You have seen my daughter, Sam, express her thoughts here on the blog. Well, today I am thinking about her as she attempts a new endeavor.
Sam came home last week and asked if she could run for student Senate at school. She was very excited as she explained that she feels like she is a good leader and would be good at voicing the needs of her class. Her idea was to represent things that everyone could enjoy, regardless of social stature. She wants a beautiful and all-inclusive school for everyone. We encouraged her to run and to win! I asked her what she wanted her speech to say, and helped her put the words together.
Last night came around and she had an emotional meltdown right before bed. She was afraid she was going to be the one person that wouldn't get elected. She was afraid that she wouldn't get any votes because she isn't one of the most popular girls. She was afraid of looking like a fool with nobody raising their hand for her.
I told her how I had been there many times. In fact, she is braver than I am because I wouldn't have had the guts to run for anything back during my school days. With years of experience I have come to realize that its more about what I believe in myself than what the masses believe. But I'm 49, not 10 and trying to find my way. It occurred to me that the advice I was giving her is true for so many things. Some of us face tremendous challenges where fear has a grip on us, some of us are caring for loved ones who are facing those challenges and fears, and some of us are trying to navigate even these types of small disasters. I said...
You know in your heart that you will be great. You know you want it for the right reasons. You go in there with your chin up. Stand there and give the best speech we've got and do it with your chin up. When the votes are counted, you keep your chin up, win or lose. If you win, be gracious to those who didn't. If you lose, be gracious to those who did, and keep your chin up. Its ok to be disappointed in the result, but don't be disappointed that you were brave enough to try. Only 3 students in the class dared to try, and that alone makes them all winners.
Of course I'm hoping that when I get home she is walking on clouds. It would be a great lesson to never sell herself short and to strive for goals that even she isn't sure she can reach. I'm obviously not wanting to go home to a pile of sobbing 10-year-old. That lesson will have to be to never give up, especially when you believe you can make a difference.
Either way, my heart goes out to her because I am so proud that she is the kind of person deep down that wants to stand up and be heard, especially for people that can't do it for themselves. In many ways, its a path of incredible satisfaction and disappointment. Let's see which one I'm going home to today...
Ahhh....the joys of being a Dad!
Be well and God bless. Tom
Wednesday, September 18, 2019
Tuesday, September 17, 2019
Finding Dr. Kofinas
Robin and I had one of those moments. We were talking about a random Tyler memory and we said those famous words "I wonder what ever became of that person?" In this case we were referring to Dr. Alexander Kofinas.
It was 1991, and we had just found out that Robin was type-1 diabetic AND pregnant. We were made to understand immediately that this was an unfortunate combination and that her sugars had to be controlled as quickly as possible.
I do not say this lightly....Robin did an amazing job getting her sugars under control right away and keeping them in check throughout the pregnancy. I can't imagine getting a diagnosis one day, going straight into the hospital shortly after, and training myself to live a whole different way of life overnight. She learned how to eat, how to give herself insulin, and how to test her sugars. She did this for her baby, and she did it without complaint. Tyler owes his life to her, and she should be regarded as a hero.
We were referred to Dr. Kofinas as a high-risk pregnancy. We had no idea what to expect, and being so young we were scared. Thankfully, Dr. Kofinas was the perfect doctor to go to. He talked to us as though Tyler were his only patient. He explained everything to us so we would know where we stood. He cared. The caring was what we needed the most.
Once we were referred out-of-state for Tyler's birth and initial surgery, we lost track of Dr. Kofinas. I suppose this happens a lot with these situations. We did think about him and talk about him occasionally when something relative to her pregnancy would come up in conversation, and it always ended in "I wonder where he ended up".
I took a moment and decided to google his name. I couldn't remember his first name, and honestly wasn't sure how to spell the last name either. After just a few failed attempts I found a Dr. Kofinas in Brooklyn, NY. Luckily his website actually posted his resume, and sure enough, there was our hospital in the early 1990's. It appears he has a practice with 2 locations in New York. And either he has a picture on his website from when he was 40, or he looks damn good for his age!
