Jason's Dream
Distinguished member
- Joined
- Sep 5, 2010
- Messages
- 310
- Country
- US
- State
- As Usual
- City
- On My Own
Wow, .. Its soo hard to believe that 1 year ago today our lives were forever changed.
I can still remember that day like it just happened.
Going into that office, searching for answers, wanting to get help for Jason. I can still remember the colors of that room, how small that room felt, even the smell of that room. As Dr. Overman listened to Jason's progression of symptoms, as he had Jason flex his feet, his arms, .. sticking out his tongue.. walking back and forth down the small hallway. I can still remember him saying, "I think we are dealing with a motor neuron disease, but I want to do one more test to confirm what I think it is.", and breathing a sigh of relief, thinking we had dodged the bullet of ALS. Oh, how I was wrong. Watching him stick the needle in his extremeties, watching the screen, and hearing that unforgetable "popping" sound. And then ... what will forever be etched in my brain... Jason and I holding each other's hand as he announced his diagnosis. I will never forget hearing my sweetheart get those dreaded words. "You aren't looking at 15, 10, or even 5 years. You are looking at 6 months to 2 years. You have ALS or what is commonly known as Lou Gehrig's disease. This is a terminal illness and there is no cure for it. I will refer you to my mentor who only works with ALS patients..." My heart stopped and a sense of shock and unrealness seemed to set in by the time he got to "6 months to 2 years". I am losing my husband, my best friend, and love of my life. William is losing his father. Will this little one who we just found out that we are expecting even get to meet thier amazing Dadda? I'm going to be a widow. ...
Once the doctor finished, he said he'd leave us to take whatever time we needed and to come out when we were ready, and he left the room. The room started to spin, we were hugging, crying, as we knew that was the end of our dreams, our future together. Now what do we do? How do we deal with this? Who do we tell?
Time is precious, and escalated, as we were told within the next 6 months, do whatever we can while he still could.
I can still remember walking out to the parking garage. Jason was emotional, understandably so, but in excess with the disease. He wanted to tell his family. He knew it would be soo difficult to tell them, and with his emotions, he wanted to tell everyone all at once. But he wouldn't be able to get the words out, and I knew, I would be the one to tell them. To look at his Mom, his Sisters, his Grandpa, and tell them thier worst nightmare just came true. Jason wanted to do it, and wanted to do it the same night. He was still soo emotional, he couldn't be around, while I made the calls to his family to gather them at his Mom's house to give them the news. I can still remember talking to his Grandpa as Jason was walking around outside the car. The conversation was hard, as he wanted them all to be told at the same time. "Can you be at Pat's at 6pm?".. everyone knew we had this appointment... "Yes, but I want to know now!"... "I know, but Jason wants to tell everyone all at the same time, and so I am abiding by my husband's wishes"... "Okay, but was it good news?"... "We've got answers, Paul." That seemed to suffice his Grandpa and so we hung up. As we drove out of the big city, it was soo hard to not tear up. We were just given the worst news a couple could receive and now we had to drive the hour back to his Mom's house and let his family know. We tried humor, anything that would not allow us to think. Once we started to think, we were done, and the tears seemed to fall like flood gates.
I can still remember driving up to his Mom's house, parking on the street. One of his sister's husband was outside of the house, as he and his step dad didn't get along too well. I told him to get into the house, he started to argue, concerned with what his step dad would say, I told him that his wife will need him in there, and if there is something said, I'll deal with it. That seemed to suffice. I gathered everyone in the living room, and calmly told them the news we were just told. His sisters were in tears, his Grandpa so shakey, his Step-dad huddled in a small heap by the window, his Mom... calm, without a single tear. One of the hardest things I have had to do, and yet, I know I am still facing my greatest challenges still yet ahead.
So hard to believe how much a year can change.
I immediately quit my job at Walmart. We started to travel, but then we lost one of the twins and so I was put on bedrest. Having our little girl 6 weeks premature and all the struggles with her.
This time last year, Jason was walking, was still able to use his arms, his fingers, his wrists, his elbows... he was still able to talk and be able to be understood and talk with ease to some degree. He was still very independent, still helping around the house, washing dishes, doing the laundry, still playing trains with his son, his pride and joy. He still could dress himself, bathe himself, feed himself.
Today he can do none of that. He can't use both of his hands to bring them up to his face just to push the glasses up on his nose. His hands look mangled up, and his fingers are crinkled up in a crumbled mess that he can't seem to straighten or use. His ankles are turning inward and he can no longer bear weight on his legs and feet. Hardly no one seems to understand him anymore, and at times I am struggling to understand him. I now have to use a cough assist machine to help him mimic what a cough would do, so I can use a suction machine to suck out what we normally would do with ease with a simple cough. He has lost every human decent independent capability we seem to take for granted and he has been soo gracious in each new phase, never getting angry at how his body is betraying him. Oh I wish for something that would take his mind, so he would not know how horribly his body is betraying him. To be trapped inside, knowing all that he has lost, and yet, not even be able to communicate what he is thinking or feeling. My heart breaks for him so. My heart breaks for us in soo many ways.
