The Greater Side of Jayme
As parents, we are quick to tell the humorous stories about the times when our children baffle us - no, they drive us CRAZY. Each story is a testimony to how patient we are in the face of absurdity. We love these stories on a variety of levels. We get to show how well we can tell a great, TRUE story... we are instantly elevated within the Fraternity of Parents to a higher level on the OH MY GOD, HOW DID WE LIVE THROUGH THIS Chapter (also known as the "Can Anyone Beat This One" Scale)... and, perhaps the best satisfaction comes from sharing that connection with our parents when we acknowledge that THE CURSE LIVES ON! Yes, the eternal curse that is uttered unto us when we do that utterly foolish deed, and our parents mutter, "May your child drive you as crazy as you do to us!!!"
Speaking as a child of 2 deceased parents I can assure you that that connection is every bit as real and satisfying STILL. Whenever our kids drive me to the point of spitting out the curse, my next action is always to smile and know that they are laughing - even if only in my heart.
So, when Jayme headed for Augusta, Georgia instead of Augusta, Maine, we had a classic moment that assured us the opportunity to jump way ahead of the class. We regularly about that that event. The contrast of Jayme's intelligence and his actions - this one time - created the 'perfect storm' of the ridiculous & the humorous.
As is so often the case, I have allowed that event to become a defining moment for Jayme. This is an injustice that I will correct now.
While I was in the hospital, several weeks ago, Robbi and I were faced with a series of circumstances that required us to make medical decisions about my treatment, which we were unprepared to make. We lacked knowledge and that affected our confidence. Not since the time when we heard the initial diagnosis of Scleroderma had we been so overwhelmed. As we tried to regroup, and educate ourselves, our doctors continued to confer and speculate... questioning and guessing, Robbi and I maintained the reins of control.
Then one day a group of doctors came into my room and speculated that they would like to perform a bone marrow biopsy on me. My red blood cell count had dropped very low (anemia)and a variety of possible causes existed. They wanted to get enough information to make a "reasonable" guess and then plan my treatment.
1) The infection in my lungs, (the reason I was hospitalized), was an unlikely cause, but could not yet be ruled out.
2) It is a moderate possibility that my bone marrow could have been damaged by the stem cell transplant. This damage may or may not be a treatable condition.
3) Most likely, a condition called "Anemia of Chronic Disease". This is a common peripheral condition that affects many with chronic conditions. Although not fully understood by the doctors, (hence - the ambiguous name), it is believed to be an affect of constant battles within the body as it tries to fight perceived infections.
While the doctors debated several points (including - did I have pneumonia... or not) my anxiety began to mount, at the prospect of have the biopsy. A combination of being very ill, weak, very short of breath, fatigued from poor sleep, and - NOT THE LEAST OF ALL - scared of the pain associated with a bone marrow biopsy. Remember me? I'm a big baby!
Throughout everything, Robbi, (remember her?), continued to keep the Rubenstein Clan running. Aside from the normal logistics, (home, work, kids, etc...), she was learning to understand and respond to new medical issues. More so, she had to do all this while coming to terms with the seriousness of my illness. All that and still be with me as my friend and partner. Robbi's strength is based in her intuitiveness. In this time she knew I was afraid. Knowing, too, that my fear was compounded by illness, she worked with me constantly to stay in touch with the facts and the things that were important to us - the 4 of US! How demanding is this? Some of us will only know because we love Robbi (or have a Robbi-like person in your life).
Now - fast forward...
After days of debating with the doctors about the need / value / and alternatives to doing the biopsy, it was determined that it had to be done. Even with the evidence presented and my agreement secured, (and the risk waivers signed), my anxiety grew. I had the assurances of the doctors that I could take mild sedatives. I will be lying on my side throughout the procedure. During this stage of my illness, lying on my side usually caused me to cough intensely. Anytime I was near to lying flat, I would go into coughing fits. This caused even the doctor to be concerned, for if I had one of these fits, the procedure would not be able to continue. Something that no one could assure was that I wouldn't feel any pain. In fact when I asked if I might yell in pain, the doctor told me that "some people do"... I was excited to hear this. While the procedure was expected to take about 15 minutes, some complications could extend it to 30-45 minutes. Now I'm jumping up and down with joy!