I took a moment and sent him an e-mail starting with..."you won't remember us...but" just so we could say hello. Even if he doesn't remember anything about us, it felt great to let him know that he made a difference in our lives when we really needed it. He was patient, compassionate, and supportive.
Many times on this blog, I talk about the importance of placing your trust in good people who are willing to stand beside you through the difficult times. There has been nothing else more valuable in our journey than having people around us who have loved and supported us. We didn't realize it then, but Dr. Kofinas was an early lesson in putting ourselves in the right hands.
Hopefully I get a reply from the good doctor and I can thank him for what he did for us all those years ago. Its important that we remember to do this where its warranted. After all, these doctors are as human as we are. They experience disappointments and heartbreak when they lose patients or can't help the way they would like to. Perhaps being reminded how much he helped us will strengthen him to continue to do the same for others.
So today we salute Dr. Kofinas....one of Tyler's heroes.
Be well and God bless. Tom
It was 1991, and we had just found out that Robin was type-1 diabetic AND pregnant. We were made to understand immediately that this was an unfortunate combination and that her sugars had to be controlled as quickly as possible.
I do not say this lightly....Robin did an amazing job getting her sugars under control right away and keeping them in check throughout the pregnancy. I can't imagine getting a diagnosis one day, going straight into the hospital shortly after, and training myself to live a whole different way of life overnight. She learned how to eat, how to give herself insulin, and how to test her sugars. She did this for her baby, and she did it without complaint. Tyler owes his life to her, and she should be regarded as a hero.
We were referred to Dr. Kofinas as a high-risk pregnancy. We had no idea what to expect, and being so young we were scared. Thankfully, Dr. Kofinas was the perfect doctor to go to. He talked to us as though Tyler were his only patient. He explained everything to us so we would know where we stood. He cared. The caring was what we needed the most.
Once we were referred out-of-state for Tyler's birth and initial surgery, we lost track of Dr. Kofinas. I suppose this happens a lot with these situations. We did think about him and talk about him occasionally when something relative to her pregnancy would come up in conversation, and it always ended in "I wonder where he ended up".
I took a moment and decided to google his name. I couldn't remember his first name, and honestly wasn't sure how to spell the last name either. After just a few failed attempts I found a Dr. Kofinas in Brooklyn, NY. Luckily his website actually posted his resume, and sure enough, there was our hospital in the early 1990's. It appears he has a practice with 2 locations in New York. And either he has a picture on his website from when he was 40, or he looks damn good for his age!
I took a moment and sent him an e-mail starting with..."you won't remember us...but" just so we could say hello. Even if he doesn't remember anything about us, it felt great to let him know that he made a difference in our lives when we really needed it. He was patient, compassionate, and supportive.
Many times on this blog, I talk about the importance of placing your trust in good people who are willing to stand beside you through the difficult times. There has been nothing else more valuable in our journey than having people around us who have loved and supported us. We didn't realize it then, but Dr. Kofinas was an early lesson in putting ourselves in the right hands.
Hopefully I get a reply from the good doctor and I can thank him for what he did for us all those years ago. Its important that we remember to do this where its warranted. After all, these doctors are as human as we are. They experience disappointments and heartbreak when they lose patients or can't help the way they would like to. Perhaps being reminded how much he helped us will strengthen him to continue to do the same for others.
So today we salute Dr. Kofinas....one of Tyler's heroes.
Be well and God bless. Tom
Wednesday, September 4, 2019
Tyler Update...Sort of
It appears that Tyler has come out of the weeds somewhat within the last 2 weeks. I would say we have gone from the fescue to the light rough at the moment. I will be receiving a more detailed update tonight, which I will post later. At church he still appeared to be unfocused but smiling and a little interactive.
The current frustration is trying to figure out WHY this has happened to him. That question alone is difficult enough, but an equally frustrating hurdle seems to be getting the right people to help him in the first place.
