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Strange language results from residing in different worlds. We had to learn very quickly upon Bryant's birth and our introduction into the Special Needs world and the Medical Arena. It was literally, a life or death situation. The fact that Bryant's very life depended on us did not ever leave my mind. We were, in fact, responsible for his every breath. I remember watching his chest rise and fall and being able to count it and know instantaneously if something was up. Even if the count was normal; I knew.
When you have someone who is totally dependent on you to live, it's a very complex emotional situation. Most of it gets buried deep within because if you stop and take the time to think about it, well that in itself can be devastating. I picture it like having death lurking around every corner. Certainly, at the very least, danger. Life-threatening stuff. If someone coughed or sneezed, well that could translate into a collapsed lung and perhaps a 10 day stint in the PICU on life support. A twitch? Could be a grand mal that would leap into status and cause him to seize for over 2 hours. That was brought on by chicken pox.
When Bryant was born, besides the obvious question - Is he going to live there also was, how is he going to live? Will he see his first birthday? Will he crawl? Walk? Talk? Eat? What would happen when he was done with school? Where would he live? With whom would he live? How could we make our home more accessible for him and with what funds? Would his funding be cut off? And the worst question ever faced by parents was the conundrum we faced and probably many special needs families face - What if we die first?
The only thing worse than having someone depend on you for every living moment is not having them. The threat of Death was around all the time. We were trying to outrun it the best we could. Certainly Bryant was on his own mission to be sure his life had meaning and was successful. Some people may erroneously believe that now we can "go on with our lives" and it must somehow be a relief or easier. But it's not. Even with the nightmarish conditions of 10 day hospital stays, countless operations and the threat that each day may be his last; this is not easier. This is a horror from which I ran and Bryant ran 20 valiant years. We all did, his siblings, his father, his extended family. We all raced. Fought the fine fight.
As I move through this awful journey without Bryant, I now have to face the new and profound set of challenges. Bryant isn't here physically anymore to take that away for another day or time. It's here now. People in the mourning process also have their own language and one question we ask each other is "how far out are you" meaning how long has it been since your child died. Just those words, are almost impossible to type because it makes it even more real. I answer with the time, as we all do, but the other day I realized, this isn't just from the time Bryant died, this is from the time he was born. The grieving process was put away on a shelf, occasionally looked at; but I was more afraid of confronting any of it because I just didn't want to ever believe that Bryant would die. I knew he could ... but we always seemed to out run it.
Even with the surgery, the sudden illnesses, watching horrific things happen (like IV's drilled into his shins) ~ well there was hope he would beat it, he would get better and we would go on. That's all I wanted. I never asked for more. I was content with Bryant's situation and we were a good team. And to have that ripped from me after all we went through drives my anger beyond sometimes what I think is humanly possible to bear.
So basically, I find myself still in a cross-road. I am trying to listen. I had to learn how to compartmentalize the issues and feelings and even to block some memories entirely. I would love to believe all this makes me stronger. But, in fact, it just makes me harder, my defenses always up, Emotionally withdrawn and really not to interested in exploring my 'feelings' because maybe it's just too painful to confront what is there. I've kept it at bay for so long and I really do not know any other way. Clearly it's not working. It worked when Bryant was alive because he was our spark. ~ so actually, one could say, I was dependent on Bryant to live....................... not really the other way around ~~~~~~~~~~~~~~~ =]
Sadness has its place an I am sure it always will. Looking back at everything that was thrown at Bryant and us, I try and pull forth the reasons we kept going. Was I really that strong? Nah. It's because Bryant had this incredible way of making us "live in the moment". That was the key then and I think now as well. Every moment spent grieving is moments that are taken away from living. True, part of life involves the reality of sadness, grief and reflection. I think perhaps the connotation is that it is bad somehow, or not healthy to be sad, explore your grief and reflect on that. And for me, this is where the "Aha" moment comes into play. When Bryant was sick, he was sick. That was the moment. The OH MY GOD is he going to live through this ????? And when he did, the relief and the knowledge, that yes, death could be around, but if you stop living, then you are already dead. Sounds corny and silly ~ but it's truth. I think the point is that yes, life does sometimes have to stop for whatever reason, but it also has to resume. So taking the time to confront grief should be just that ~ and then the get back up and live for the moment. I am tired of watching and looking and waiting for grief. The gloves are off.
If we had not followed that creed while Bryant was alive, I would have been too scared to move. I would have shuttered him at home and barricaded the doors. That would not have stopped anything, except living. I would never have done that to Bryant so now I wonder why I would do that to myself or my children or my spouse?
Does this mean the pity parties are over? I've had some revelation? Well that would be nice but it's not reality. The reality is that my life was forever changed the day Bryant arrived. The wheels that were put in motion could never, ever, ever be reversed. So to me, I will forever have over-whelming, painful, God-Awful grief lurking about ~ It is what it is. But also, I know, I will confront and face it. And on to the next moment. Back to life with Bryant and the Magical Journey he set us on.
