Some days you can’t help but think, when the ax might fall. It’s times like these, when I am alone at home, and Dad has Dear Son, that I think about that. Times like this when I have time to paint my nails and not worry that I’ll ruin them if I’ll have to change a diaper. Times when I can do whatever I want, because there is no one to care for. You revel in the solitude, the peace and the quiet, but are careful not to enjoy it too much for fear it could be permanent. A little dose here or there, is a luxury, but permanent silence would be deafening.
I don’t suppose we give much thought to when someone might die but this isn’t a normal situation. We have a child who we know has been very, very sick and it’s only a matter of time before we lose the war, even if we’ve won the last battle. War changes you over time. You can no longer imagine time alone when you’ve been in every battle together. I’ve sat at his every bedside, wiped his little brow and doted over his every breath. When you are together at the hospital, you wait for the time when you can get out and go home. As you imagine the end of the battle, you can’t help but be swept away by thoughts of the war and when your real life will begin. Instead, your life is always a catch 22, where you eagerly await the time when you can begin your life, once the war is over, only to lose your best friend in the battle and have nothing to return home too.
It’s tough sometimes too, when people die, especially after a long battle. It doesn’t matter if you know them or not, just hearing their story on the news, whether it’s a celebrity, a politician or just a random local news story can evoke a reaction. The bigger the figure, the more you are affected. You can’t help but be affected because you know deep down, that your own war is nearing the end, and when someone else dies, you imagine your own battle and how it will end. And when they die, you feel like you’ve somehow dodged a bullet, because you know your end is coming. The tears you cry for them, often catch you by surprise, but your tears are never really for them, they are for you. They are yours because you realize just how close you are to the end of your own war. When that happens, you can’t help but hug and kiss your child, as if they had run out into the street and dodged a speeding car. It’s as if doing this somehow, prevents the end to your own war.
It’s strange too, when you’ve been in the trenches together. There is peace in the battle, knowing that you are together, even if only in the same room. That is where the battles are won, even if only briefly. It’s there that they tend to the wounds of the battle only to release him to find out that the battle isn’t really over, it’s just that the location has changed. You leave the battle as scarred as they do, only your wounds are inside. Whatever physical scars they have from the battle, have been internalized by you. It’s like watching a war in 3-D, somehow you feel you’ve been in it too.
During the war though, you learn to value the soul. The battle scars or bucket of parts is sometimes just that, a bucket of parts, some of which still work and others, not working so great. At some point, you stop worrying about the physical skills and what they could do and focus instead on the person within, for therein lies their soul. That is the person you know and love. It matters not what they can and can’t do because you love them regardless. Over the years, you cherish the child they were and the man that have become. War does that to people. You learn that the time you spent together was not just for him, but for you too. Their battle was your battle and you never look at any war the same way after that without being affected. As you get near the end of the war, you realize that the life you imagined after the battle, may never live up to the war.
And those times of solitude, can be a grim reminder of what is to come. I am always careful not to enjoy them too much. And when the time comes, when Dad brings Dear Son back home, and the front door opens and I see his shining face, I make sure to kiss and hug him really good. I am thankful for the opportunity to care for him once again. Once again, the battle rages on. It’s a good kind of battle though, because it means the war hasn’t ended. And as his mother, I'll do what I can to fight until the very end. After all, I have my little buddy to take care of…and that’s a very good thing.
Note: Dear Son is eighteen years old and suffers from intractable seizures, dystonia and severe mental retardation as a result of a random mutation of the ARX gene. In addition, he suffers from a progressive neurological disease.
I don’t suppose we give much thought to when someone might die but this isn’t a normal situation. We have a child who we know has been very, very sick and it’s only a matter of time before we lose the war, even if we’ve won the last battle. War changes you over time. You can no longer imagine time alone when you’ve been in every battle together. I’ve sat at his every bedside, wiped his little brow and doted over his every breath. When you are together at the hospital, you wait for the time when you can get out and go home. As you imagine the end of the battle, you can’t help but be swept away by thoughts of the war and when your real life will begin. Instead, your life is always a catch 22, where you eagerly await the time when you can begin your life, once the war is over, only to lose your best friend in the battle and have nothing to return home too.
It’s tough sometimes too, when people die, especially after a long battle. It doesn’t matter if you know them or not, just hearing their story on the news, whether it’s a celebrity, a politician or just a random local news story can evoke a reaction. The bigger the figure, the more you are affected. You can’t help but be affected because you know deep down, that your own war is nearing the end, and when someone else dies, you imagine your own battle and how it will end. And when they die, you feel like you’ve somehow dodged a bullet, because you know your end is coming. The tears you cry for them, often catch you by surprise, but your tears are never really for them, they are for you. They are yours because you realize just how close you are to the end of your own war. When that happens, you can’t help but hug and kiss your child, as if they had run out into the street and dodged a speeding car. It’s as if doing this somehow, prevents the end to your own war.
It’s strange too, when you’ve been in the trenches together. There is peace in the battle, knowing that you are together, even if only in the same room. That is where the battles are won, even if only briefly. It’s there that they tend to the wounds of the battle only to release him to find out that the battle isn’t really over, it’s just that the location has changed. You leave the battle as scarred as they do, only your wounds are inside. Whatever physical scars they have from the battle, have been internalized by you. It’s like watching a war in 3-D, somehow you feel you’ve been in it too.
During the war though, you learn to value the soul. The battle scars or bucket of parts is sometimes just that, a bucket of parts, some of which still work and others, not working so great. At some point, you stop worrying about the physical skills and what they could do and focus instead on the person within, for therein lies their soul. That is the person you know and love. It matters not what they can and can’t do because you love them regardless. Over the years, you cherish the child they were and the man that have become. War does that to people. You learn that the time you spent together was not just for him, but for you too. Their battle was your battle and you never look at any war the same way after that without being affected. As you get near the end of the war, you realize that the life you imagined after the battle, may never live up to the war.
And those times of solitude, can be a grim reminder of what is to come. I am always careful not to enjoy them too much. And when the time comes, when Dad brings Dear Son back home, and the front door opens and I see his shining face, I make sure to kiss and hug him really good. I am thankful for the opportunity to care for him once again. Once again, the battle rages on. It’s a good kind of battle though, because it means the war hasn’t ended. And as his mother, I'll do what I can to fight until the very end. After all, I have my little buddy to take care of…and that’s a very good thing.
Note: Dear Son is eighteen years old and suffers from intractable seizures, dystonia and severe mental retardation as a result of a random mutation of the ARX gene. In addition, he suffers from a progressive neurological disease.
2 comments:
I so understand. And the photos you have posted are very dear . Anne
I am always amazed at your strength and the depth of your love. You write so beautifully of your son and your battle.
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