Something I heard from the beginning has turned out to be so true...the treatment options become much more limited the older that Tyler gets. The ironic thing about "aging out" of certain services, is that mentally Tyler hasn't aged at all. Even physically Tyler is nothing near a 27-year-old. And yet this is the criteria which often determines treatment. Just this year alone he has lost his Neurologist of 20 years because he is now an adult, he was denied an appointment with a psychiatric group because he was too old, he lost my insurance because he turned 27, and we are struggling to have a consultation with an out-of-state doctor because he lost my insurance at age 27 and only now has state funded medicaid.
Don't get me wrong, the folks I am talking to are normally WANTING to be helpful, but they entire system is just so broken. Facilities have to worry about getting re-reimbursed, whether they are doing something that would be frowned upon by insurances or medicaid, liability, limited numbers of doctors, and limited slots to schedule patients. Most of these mental health facilities are also unable to take new patients, or are scheduling months and months in advance.
The need for services is far exceeding the supply of resources. This is scary because both factors are going the wrong direction. The need is growing and the resources, which are already stressed to the point of breaking, are simply being stretched more.
Its easy to throw our hands up and say that the system is broken. Obviously this is true. But breaking it into little pieces and fixing them one at a time is how we can make some progress. There are too many pieces to lump it together and call it "the system". I will name just a few broken pieces:
The current frustration is trying to figure out WHY this has happened to him. That question alone is difficult enough, but an equally frustrating hurdle seems to be getting the right people to help him in the first place.
Something I heard from the beginning has turned out to be so true...the treatment options become much more limited the older that Tyler gets. The ironic thing about "aging out" of certain services, is that mentally Tyler hasn't aged at all. Even physically Tyler is nothing near a 27-year-old. And yet this is the criteria which often determines treatment. Just this year alone he has lost his Neurologist of 20 years because he is now an adult, he was denied an appointment with a psychiatric group because he was too old, he lost my insurance because he turned 27, and we are struggling to have a consultation with an out-of-state doctor because he lost my insurance at age 27 and only now has state funded medicaid.
Don't get me wrong, the folks I am talking to are normally WANTING to be helpful, but they entire system is just so broken. Facilities have to worry about getting re-reimbursed, whether they are doing something that would be frowned upon by insurances or medicaid, liability, limited numbers of doctors, and limited slots to schedule patients. Most of these mental health facilities are also unable to take new patients, or are scheduling months and months in advance.
The need for services is far exceeding the supply of resources. This is scary because both factors are going the wrong direction. The need is growing and the resources, which are already stressed to the point of breaking, are simply being stretched more.
Its easy to throw our hands up and say that the system is broken. Obviously this is true. But breaking it into little pieces and fixing them one at a time is how we can make some progress. There are too many pieces to lump it together and call it "the system". I will name just a few broken pieces:
- Not enough pay or training for caregivers
- Lack of state and federal funding
- Lack of facilities willing to address the needs of disabled adults
- Too many people allowed to abuse the current system
- Lack of education for those family members raising a disabled individual
There is no way on this or any other planet that we can fix all of these issues at once. BUT, I do believe that an initiative should be set to address one at a time.
How do you eat an elephant? One bite at a time.
Be well and God bless. Tom
Tuesday, September 3, 2019
When I Grow Up
We change so much as life goes on. Something that every relative asks every child is "what do you want to be when you grow up?". We immediately think about what profession we want to have...be it a doctor, lawyer, soldier, or whatever. Before we really understand what life is about we are trying to figure out our career for the next 30 years. Its no wonder that most people I know who went to college are not actually doing what they went to college for. A 17-year-old can barely get out of bed before 2pm but we think they will miraculously make the right career choice.
Perhaps we are asking the wrong question. Maybe the right question is...WHO do you want to be when you grow up? What kind of a person, friend, parent, citizen do you want to be? Its a question we should never stop asking ourselves.
When I was about 5 I said I wanted to be a garbage man (true story). When I waited for the school bus in the morning a garbage truck came by and the man would wave to me and smile. He seemed happy enough and it was really one of the few interactions I was exposed to at the time. At about age 10 I wanted to play first base for the Phillies. At about age 13 I wanted to be a professional bowler. Through my twenties I tried many different things but knew there was a better fit for me out there. In my 30's and 40's I wanted to be a Safety Manager. At nearly 50 I find myself still wondering what the next decade will bring.
