough guys. They operate under the most challenging of conditions with extreme calm and strength of character. My heroes wear camouflage. I fail often times at trying to emulate the qualities that I see in these guys and I respect them greatly.
I admire their toughness and try my best to exhibit these strengths in my own life, but I have to admit that I have always been a little bit on the sensitive side. I am by nature a sensitive guy and I have never hidden that fact. This is especially true when it comes to my son Benjamin. I love him and really have a sensitivity towards all people with special needs. I have two other sons, Daniel and Kenny, and I’ll talk about them sometime. I love all three of my boys.
I think that it is normal and good to pay special attention to those who need extra attention. It is a good thing to give our time and resources to those who need our help the most. If you look in the March archives of my blog you will see an entry called Benjamin’s Daddy. It talks about my relationship with my son Benjamin. In that post I speak a little bit about another special needs person named Tommy. He is the son of a really sweet lady named JoAnn. Tommy is battling the cancer which was found when the doctors did exploratory surgery for another issue. Tommy is 38 and functions, in some ways, at a lower level of understanding than my Benjamin.
One of the things that I tried to talk about in Benjamin’s Daddy is how much value people with special needs have for our society if they are given the place of honor they so richly deserve. Perhaps a person has a physical challenge but mentally that person is as sharp as a tack. In that case they should be admired because they work extra hard at functioning in society, whether it be in their profession or just in life. They deserve our respect and assistance whenever needed. Often times people are both physically and mentally impaired. They don’t function at a level that is in-line with the number of years they have been on this planet. Some conditions are degenerative. These are the folks that need our constant attention or oversight. That’s my Benjamin. People with special needs teach us a lot about ourselves and the values that we hold. Often times, they teach us how to be good servants. To the right people, they bring so much joy!
We were eating at a Taco Bell one Sunday after church and had a really neat experience. There was a young lady seated in the booth next to us who had Downs Syndrome. She was so cute and very personable as well. She was saying hello to everyone around her and turned around to say hello to us. She noticed Benjamin as well and asked questions. I can’t remember her comments but they were very positive. She had a big smile on her face and I certainly had one on mine. This kind of stuff makes me melt inside! As she was socializing with everyone, a younger gentleman sat down in the booth with her. He was just an ordinary guy like myself. Was this her brother or a friend? She introduced him as her husband and I thought something to myself like “you are one righteous dude! How cool is that!”. They finished their meal and said their goodbyes. For some reason, that all really left an impression on me.
As I have said before, the church that I go to is very welcoming to people with special needs and we really feel welcome there. I have noticed one individual there that is an adult male. He sits with somebody that I assumed was his caretaker. Just about every service, he will randomly belt out a loud noise that can be heard throughout the auditorium. No problem. The pastor just keeps doing his thing without giving it any thought. I have always wanted to go meet this guy and say hello but had yet to do so. Well, last Sunday they sat right across the aisle from us and I went and said hello. His name was David. David! It is so nice to meet you! I shook hands with him and said hello to both him and his caretaker. I was hoping to talk more after the service but a problem arose. I received a message on my phone that I thought I needed to answer right away. Big mistake! It could have waited. My job was to stay with Benjamin. As you are probably aware, me and him share a special bond and he is better behaved when dad is around.
I left the service to send a reply and sat down in the seats in the lobby to do so. I was typing away when my attention was drawn away by a scene that had formed to my left. There on the floor was Benjamin with Rosie and several other people hovering over him. Apparently, Benjamin had gotten out of line in the service and Rose tried to remove him but he wouldn’t budge for her. Everything escalated into a big distraction and a couple of the ushers had to drag him out of the service. They were obviously shaken up by the fact that they had to take this type of action but I assured them that they had done nothing wrong. The pastor did a great job of handling the situation. He regrouped and pressed on with his message. We felt like it was best to leave that day but we’ll be back. Both me and Benjamin had a really hard day.
My son is developmentally delayed and has a seizure disorder for which he takes medication. He is mostly non-verbal and communicates through signs, gestures and simple words and phrases. Benjamin’s condition also involves Autism and that brings other challenges. Ones like we faced at church that day.
His lack of an ability to communicate things to us in a normal manner is always a concern to me. How do I know when he is hurting inside his body? How does he communicate when he feels something isn’t right? Even worse, what if he is stricken with something that is life threatening? How do I explain to him the medical procedures that have to be performed on him, if needed?
