I haven't blogged since 2013. Maybe because I've been spending much of my time since then treading water and keeping my head just above water.
I'm about to keep it as real as you've ever seen. I'm doing this because I have a lot to get off my chest. Then you won't be hearing any more about it. I don't trust my feelings with people, but I've been prompted for months to write this, so I figure there must be a reason.
Simon turned 11 in June. We still keep in touch with many of his birthday month mates and it is always fun to see how they are growing and progressing. This year was different. Just weeks prior, one of Simon's very favorite doctor's suggested we fill out a POLST form and strongly encouraged a DNR. The reasons were very reasonable and very pragmatic; but I just couldn't have the conversation and that form sits in a pile on my bureau upside down and hasn't moved since. A birth month friend said how our kids would be planning college soon; I was just asked to plan my son's death. I smiled and expressed all those fun, "I can't believe how big they are" joys, but I was aching inside with every forced positive interaction. I'm supposed to celebrate these miraculous 11 years right? Even though we all know it has all been borrowed time, I'm not supposed to think about that, talk about it or acknowledge it. In fact most days, I think about it in a very matter a fact way. I make plans in my head for when the day comes without truly connecting to it.
Each time I see a Trisomy child pass, I offer my condolences and ache for the parents, yes; but really my main thought is, "I wonder when it's my turn. I wonder when these dozens of pictures I take daily and these fun videos are all I have left. Each night I smell Simon's cheek. It smells like infected mucous, but its his smell and its beautiful and perfect and I take in that smell every night I put him to bed and just hope I soaked in enough to last me if that night is his last night with me. Each night I shed quiet tears and pray to him and to my Heavenly Father to please not leave me tonight. Every single night a part of me prays this is not the last time I smell him and kiss him. Life changes in an instant and that is always how Simon does it. We have come close to losing him more times that I've expressed.
Shocking huh? I'm the resident make everyone feel good and uplift them person. I don't need pep talks, I was born a pep talk. I smile and hope others don't see the haunting in my eyes as every day I live my life with a film of worry and a whirlwind of thoughts, hoping I'm doing everything right everyday for him and my other boys. I don't think people realize how much I feel like I'm not allowed to have these feelings. I handle everything so well. I'm so happy, so positive; how could I literally be worried about my son's life every single day and you have no idea? Because I don't let you know. That's how I like it, but then I get irritated when you say you can relate when clearly you have no idea. It is an effort to just live daily life as normally as possible. All those activities we smile through took a lot of effort and logistics to plan and they are all sprinkled with fear and apprehension. I force myself from this cocoon every single day.
I recently was told how lucky I was to work and have that respite from Simon. What they didn't seem to realize is I work because I have to. While its good for me and Simon to have time away from each other, that is not the choice I prefer. We are lucky to have a great support system that allows me to work, but I am always a little afraid to be that far from him too. Currently, I am trying to coordinate a stool sample and how to get it to the lab from an hour away. A couple of months ago, coordinated daily bowel x-rays, it's always something. This makes me rely on a lot of people. I have to juggle multiple doctor's appointments a month, unless I choose to skip a month for sanity's sake. I have to battle insurance companies and medical facilities on my breaks and lunches. I have to get in touch with doctors to get orders for one worry or another. I'm always trying to stay one step ahead of whatever new unexplainable thing is going to change our lives forever. So yeah, I got it easy. Thanks for reminding me.
I don't need uplifting words. I don't need anyone telling me how they completely understand or how they or their friend has it so much worse. I just wanted to get it out there why I'm hard to talk to and why I'm lonely. I don't trust 500 of my closest friends with my emotions. Some can relate. Some think they can, but many can't and that makes me very difficult to talk to. I hold my emotions very close, so it gives the impression I don't have any. I think they are intimate and not for everyone.
So there you have it, and we won't speak of it again. If I seem guarded, it's because I am. If I seem angry, I am. Maybe, a little, this helped someone. Maybe, a little, you understand me more. Maybe, a little, you won't judge people and their trials based on how you would handle it, because you have no clue.
Monday, October 3, 2016
Friday, January 11, 2013
It's 2013! How Can That Be?!
Boy, I've been slacking at this blogging stuff. Around October our lives got really hectic again. Enjoy the mundane people, its a gift!
I took a week off in October for some routine doctors appointments for me and Simon. At Simon's we discovered that he needed surgery on his achilles because his feet were twisting down and in. I knew the one foot looked bad, but was surprised to find out the other one was in worse shape. This surgery involved wearing casts for 4 weeks. That part made me the most nervous. I thought he would be miserable. He wasn't, he adapted really quickly. We also found out his spine and hips aren't doing great, but don't need to be addressed immediately. I'll be going back and forth here so bear with me....
A couple of days later, I found out that I have an abnormal (looking), very large cyst on my ovary and a large fibroid. The cyst was suspect, but facing a surgery for Simon so soon, I just plain didn't want to deal with it. So my doctor agreed to take my blood for some tumor markers and if it came back normal she would let me wait 3 months. My blood was normal, whew! So I was able to wait, unless I had severe pain, then she told me to go to the emergency room....