But now I have enough time behind me to look back. The first question in my mind is not whether I would have made a great garbage man, or whether the Phillies would have won more rings had I played for them. I don't wonder how many records I might have set on the PBA tour, and I don't even think about the safety record of those I have worked for.
I think about the kind of dad I have been. I hope that when everything is said and done that I have loved my children the best way I knew how. Have I been a good friend to others? Have I been a good spouse and been willing to become better as time marches on? Have I left a positive impact somewhere on this earth? Have I been a good neighbor? And have I been true to myself? Those are the questions that I think about now.
It doesn't matter WHAT we are, it matters WHO we are. If we are compassionate, loyal, and loving to those around us, we have lived a good life.
When I look at pictures of my wife and children, I wonder what they see when they look back at me. I want for Tyler to see love, courage, and devotion. I want Samantha to see love, laughter, and protection. I want Robin to see love, compassion, and joy. These are the things I want to be when I grow up. For those are the things that truly last forever.
Be well and God bless. Tom
Perhaps we are asking the wrong question. Maybe the right question is...WHO do you want to be when you grow up? What kind of a person, friend, parent, citizen do you want to be? Its a question we should never stop asking ourselves.
When I was about 5 I said I wanted to be a garbage man (true story). When I waited for the school bus in the morning a garbage truck came by and the man would wave to me and smile. He seemed happy enough and it was really one of the few interactions I was exposed to at the time. At about age 10 I wanted to play first base for the Phillies. At about age 13 I wanted to be a professional bowler. Through my twenties I tried many different things but knew there was a better fit for me out there. In my 30's and 40's I wanted to be a Safety Manager. At nearly 50 I find myself still wondering what the next decade will bring.
But now I have enough time behind me to look back. The first question in my mind is not whether I would have made a great garbage man, or whether the Phillies would have won more rings had I played for them. I don't wonder how many records I might have set on the PBA tour, and I don't even think about the safety record of those I have worked for.
I think about the kind of dad I have been. I hope that when everything is said and done that I have loved my children the best way I knew how. Have I been a good friend to others? Have I been a good spouse and been willing to become better as time marches on? Have I left a positive impact somewhere on this earth? Have I been a good neighbor? And have I been true to myself? Those are the questions that I think about now.
It doesn't matter WHAT we are, it matters WHO we are. If we are compassionate, loyal, and loving to those around us, we have lived a good life.
When I look at pictures of my wife and children, I wonder what they see when they look back at me. I want for Tyler to see love, courage, and devotion. I want Samantha to see love, laughter, and protection. I want Robin to see love, compassion, and joy. These are the things I want to be when I grow up. For those are the things that truly last forever.
Be well and God bless. Tom
Wednesday, August 28, 2019
For Matty
I often have to travel between the two locations that I work for, which are about 10 minutes apart. Most days I try to spend 4 hours at one location, and 4 hours at the other. Since I am typically making the transition around lunchtime, I try to take my time and clear my mind. There are plenty of restaurants, a home improvement store, and a consignment shop that I can visit. Admittedly, one of my favorite sinful foods on earth is McDonald's french fries. I'm pretty sure they are fried with flakes of sunshine and rainbows because they make me so happy. So, once every week or so, I stop in for a hamburger and fries. This is where I met "Matty".
The first time I met Matty, I could tell that he had an MR diagnosis. But the first thing that really struck me was how HAPPY this young man was. The second thing that struck me was how the employees associated with Matty. They were happy to see him, and made him feel right at home. Matty marched right up to me and stuck out his hand. He introduced himself and asked for my name, which I obliged. We told me how he was looking forward to going to an amusement park that day. I asked him what his favorite ride was, but he couldn't answer as it seemed he couldn't process the question very well. All he knew was he was excited.
Over the course of the last few months, I've seen Matty a few times and said my hello. He is excited that I talk with him but I'm pretty certain he doesn't remember me much from the previous encounter. Something that doesn't change is his sweet disposition and his open heart. Joy flows from this young man.