Then it's THE day. I was told that the procedure would take place in the early afternoon. I asked Robbi to come up to the hospital for 1pm. 1pm passes... 2pm... 4pm... 6pm... Robbi had gone down to the cafeteria several times to make calls. I'm having mild anxiety fits, all the while trying to maintain my composure.
The doctor arrives and there's a flurry of activity... Robbi commands that they dose me up again with Adavan, (or did she say QUAALUDE?). Robbi was a wreck, too. All along, these last few days, I had succeeded in winding her up well beyond the tolerance levels that anyone should endure. We all agreed that it was best for her to go downstairs. I think the doctor felt that she (the doctor) would be safer too. Robbi had the look on her face that said to the doctor, "If he feels any pain - so, too, will you!"
As soon as she left, I felt alone. Then just as the doctor was asking me to roll over onto my side - in walks Jayme. I cried... or at least I think I did. I know the sedatives were working because everything in my mind was distorted at that time. But, there was Jayme - and I wasn't afraid. Even the drugs hadn't achieved that. Jay's voice asking me, "Are you OK Dad?", brought me back into focus. I was able to respond and assure him that I was fine - and I BELIEVED IT TOO! Onward we moved... First, I'm on my side and there is no coughing. Jayme talks to both the doctor and I. He asks her what she will do at each stage, and then asks me if I understand the what is happening and how I'm doing. Next the doctor informs us that she will penetrate the bone that there is a possibility of pain... I feel the needle enter - no pain. Next up - she will remove a sample of bone marrow - this is usually the most painful part - NOTHING!!!!!!!!! It's done and I'm unscathed.
The whole time this is going on, I'm so happy that Jayme is there by my side. This is one of those defining moments in a family. Back in 1990 when I had the flu - and I thought I was going to die (Yes, I really did), I awoke from a deep sleep and feeling like shit, and found that Emily (then 4 years old) was sitting next to me holding my hand. That was a defining moment.
Our family is complete - and always has been.
Speaking as a child of 2 deceased parents I can assure you that that connection is every bit as real and satisfying STILL. Whenever our kids drive me to the point of spitting out the curse, my next action is always to smile and know that they are laughing - even if only in my heart.
So, when Jayme headed for Augusta, Georgia instead of Augusta, Maine, we had a classic moment that assured us the opportunity to jump way ahead of the class. We regularly about that that event. The contrast of Jayme's intelligence and his actions - this one time - created the 'perfect storm' of the ridiculous & the humorous.
As is so often the case, I have allowed that event to become a defining moment for Jayme. This is an injustice that I will correct now.
While I was in the hospital, several weeks ago, Robbi and I were faced with a series of circumstances that required us to make medical decisions about my treatment, which we were unprepared to make. We lacked knowledge and that affected our confidence. Not since the time when we heard the initial diagnosis of Scleroderma had we been so overwhelmed. As we tried to regroup, and educate ourselves, our doctors continued to confer and speculate... questioning and guessing, Robbi and I maintained the reins of control.
Then one day a group of doctors came into my room and speculated that they would like to perform a bone marrow biopsy on me. My red blood cell count had dropped very low (anemia)and a variety of possible causes existed. They wanted to get enough information to make a "reasonable" guess and then plan my treatment.
1) The infection in my lungs, (the reason I was hospitalized), was an unlikely cause, but could not yet be ruled out.
2) It is a moderate possibility that my bone marrow could have been damaged by the stem cell transplant. This damage may or may not be a treatable condition.
3) Most likely, a condition called "Anemia of Chronic Disease". This is a common peripheral condition that affects many with chronic conditions. Although not fully understood by the doctors, (hence - the ambiguous name), it is believed to be an affect of constant battles within the body as it tries to fight perceived infections.