Benjamin shows his emotions in different ways. Most of the time he is happy and excited but not always. Sometimes he stares into space. Sometimes he blinks as if there is something going on with his vision. When he is happy and excited he flails his arms and rocks back and forth in his seat. He lets out a noise that shows he is excited! But sometimes, you can see a look of frustration or anxiety on his face. He is obviously upset but I can tell why. The flailing becomes more intense and he bangs the back of his fist into his teeth. I’ll ask him, what’s wrong buddy? Why are you upset? Is he in some type of pain? What’s wrong? This is one type of frustration and a concern. Fortunately, for now, our times together are mostly positive.
I have been busy with things lately, but had been praying for JoAnn and her son Tommy concerning his cancer. I knew that Tommy had been moved to hospice care and I felt that I needed to get an update from Tommy’s mom. Trust me when I tell you that I wasn’t looking for a subject for my blog. I was just overdue in getting an update.
The news wasn’t good at all. Tommy’s cancer was progressing to the point that it is taking a toll on him. He is experiencing a lot of pain as a result of the cancer and possibly from an aneurysm as well. He is on constant pain medication that is being administered by the hospice staff. Probably, that is contributing to the fact that he is sleeping a lot. JoAnn can see that he is in pain and she has said that Tommy is saying “Mom” a lot. The source of much of the frustration is that Tommy can’t put into words what it is that he is feeling. JoAnn is not able to explain to Tommy what is causing his pain. All she and the hospice staff can do is to manage Tommy’s pain through meds and do their best to comfort him. I think that most people would agree that all this seems so unfair. That would include me!
I had cancer when I was 25 years old. Hodgkin’s disease. Even then, in the 80s, Hodgkin’s was very treatable if caught early as mine was. The testing and the surgery was worse than the treatment. I recovered of course and I’m here to tell you about it! The thing about my case is that it was a fair fight. I was fully aware of what was taking place in my body. I had a good attitude the whole time and that helped. If, however, it was found that the cancer was further along or had later progressed, I had the ability to prepare myself. Poor Tommy doesn’t even know what’s going on inside of him. He just knows that he is hurting. Imagine JoAnn’s frustration. She has some pleasant distractions in the form of grand kids and other family members but she always finds her thoughts drifting back to her “special buddy”. This is something that can be faced by any parent of a special needs child.
I don't know Tommy but know I would love him because, from talking to JoAnn, he is so much like Benjamin. In fact, I do love him because he is one of societies special individuals. Benjamin does so many cute and funny things that brightens my day. When it comes to girls that he finds attractive, he is just hilarious. JoAnn tells me that Tommy is exactly the same way. Even though they have never had the “Birds and the Bees” explained to them, the attraction is natural. Their thinking is something like “Hey, I like the way you look. Will you be my fwiend?”
So my point is that I hurt inside for Tommy, JoAnn, and their entire family. Although the details are not pleasant, I welcome hearing them. It helps me to know how to pray and to feel empathy. After all we could find ourselves in the same, or similar circumstances someday. I’m praying for you JoAnn! I am most certainly praying for Tommy!
Tommy I know that this is hard. Hang in there! This seems so unfair, I know. You can’t understand why you hurt so bad inside. You are asking for help and people are trying to do their best but they are only able to do so much. You were living a happy and mostly care free life, and then your world was turned upside down. Not fair!!
Great things await you buddy. You will all at once be taken to paradise and one day, on that great day, you will receive a new body. It will be perfect and free of any sickness or pain. You will shed no more tears and will experience joy that is unsearchable here on this planet. Right now, you do not know what is taking place, but then, you will understand completely. There will be no limit to what you are able to understand at that time. The things that you will see, are now beyond our comprehension.
You will meet so many wonderful people and your days together will never come to an end. It is quite possible that, after you’re all checked in, you will be found by a group of U.S. Navy SEALs. They will welcome you into their new brotherhood and will help you to find your way. All those little munchkins who battled, and the special people who went before you, will share with you their victory. This is not to mention people from your earthly family and all the great saints of old! What seemed to be so unfair will be completely swept away. You will understand completely what you were unable to know!
Tommy. You just have to get through this one thing. One very difficult thing. I have no doubt that losing you will create a hole in your family that will never be filled. Tommy, you can never be replaced. But they will remember that big smile of yours and all the funny cute things that you did. And one day, we will ALL be together! All this and knowing what you’re experiencing should serve to help ease the pain of your loss. People will be comforted.
These are some of the difficult things. I know, it’s easy for me to say. I’m praying JoAnn!
I love being Benjamin's Daddy…
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