Backward Glancing...
Posted Nov 11, 2010 10:58am
While sorting through all of my documents, I came across this, which was written during Phil's surgery as a journal entry. I did not share it at the time - this was for me. But looking back has been very educational, and I have decided to share it here today, from this vantage point - having arrived on the far side of this dark experience....commentary to follow!
September 7, 2010
I am in a sick, weird place, surreal to say the least. Here I sit on the third floor of Children’s Hospital, while somewhere in this monstrous structure, my little boy is in pieces on a table. Like a puppet. My little Pinocchio needs his back firmed up. So, we call Gepetto, and take him back to the shop for repairs. If I look at this any other way than objectively – (this is just a human body, it needs to be fixed, we fix it, etc.) - I will fall apart. Now, define THAT…well, it’s an excruciating pain in the center of my chest that radiates out like a hot flash out of control, and it HURTS! I can’t get away from it! All I can do is groan and ache, and try to move away from it, but I can only move INTO it…it’s all encompassing.
Food = Dirt and worms…shove them down my gullet. Living here in the moment…perched on the edge of reason, on the verge of tears. Where will this end? I want to collect my little Puppet at the end of the day, and take him home, zipping into his van, giving the “mustang shout out” every mile or so, or quizzing me on the build of every semi cab on the way home: Sleeper, or no sleeper?
I don’t know how this day will end. Will I see his eyes? Let him know that I am here? Or will they not extubate today? Will his little body say fuck it, and not rise to the challenge set before it of healing? I have to laugh at my strong, healthy, big boys at home whining about their bumps and bruises from playing football, and compare that to having your spine fused in the fashion that it will be for Phil. My head hurts. I want to throw up.
I have been to a lot of places in the past few months…just kind of guess work on what this day would be like. Here I am and it’s all still a mystery. They will call again soon and let me know what is going on in there…what stage of repair my little Pinocchio is at. How he is tolerating it?
1:10 pm: They are pretty much done with the hardware on one side of the back, and are starting to work on the other. They align all the hooks and screws and then when the back is aligned, then tighten it down. At this point, Phil is starting to bleed…his bones are oozing. They have given him two units of blood, and are recycling his own blood. He is and has been stable. This is supposed to be a good thing.
I am powerless here. Not the right word, actually. I am in the proverbial free fall. They could come and tell me that he bled to death, and there is nothing I could do about it. They could tell me they quit, and they are done with only half the hardware…I can do nothing about it. They can call me and tell me everything was well and good, and to come and see my boy…and there is still nothing I can do about it. I am only ½ step into this new life – this new dynamic of taking care of my son becoming the center of my universe, here – and I don’t know what to expect. Usually I’m pretty good at that…I can tell how something is going to roll…but not today. Not with this. This is a complete and total mystery. I need to connect with Phil. Where are you, my friend? I want you to know that everything is okay. Or I want YOU to tell me that everything is okay!!
I am having such a hard time being crushed and broken by joy….the joy of being Phil’s mom…the joy he brings…how much I love the little shit!!! But that joy is what is killing me softly today. I will write more later...
I wrote this during Phil’s surgery. Today is November 11, 2010. Two months and four days later. I just found this entry today, and did not wonder why I did not share it then. This has me in tears. This has me remembering the agony of that day and the lead up to it in a way that still hurts. I know there are other mothers who are going to go through this, and I find myself glad that I still feel this so intensely. I find that I don’t want to forget. I don’t want to be the one who forgets and tells her that it’s no big deal, just because our outcome was amazing. At the point above, the outcome is not the issue. It’s all about the moment. It’s a time of suspended animation. Nothing else matters. It IS the proverbial rock and a hard place, because you are trapped in it. All you can do is submit to it, and let it happen. Because it’s going to. Whatever the outcome – the experience of that day is all you have at that time.
I read with great reflection the last part about being crushed by joy, and realized how very descriptive that is – and how right on it is when you are the proud owner of a Duchenne boy. If going down this road had been a choice, we would have all declined. Oh, no thank you. What do we hope for every newborn family? Say it with me, “as long at it’s a healthy baby”…right? In other words, the worst thing that could happen to a person having a child is that the child is broken. Because if we qualify the “as long as…” in our text, we would have to say that nothing else – the gender, the size, the shape, the color – matters…as long as it’s healthy. The main thing you want is good health. The most important thing, then, is LIFE itself. We hope for a beating heart, and breathing lungs, and a healthy nervous system to communicate among the members. And I believe we are correct in this, too!