While the doctors debated several points (including - did I have pneumonia... or not) my anxiety began to mount, at the prospect of have the biopsy. A combination of being very ill, weak, very short of breath, fatigued from poor sleep, and - NOT THE LEAST OF ALL - scared of the pain associated with a bone marrow biopsy. Remember me? I'm a big baby!
Throughout everything, Robbi, (remember her?), continued to keep the Rubenstein Clan running. Aside from the normal logistics, (home, work, kids, etc...), she was learning to understand and respond to new medical issues. More so, she had to do all this while coming to terms with the seriousness of my illness. All that and still be with me as my friend and partner. Robbi's strength is based in her intuitiveness. In this time she knew I was afraid. Knowing, too, that my fear was compounded by illness, she worked with me constantly to stay in touch with the facts and the things that were important to us - the 4 of US! How demanding is this? Some of us will only know because we love Robbi (or have a Robbi-like person in your life).
Now - fast forward...
After days of debating with the doctors about the need / value / and alternatives to doing the biopsy, it was determined that it had to be done. Even with the evidence presented and my agreement secured, (and the risk waivers signed), my anxiety grew. I had the assurances of the doctors that I could take mild sedatives. I will be lying on my side throughout the procedure. During this stage of my illness, lying on my side usually caused me to cough intensely. Anytime I was near to lying flat, I would go into coughing fits. This caused even the doctor to be concerned, for if I had one of these fits, the procedure would not be able to continue. Something that no one could assure was that I wouldn't feel any pain. In fact when I asked if I might yell in pain, the doctor told me that "some people do"... I was excited to hear this. While the procedure was expected to take about 15 minutes, some complications could extend it to 30-45 minutes. Now I'm jumping up and down with joy!
Then it's THE day. I was told that the procedure would take place in the early afternoon. I asked Robbi to come up to the hospital for 1pm. 1pm passes... 2pm... 4pm... 6pm... Robbi had gone down to the cafeteria several times to make calls. I'm having mild anxiety fits, all the while trying to maintain my composure.
The doctor arrives and there's a flurry of activity... Robbi commands that they dose me up again with Adavan, (or did she say QUAALUDE?). Robbi was a wreck, too. All along, these last few days, I had succeeded in winding her up well beyond the tolerance levels that anyone should endure. We all agreed that it was best for her to go downstairs. I think the doctor felt that she (the doctor) would be safer too. Robbi had the look on her face that said to the doctor, "If he feels any pain - so, too, will you!"
As soon as she left, I felt alone. Then just as the doctor was asking me to roll over onto my side - in walks Jayme. I cried... or at least I think I did. I know the sedatives were working because everything in my mind was distorted at that time. But, there was Jayme - and I wasn't afraid. Even the drugs hadn't achieved that. Jay's voice asking me, "Are you OK Dad?", brought me back into focus. I was able to respond and assure him that I was fine - and I BELIEVED IT TOO! Onward we moved... First, I'm on my side and there is no coughing. Jayme talks to both the doctor and I. He asks her what she will do at each stage, and then asks me if I understand the what is happening and how I'm doing. Next the doctor informs us that she will penetrate the bone that there is a possibility of pain... I feel the needle enter - no pain. Next up - she will remove a sample of bone marrow - this is usually the most painful part - NOTHING!!!!!!!!! It's done and I'm unscathed.
The whole time this is going on, I'm so happy that Jayme is there by my side. This is one of those defining moments in a family. Back in 1990 when I had the flu - and I thought I was going to die (Yes, I really did), I awoke from a deep sleep and feeling like shit, and found that Emily (then 4 years old) was sitting next to me holding my hand. That was a defining moment.
Our family is complete - and always has been.
posted by DesktopDavid at 4:51 PM
2 Comments:
aww i'm so cute! :)
jayme's alright, too, i guess :P
love you.
David,
You have touched on a parent's secret treasure, to feel your children near you, and to know you are loved.
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