I miss you Mr. B ~ xo xo Mommy
Bryant and Emily @ Disney - Grand Floridan
Strange language results from residing in different worlds. We had to learn very quickly upon Bryant's birth and our introduction into the Special Needs world and the Medical Arena. It was literally, a life or death situation. The fact that Bryant's very life depended on us did not ever leave my mind. We were, in fact, responsible for his every breath. I remember watching his chest rise and fall and being able to count it and know instantaneously if something was up. Even if the count was normal; I knew.
When you have someone who is totally dependent on you to live, it's a very complex emotional situation. Most of it gets buried deep within because if you stop and take the time to think about it, well that in itself can be devastating. I picture it like having death lurking around every corner. Certainly, at the very least, danger. Life-threatening stuff. If someone coughed or sneezed, well that could translate into a collapsed lung and perhaps a 10 day stint in the PICU on life support. A twitch? Could be a grand mal that would leap into status and cause him to seize for over 2 hours. That was brought on by chicken pox.
When Bryant was born, besides the obvious question - Is he going to live there also was, how is he going to live? Will he see his first birthday? Will he crawl? Walk? Talk? Eat? What would happen when he was done with school? Where would he live? With whom would he live? How could we make our home more accessible for him and with what funds? Would his funding be cut off? And the worst question ever faced by parents was the conundrum we faced and probably many special needs families face - What if we die first?
The only thing worse than having someone depend on you for every living moment is not having them. The threat of Death was around all the time. We were trying to outrun it the best we could. Certainly Bryant was on his own mission to be sure his life had meaning and was successful. Some people may erroneously believe that now we can "go on with our lives" and it must somehow be a relief or easier. But it's not. Even with the nightmarish conditions of 10 day hospital stays, countless operations and the threat that each day may be his last; this is not easier. This is a horror from which I ran and Bryant ran 20 valiant years. We all did, his siblings, his father, his extended family. We all raced. Fought the fine fight.
As I move through this awful journey without Bryant, I now have to face the new and profound set of challenges. Bryant isn't here physically anymore to take that away for another day or time. It's here now. People in the mourning process also have their own language and one question we ask each other is "how far out are you" meaning how long has it been since your child died. Just those words, are almost impossible to type because it makes it even more real. I answer with the time, as we all do, but the other day I realized, this isn't just from the time Bryant died, this is from the time he was born. The grieving process was put away on a shelf, occasionally looked at; but I was more afraid of confronting any of it because I just didn't want to ever believe that Bryant would die. I knew he could ... but we always seemed to out run it.
Even with the surgery, the sudden illnesses, watching horrific things happen (like IV's drilled into his shins) ~ well there was hope he would beat it, he would get better and we would go on. That's all I wanted. I never asked for more. I was content with Bryant's situation and we were a good team. And to have that ripped from me after all we went through drives my anger beyond sometimes what I think is humanly possible to bear.
So basically, I find myself still in a cross-road. I am trying to listen. I had to learn how to compartmentalize the issues and feelings and even to block some memories entirely. I would love to believe all this makes me stronger. But, in fact, it just makes me harder, my defenses always up, Emotionally withdrawn and really not to interested in exploring my 'feelings' because maybe it's just too painful to confront what is there. I've kept it at bay for so long and I really do not know any other way. Clearly it's not working. It worked when Bryant was alive because he was our spark. ~ so actually, one could say, I was dependent on Bryant to live....................... not really the other way around ~~~~~~~~~~~~~~~ =]
Sadness has its place an I am sure it always will. Looking back at everything that was thrown at Bryant and us, I try and pull forth the reasons we kept going. Was I really that strong? Nah. It's because Bryant had this incredible way of making us "live in the moment". That was the key then and I think now as well. Every moment spent grieving is moments that are taken away from living. True, part of life involves the reality of sadness, grief and reflection. I think perhaps the connotation is that it is bad somehow, or not healthy to be sad, explore your grief and reflect on that. And for me, this is where the "Aha" moment comes into play. When Bryant was sick, he was sick. That was the moment. The OH MY GOD is he going to live through this ????? And when he did, the relief and the knowledge, that yes, death could be around, but if you stop living, then you are already dead. Sounds corny and silly ~ but it's truth. I think the point is that yes, life does sometimes have to stop for whatever reason, but it also has to resume. So taking the time to confront grief should be just that ~ and then the get back up and live for the moment. I am tired of watching and looking and waiting for grief. The gloves are off.
If we had not followed that creed while Bryant was alive, I would have been too scared to move. I would have shuttered him at home and barricaded the doors. That would not have stopped anything, except living. I would never have done that to Bryant so now I wonder why I would do that to myself or my children or my spouse?
Does this mean the pity parties are over? I've had some revelation? Well that would be nice but it's not reality. The reality is that my life was forever changed the day Bryant arrived. The wheels that were put in motion could never, ever, ever be reversed. So to me, I will forever have over-whelming, painful, God-Awful grief lurking about ~ It is what it is. But also, I know, I will confront and face it. And on to the next moment. Back to life with Bryant and the Magical Journey he set us on.
I miss you Mr. B ~ xo xo Mommy
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