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Dealing with the fear
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<blockquote data-quote="slsh" data-source="post: 468797" data-attributes="member: 8"><p>TM - Many gentle hugs to you. </p><p></p><p>In my experience, it's an ongoing process. In Boo's first decade, I was blissfully ignorant of so much. When he started with- the seizures, I started researching not only epilepsy, but also prognosis for folks with- CP as severe as his. Statistically, it's very poor. I carry the fear in my heart 24/7. It could take only 1 status seizure, or 1 episode of pneumonia or sepsis or ... whatever. I feel the full weight of this daily because it falls on my shoulders to catch subtle signs that something is wrong with him since he cannot tell us when he's feeling poorly. And then it's on my shoulders again to ensure that medical professionals fully work him up if my radar is blaring. And *then* I have to try to maintain some objectivity and not let my terror of losing him override what is reasonable evaluation and treatment. I don't want to further disable him just because I would feel most comfortable with him hooked up to telemetry 24/7. <img src="data:image/gif;base64,R0lGODlhAQABAIAAAAAAAP///yH5BAEAAAAALAAAAAABAAEAAAIBRAA7" class="smilie smilie--sprite smilie--sprite2" alt=";)" title="Wink ;)" loading="lazy" data-shortname=";)" /></p><p></p><p>For me, it's something I've made as much peace with- as I'm going to - but it's taken a dozen or more years. Most days are okay, but then Boo is ridiculously healthy under the circumstances (knock wood). I've got a good team of doctors. caring for him. I've done everything in my power to ensure that he's healthy, and I've mapped out in my head every contingency I can for if/when things go bad. There is nothing more I can do. </p><p></p><p>I don't talk with- anyone about this, just as I really didn't talk about my worst fears when thank you was heavily into drugs and homeless. husband is a glass half full kind of guy, as well as someone who adamantly refuses to worry about things he has no control of. Pretty much the opposite of me, LOL. </p><p></p><p>I guess it boils down to there are no guarantees, for any of us. Bad stuff happens every minute of every day. Maybe statistically Duckie and Boo have a higher chance of something bad happening today, but.... statistics are meaningless in any single situation. I remember my euphoria when the NICU doctors told us that since the twins made it thru the first 24 hours, they had an 80% chance of survival. 80% - who wouldn't be happy with- those odds? When Ellen died 8 hours later, I was not only devastated, but I felt like I had been lied to. It changed my whole way of thinking - may be dark or morbid, but I figure we all have a 50-50 chance of getting thru the day. Either we do, or we don't. </p><p></p><p>You do everything in your power to ensure Duckie is safe, that every possible scenario is covered, and then you have to put your faith in God or fate or whatever. And you work daily on finding a balance with your fear - fear is good, it forces us to be proactive, but you have to find a way to not let it control your (and Duckie's) life on a daily basis. Some days it will, and that's okay I think, normal... you just have to not let it control *every* day.</p><p></p><p>Again, many many gentle hugs to you.</p><p></p><p>ETA: I don't know how you deal (in a mentally healthy way) with- the near-paralyzing fear when she's had one of her episodes. I'm the same way with- Boo. I pretty much just grit my teeth, get thru the crisis, make sure *he's* okay, and then it probably takes several more days of crying and ridiculous over-protectiveness of him to get back to my usual baseline. Fortunately he tolerates me.</p></blockquote><p></p>
[QUOTE="slsh, post: 468797, member: 8"] TM - Many gentle hugs to you. In my experience, it's an ongoing process. In Boo's first decade, I was blissfully ignorant of so much. When he started with- the seizures, I started researching not only epilepsy, but also prognosis for folks with- CP as severe as his. Statistically, it's very poor. I carry the fear in my heart 24/7. It could take only 1 status seizure, or 1 episode of pneumonia or sepsis or ... whatever. I feel the full weight of this daily because it falls on my shoulders to catch subtle signs that something is wrong with him since he cannot tell us when he's feeling poorly. And then it's on my shoulders again to ensure that medical professionals fully work him up if my radar is blaring. And *then* I have to try to maintain some objectivity and not let my terror of losing him override what is reasonable evaluation and treatment. I don't want to further disable him just because I would feel most comfortable with him hooked up to telemetry 24/7. :winking: For me, it's something I've made as much peace with- as I'm going to - but it's taken a dozen or more years. Most days are okay, but then Boo is ridiculously healthy under the circumstances (knock wood). I've got a good team of doctors. caring for him. I've done everything in my power to ensure that he's healthy, and I've mapped out in my head every contingency I can for if/when things go bad. There is nothing more I can do. I don't talk with- anyone about this, just as I really didn't talk about my worst fears when thank you was heavily into drugs and homeless. husband is a glass half full kind of guy, as well as someone who adamantly refuses to worry about things he has no control of. Pretty much the opposite of me, LOL. I guess it boils down to there are no guarantees, for any of us. Bad stuff happens every minute of every day. Maybe statistically Duckie and Boo have a higher chance of something bad happening today, but.... statistics are meaningless in any single situation. I remember my euphoria when the NICU doctors told us that since the twins made it thru the first 24 hours, they had an 80% chance of survival. 80% - who wouldn't be happy with- those odds? When Ellen died 8 hours later, I was not only devastated, but I felt like I had been lied to. It changed my whole way of thinking - may be dark or morbid, but I figure we all have a 50-50 chance of getting thru the day. Either we do, or we don't. You do everything in your power to ensure Duckie is safe, that every possible scenario is covered, and then you have to put your faith in God or fate or whatever. And you work daily on finding a balance with your fear - fear is good, it forces us to be proactive, but you have to find a way to not let it control your (and Duckie's) life on a daily basis. Some days it will, and that's okay I think, normal... you just have to not let it control *every* day. Again, many many gentle hugs to you. ETA: I don't know how you deal (in a mentally healthy way) with- the near-paralyzing fear when she's had one of her episodes. I'm the same way with- Boo. I pretty much just grit my teeth, get thru the crisis, make sure *he's* okay, and then it probably takes several more days of crying and ridiculous over-protectiveness of him to get back to my usual baseline. Fortunately he tolerates me. [/QUOTE]
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