But this is not the case when we spin the baby roulette wheel. “Come on, healthy baby!” we say as the months roll by. Tick, tick, tick…the wheel slows, the labor pains set in and….(drum roll, please…) The harsh buzzer goes off and the audience gives a collective groan…”Oh…..no….you’ve got the special needs!” And we try not to cry in front of everyone.
Now fast-forward to a few years later. To now. To this person who you live with, and are coming to know quite intimately, because they are 100% dependent on you. Think of the laughs, the arguments, the conversations, the silliness….think of all of it, and consider trading it for someone else. I know…we all want to envision our boy “healthy” like they were “supposed” to be. We wanted to be buying them the gas powered ATV on their 13th birthday – not the Lego edition. But would we trade this life for another? Take some time to ponder this:
If you woke up in God’s office, and he’s giving you a re-do…would you take this boy? Knowing what you know now, and not knowing what the future will hold or how it will play out…would you take this boy?
I do not believe there is one among us who would turn and leave without her son. All the pain, all the heartache – but all the joy they bring just to see their face and hold their hand? There I stand…feeling the crushing pain of it all, mixed with the intense and wonderful love I have for him…smiling happy tears and crying sad tears simultaneously. Talk about emotional overload, total insanity meets totally sane. Total darkness which becomes total light. All that is life embraces all that is death – and LIFE wins.
I watched a video done by another DMD parent. Phil watched it with me. The parents are still in the depression stage of grief, and informed the audience of the rapaciousness of Duchenne, while showing us the struggles of their son. It was moving – I’ve been there. But Phil had questions. He saw a very sad parent. I am also that very sad parent. He asked a very pointed question. “Mom, do I make you that sad?”
How do you answer that? I know, I know…we hit them with the same logic that Christians hit sinners with…”We love you, we hate your sin.” Sounds even more pathetic when you are saying that to your son. “I love you, Phil…I hate the disease that is basically defining your life and killing you.” As much as we have tried NOT to define Phil by his disease – you cannot separate who you are from what you are. You cannot separate yourself from your reality. You are YOU – all of you, for good, for bad, for love, for fright….it’s all you. And I wanted to think long and hard about my answer.
He’s 12. That’s a tender, influential age in any kid. But one look at that face, questioning his affect on my happiness and somewhere from the center of my uncensored being the words, “Of course not!” come bubbling up. Because my soul knows the truth. My body and mind do not like the circumstances in which they find themselves or my son. But my heart and my spirit – they know what this is all about. They see this from the inside – from the top-side. They know the full truth of “Everything happens for a reason”, while it is completely lost on the brain. It’s only my physical part that cries in the night over all the strains this has put on my life, and all the struggles that are his to overcome. My spirit, on the other hand, is overjoyed to be spending a lifetime here with my friend Philip, regardless of his physical condition. We are pals and chums, slummin’ through life together, and helping each other out the best way we can, happy to be with one another. His body is just a little more wrecked than mine at this time. (Sometimes it feels like we’re aging together….”Oh…my aching back!” we say in unison when I’m lifting him…).
I let my spirit do the talking that day. “Phil, I LIKE you! You are far and away one of the coolest people I know. You make me very happy. Stuff happens that makes me sad – like your surgery. But I was sad because you were hurting. I want you to be happy. The fact that you are in a wheelchair, Champ, has nothing to do with how I feel about you as a person. Sometimes I will be sad about things that you can’t do, or the fact that you can’t walk and stuff, but then I think of how awesome it is just to hang out with you, and I’m happy again. It’s the ‘stuff’ that makes us sad, kid…it’s you that makes me happy.”