Today I walked in for my fry fix, and there sat Matty with a lady I perceived to possibly be his Mom. I sat myself right next to their table so we could share lunch together. I shook Matty's hand and I could see him struggle to remember me. I re-introduced myself and the lady told him that we saw each other last at Burger King where I teased him for not being at McDonalds. This seemed to spark his memory a little. The lady explained that she is a caregiver from a local agency and she spends time during the day with Matty. As curious as I am about him, I know better than to ask many questions. We have to honor the legal and ethical rights Matty has to his privacy. Matty was thrilled to have a friend sit and talk to him. He was pointing out different colors, and complimented me on my fancy shirt (I was wearing a hawaiian shirt). He repeated the Burger King story back to me time and time again, and then he would laugh. I showed Matty a picture of Tyler and he was very inquisitive. He showed me the crew hat that the employees gave him.
I finished eating and told Matty I needed to head back to work. We looked at my empty tray and said "are you done?". I nodded and he stood up and said "let me take this for you". I protested that he didn't have to take my trash for me. The caregiver touched my arm and said "let him do that for you...you won't talk him out of it anyway". She was right. Just like with Tyler, once he set his mind to it, it was over. Matty took pride in taking care of that for me. Matty shook my hand twice more and we promised to see each other again. "At Burger King!" he said. And then he laughed and said "take care" as I headed to the door.
Such a simple experience that made such a profound effect on me. Here is a young man, full of joy and love for others. He can't remember the names of colors and yet he wanted to show me kindness by taking care of my tray. His heart only wants to connect with others in the same way. For this, he is the prime example of human decency and kindness. I hope that my interactions with him make him feel the same way. Any I look forward to seeing Matty again real soon.
Be well and God bless. Tom
The first time I met Matty, I could tell that he had an MR diagnosis. But the first thing that really struck me was how HAPPY this young man was. The second thing that struck me was how the employees associated with Matty. They were happy to see him, and made him feel right at home. Matty marched right up to me and stuck out his hand. He introduced himself and asked for my name, which I obliged. We told me how he was looking forward to going to an amusement park that day. I asked him what his favorite ride was, but he couldn't answer as it seemed he couldn't process the question very well. All he knew was he was excited.
Over the course of the last few months, I've seen Matty a few times and said my hello. He is excited that I talk with him but I'm pretty certain he doesn't remember me much from the previous encounter. Something that doesn't change is his sweet disposition and his open heart. Joy flows from this young man.
Today I walked in for my fry fix, and there sat Matty with a lady I perceived to possibly be his Mom. I sat myself right next to their table so we could share lunch together. I shook Matty's hand and I could see him struggle to remember me. I re-introduced myself and the lady told him that we saw each other last at Burger King where I teased him for not being at McDonalds. This seemed to spark his memory a little. The lady explained that she is a caregiver from a local agency and she spends time during the day with Matty. As curious as I am about him, I know better than to ask many questions. We have to honor the legal and ethical rights Matty has to his privacy. Matty was thrilled to have a friend sit and talk to him. He was pointing out different colors, and complimented me on my fancy shirt (I was wearing a hawaiian shirt). He repeated the Burger King story back to me time and time again, and then he would laugh. I showed Matty a picture of Tyler and he was very inquisitive. He showed me the crew hat that the employees gave him.
I finished eating and told Matty I needed to head back to work. We looked at my empty tray and said "are you done?". I nodded and he stood up and said "let me take this for you". I protested that he didn't have to take my trash for me. The caregiver touched my arm and said "let him do that for you...you won't talk him out of it anyway". She was right. Just like with Tyler, once he set his mind to it, it was over. Matty took pride in taking care of that for me. Matty shook my hand twice more and we promised to see each other again. "At Burger King!" he said. And then he laughed and said "take care" as I headed to the door.
Such a simple experience that made such a profound effect on me. Here is a young man, full of joy and love for others. He can't remember the names of colors and yet he wanted to show me kindness by taking care of my tray. His heart only wants to connect with others in the same way. For this, he is the prime example of human decency and kindness. I hope that my interactions with him make him feel the same way. Any I look forward to seeing Matty again real soon.
Be well and God bless. Tom
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