Sorry, just feeling a bit melancholly, thinking back on a year with a multitude of great change.
I can still remember that day like it just happened.
Going into that office, searching for answers, wanting to get help for Jason. I can still remember the colors of that room, how small that room felt, even the smell of that room. As Dr. Overman listened to Jason's progression of symptoms, as he had Jason flex his feet, his arms, .. sticking out his tongue.. walking back and forth down the small hallway. I can still remember him saying, "I think we are dealing with a motor neuron disease, but I want to do one more test to confirm what I think it is.", and breathing a sigh of relief, thinking we had dodged the bullet of ALS. Oh, how I was wrong. Watching him stick the needle in his extremeties, watching the screen, and hearing that unforgetable "popping" sound. And then ... what will forever be etched in my brain... Jason and I holding each other's hand as he announced his diagnosis. I will never forget hearing my sweetheart get those dreaded words. "You aren't looking at 15, 10, or even 5 years. You are looking at 6 months to 2 years. You have ALS or what is commonly known as Lou Gehrig's disease. This is a terminal illness and there is no cure for it. I will refer you to my mentor who only works with ALS patients..." My heart stopped and a sense of shock and unrealness seemed to set in by the time he got to "6 months to 2 years". I am losing my husband, my best friend, and love of my life. William is losing his father. Will this little one who we just found out that we are expecting even get to meet thier amazing Dadda? I'm going to be a widow. ...
Once the doctor finished, he said he'd leave us to take whatever time we needed and to come out when we were ready, and he left the room. The room started to spin, we were hugging, crying, as we knew that was the end of our dreams, our future together. Now what do we do? How do we deal with this? Who do we tell?
Time is precious, and escalated, as we were told within the next 6 months, do whatever we can while he still could.
I can still remember walking out to the parking garage. Jason was emotional, understandably so, but in excess with the disease. He wanted to tell his family. He knew it would be soo difficult to tell them, and with his emotions, he wanted to tell everyone all at once. But he wouldn't be able to get the words out, and I knew, I would be the one to tell them. To look at his Mom, his Sisters, his Grandpa, and tell them thier worst nightmare just came true. Jason wanted to do it, and wanted to do it the same night. He was still soo emotional, he couldn't be around, while I made the calls to his family to gather them at his Mom's house to give them the news. I can still remember talking to his Grandpa as Jason was walking around outside the car. The conversation was hard, as he wanted them all to be told at the same time. "Can you be at Pat's at 6pm?".. everyone knew we had this appointment... "Yes, but I want to know now!"... "I know, but Jason wants to tell everyone all at the same time, and so I am abiding by my husband's wishes"... "Okay, but was it good news?"... "We've got answers, Paul." That seemed to suffice his Grandpa and so we hung up. As we drove out of the big city, it was soo hard to not tear up. We were just given the worst news a couple could receive and now we had to drive the hour back to his Mom's house and let his family know. We tried humor, anything that would not allow us to think. Once we started to think, we were done, and the tears seemed to fall like flood gates.
I can still remember driving up to his Mom's house, parking on the street. One of his sister's husband was outside of the house, as he and his step dad didn't get along too well. I told him to get into the house, he started to argue, concerned with what his step dad would say, I told him that his wife will need him in there, and if there is something said, I'll deal with it. That seemed to suffice. I gathered everyone in the living room, and calmly told them the news we were just told. His sisters were in tears, his Grandpa so shakey, his Step-dad huddled in a small heap by the window, his Mom... calm, without a single tear. One of the hardest things I have had to do, and yet, I know I am still facing my greatest challenges still yet ahead.
So hard to believe how much a year can change.
I immediately quit my job at Walmart. We started to travel, but then we lost one of the twins and so I was put on bedrest. Having our little girl 6 weeks premature and all the struggles with her.
This time last year, Jason was walking, was still able to use his arms, his fingers, his wrists, his elbows... he was still able to talk and be able to be understood and talk with ease to some degree. He was still very independent, still helping around the house, washing dishes, doing the laundry, still playing trains with his son, his pride and joy. He still could dress himself, bathe himself, feed himself.
Today he can do none of that. He can't use both of his hands to bring them up to his face just to push the glasses up on his nose. His hands look mangled up, and his fingers are crinkled up in a crumbled mess that he can't seem to straighten or use. His ankles are turning inward and he can no longer bear weight on his legs and feet. Hardly no one seems to understand him anymore, and at times I am struggling to understand him. I now have to use a cough assist machine to help him mimic what a cough would do, so I can use a suction machine to suck out what we normally would do with ease with a simple cough. He has lost every human decent independent capability we seem to take for granted and he has been soo gracious in each new phase, never getting angry at how his body is betraying him. Oh I wish for something that would take his mind, so he would not know how horribly his body is betraying him. To be trapped inside, knowing all that he has lost, and yet, not even be able to communicate what he is thinking or feeling. My heart breaks for him so. My heart breaks for us in soo many ways.
Sorry, just feeling a bit melancholly, thinking back on a year with a multitude of great change.