I’m not in denial about the facts of our life. I’m not blowing sunshine up his arse to make him feel good. It’s just the truth. I don’t see the need to burden a young boy with the heartaches of a mother in any situation, much less this one. Those are a fact of a grown-up life. What I want him to understand is that while our minds and bodies are stuck in the world of Duchenne, our hearts and spirits are having a grand time in the realm of relationship – and that’s all that truly matters. It may take him some time to grasp that – I’m just figuring it out now…
September 7, 2010
I am in a sick, weird place, surreal to say the least. Here I sit on the third floor of Children’s Hospital, while somewhere in this monstrous structure, my little boy is in pieces on a table. Like a puppet. My little Pinocchio needs his back firmed up. So, we call Gepetto, and take him back to the shop for repairs. If I look at this any other way than objectively – (this is just a human body, it needs to be fixed, we fix it, etc.) - I will fall apart. Now, define THAT…well, it’s an excruciating pain in the center of my chest that radiates out like a hot flash out of control, and it HURTS! I can’t get away from it! All I can do is groan and ache, and try to move away from it, but I can only move INTO it…it’s all encompassing.
Food = Dirt and worms…shove them down my gullet. Living here in the moment…perched on the edge of reason, on the verge of tears. Where will this end? I want to collect my little Puppet at the end of the day, and take him home, zipping into his van, giving the “mustang shout out” every mile or so, or quizzing me on the build of every semi cab on the way home: Sleeper, or no sleeper?
I don’t know how this day will end. Will I see his eyes? Let him know that I am here? Or will they not extubate today? Will his little body say fuck it, and not rise to the challenge set before it of healing? I have to laugh at my strong, healthy, big boys at home whining about their bumps and bruises from playing football, and compare that to having your spine fused in the fashion that it will be for Phil. My head hurts. I want to throw up.
I have been to a lot of places in the past few months…just kind of guess work on what this day would be like. Here I am and it’s all still a mystery. They will call again soon and let me know what is going on in there…what stage of repair my little Pinocchio is at. How he is tolerating it?
1:10 pm: They are pretty much done with the hardware on one side of the back, and are starting to work on the other. They align all the hooks and screws and then when the back is aligned, then tighten it down. At this point, Phil is starting to bleed…his bones are oozing. They have given him two units of blood, and are recycling his own blood. He is and has been stable. This is supposed to be a good thing.
I am powerless here. Not the right word, actually. I am in the proverbial free fall. They could come and tell me that he bled to death, and there is nothing I could do about it. They could tell me they quit, and they are done with only half the hardware…I can do nothing about it. They can call me and tell me everything was well and good, and to come and see my boy…and there is still nothing I can do about it. I am only ½ step into this new life – this new dynamic of taking care of my son becoming the center of my universe, here – and I don’t know what to expect. Usually I’m pretty good at that…I can tell how something is going to roll…but not today. Not with this. This is a complete and total mystery. I need to connect with Phil. Where are you, my friend? I want you to know that everything is okay. Or I want YOU to tell me that everything is okay!!
I am having such a hard time being crushed and broken by joy….the joy of being Phil’s mom…the joy he brings…how much I love the little shit!!! But that joy is what is killing me softly today. I will write more later...
I wrote this during Phil’s surgery. Today is November 11, 2010. Two months and four days later. I just found this entry today, and did not wonder why I did not share it then. This has me in tears. This has me remembering the agony of that day and the lead up to it in a way that still hurts. I know there are other mothers who are going to go through this, and I find myself glad that I still feel this so intensely. I find that I don’t want to forget. I don’t want to be the one who forgets and tells her that it’s no big deal, just because our outcome was amazing. At the point above, the outcome is not the issue. It’s all about the moment. It’s a time of suspended animation. Nothing else matters. It IS the proverbial rock and a hard place, because you are trapped in it. All you can do is submit to it, and let it happen. Because it’s going to. Whatever the outcome – the experience of that day is all you have at that time.
I read with great reflection the last part about being crushed by joy, and realized how very descriptive that is – and how right on it is when you are the proud owner of a Duchenne boy. If going down this road had been a choice, we would have all declined. Oh, no thank you. What do we hope for every newborn family? Say it with me, “as long at it’s a healthy baby”…right? In other words, the worst thing that could happen to a person having a child is that the child is broken. Because if we qualify the “as long as…” in our text, we would have to say that nothing else – the gender, the size, the shape, the color – matters…as long as it’s healthy. The main thing you want is good health. The most important thing, then, is LIFE itself. We hope for a beating heart, and breathing lungs, and a healthy nervous system to communicate among the members. And I believe we are correct in this, too!
But this is not the case when we spin the baby roulette wheel. “Come on, healthy baby!” we say as the months roll by. Tick, tick, tick…the wheel slows, the labor pains set in and….(drum roll, please…) The harsh buzzer goes off and the audience gives a collective groan…”Oh…..no….you’ve got the special needs!” And we try not to cry in front of everyone.
Now fast-forward to a few years later. To now. To this person who you live with, and are coming to know quite intimately, because they are 100% dependent on you. Think of the laughs, the arguments, the conversations, the silliness….think of all of it, and consider trading it for someone else. I know…we all want to envision our boy “healthy” like they were “supposed” to be. We wanted to be buying them the gas powered ATV on their 13th birthday – not the Lego edition. But would we trade this life for another? Take some time to ponder this:
If you woke up in God’s office, and he’s giving you a re-do…would you take this boy? Knowing what you know now, and not knowing what the future will hold or how it will play out…would you take this boy?
I do not believe there is one among us who would turn and leave without her son. All the pain, all the heartache – but all the joy they bring just to see their face and hold their hand? There I stand…feeling the crushing pain of it all, mixed with the intense and wonderful love I have for him…smiling happy tears and crying sad tears simultaneously. Talk about emotional overload, total insanity meets totally sane. Total darkness which becomes total light. All that is life embraces all that is death – and LIFE wins.
I watched a video done by another DMD parent. Phil watched it with me. The parents are still in the depression stage of grief, and informed the audience of the rapaciousness of Duchenne, while showing us the struggles of their son. It was moving – I’ve been there. But Phil had questions. He saw a very sad parent. I am also that very sad parent. He asked a very pointed question. “Mom, do I make you that sad?”
How do you answer that? I know, I know…we hit them with the same logic that Christians hit sinners with…”We love you, we hate your sin.” Sounds even more pathetic when you are saying that to your son. “I love you, Phil…I hate the disease that is basically defining your life and killing you.” As much as we have tried NOT to define Phil by his disease – you cannot separate who you are from what you are. You cannot separate yourself from your reality. You are YOU – all of you, for good, for bad, for love, for fright….it’s all you. And I wanted to think long and hard about my answer.
He’s 12. That’s a tender, influential age in any kid. But one look at that face, questioning his affect on my happiness and somewhere from the center of my uncensored being the words, “Of course not!” come bubbling up. Because my soul knows the truth. My body and mind do not like the circumstances in which they find themselves or my son. But my heart and my spirit – they know what this is all about. They see this from the inside – from the top-side. They know the full truth of “Everything happens for a reason”, while it is completely lost on the brain. It’s only my physical part that cries in the night over all the strains this has put on my life, and all the struggles that are his to overcome. My spirit, on the other hand, is overjoyed to be spending a lifetime here with my friend Philip, regardless of his physical condition. We are pals and chums, slummin’ through life together, and helping each other out the best way we can, happy to be with one another. His body is just a little more wrecked than mine at this time. (Sometimes it feels like we’re aging together….”Oh…my aching back!” we say in unison when I’m lifting him…).
I let my spirit do the talking that day. “Phil, I LIKE you! You are far and away one of the coolest people I know. You make me very happy. Stuff happens that makes me sad – like your surgery. But I was sad because you were hurting. I want you to be happy. The fact that you are in a wheelchair, Champ, has nothing to do with how I feel about you as a person. Sometimes I will be sad about things that you can’t do, or the fact that you can’t walk and stuff, but then I think of how awesome it is just to hang out with you, and I’m happy again. It’s the ‘stuff’ that makes us sad, kid…it’s you that makes me happy.”
I’m not in denial about the facts of our life. I’m not blowing sunshine up his arse to make him feel good. It’s just the truth. I don’t see the need to burden a young boy with the heartaches of a mother in any situation, much less this one. Those are a fact of a grown-up life. What I want him to understand is that while our minds and bodies are stuck in the world of Duchenne, our hearts and spirits are having a grand time in the realm of relationship – and that’s all that truly matters. It may take him some time to grasp that – I’m just figuring it out now…
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