Simon had surgery November 6th and it went beautifully. While we were waiting for him to come out of recovery, I started having pretty bad pain. I just prayed and decided, its not going to happen right now; I can't have this happen right now. Simon ended up doing so well, we were able to go home instead of staying over night and we all relaxed a lot better and my pain subsided.
Four weeks later Simon got his casts off. He thought the saw was funny and he was in a great mood. Once the air hit his legs, he lost it and cried and cried. Then he started vomiting. He still had to have his braces fitted so we hung out in Shriner's waiting room with me catching vomit with their free blankets. I finally put Thor the Dinosaur on for him and he calmed down. From that point on he had a cough. We figured he must have aspirated and just hoped it would work itself out. Then about a week later, he coughed, gagged and then started throwing up and didn't stop. I couldn't even keep a tsp of Pedialyte down him so we went to the emergency department for IV's. He was doing great and we brought him home. He seemed to be making progress with the help of Zofran, but he seemed like he was in pain. Dave started getting sick and I was covered to my elbows in puke. I ended up in pain the next morning when Simon woke up throwing up around 4am, Dave was feeling better so he had me lay down while he tended to Simon. A few hours later he woke me because Simon didn't look right. I took one look and knew it wasn't good, we decided he needed to go to the hospital. While we were getting changed he passed out and became unresponsive. We called 911. When they got there his glucose was 46 and by the time he got to the ambulance it was 41. His little body just couldn't regulate itself any longer and he needed some help. He was in the hospital 4 days. It took about another two weeks after that to have him on normal feeds and have his bowels working properly.
That was just before Christmas. We had a great Christmas, if not a hurried one, trying to get ANYthing ready. We were blessed with an anonymous package on our porch with a ham and cash. It was such a kind blessing and reminder that we are loved. Sometimes when you're caught up in challenges, you need that reminder that there is help and you don't have to do it alone. I hate to bug people with our issues.
The beginning of the year, I had my follow up ultra sound and it wasn't good news. My doctor called me herself the same day and let me know that she wanted an MRI. We have some plans in mind depending on what the MRI shows. I kind of had a bit of a hissy fit, because I just feel too tired to deal with anything else. But this type of issue comes wtih pain and other inconveniences and it needs to be addressed. I've come to peace with that now. As far as cancer, she won't know until she has the tissue in hand and she's been very honest; but the majority of these are begnin so I'm just taking it all one step at a time.
Just tons and tons of excitment in our home. After all the Simon stuff especially and being cooped up in the hospital I was aching to run. It was snowy and icy and I usually run inside in the winter, but I decided to go for it and I LOVED it. I couldn't believe how much I enjoyed it. Though I am having some pain associated with my girlie issues, I'm running as much as I can so I don't have to work so hard to a base after I recover from everything. I did have to give up my marathon and ragnar spots and I was so, so bummed. But it will give me the opportunity to address these things, get stronger and kick ass next year!
I took a week off in October for some routine doctors appointments for me and Simon. At Simon's we discovered that he needed surgery on his achilles because his feet were twisting down and in. I knew the one foot looked bad, but was surprised to find out the other one was in worse shape. This surgery involved wearing casts for 4 weeks. That part made me the most nervous. I thought he would be miserable. He wasn't, he adapted really quickly. We also found out his spine and hips aren't doing great, but don't need to be addressed immediately. I'll be going back and forth here so bear with me....
A couple of days later, I found out that I have an abnormal (looking), very large cyst on my ovary and a large fibroid. The cyst was suspect, but facing a surgery for Simon so soon, I just plain didn't want to deal with it. So my doctor agreed to take my blood for some tumor markers and if it came back normal she would let me wait 3 months. My blood was normal, whew! So I was able to wait, unless I had severe pain, then she told me to go to the emergency room....
Simon had surgery November 6th and it went beautifully. While we were waiting for him to come out of recovery, I started having pretty bad pain. I just prayed and decided, its not going to happen right now; I can't have this happen right now. Simon ended up doing so well, we were able to go home instead of staying over night and we all relaxed a lot better and my pain subsided.
Four weeks later Simon got his casts off. He thought the saw was funny and he was in a great mood. Once the air hit his legs, he lost it and cried and cried. Then he started vomiting. He still had to have his braces fitted so we hung out in Shriner's waiting room with me catching vomit with their free blankets. I finally put Thor the Dinosaur on for him and he calmed down. From that point on he had a cough. We figured he must have aspirated and just hoped it would work itself out. Then about a week later, he coughed, gagged and then started throwing up and didn't stop. I couldn't even keep a tsp of Pedialyte down him so we went to the emergency department for IV's. He was doing great and we brought him home. He seemed to be making progress with the help of Zofran, but he seemed like he was in pain. Dave started getting sick and I was covered to my elbows in puke. I ended up in pain the next morning when Simon woke up throwing up around 4am, Dave was feeling better so he had me lay down while he tended to Simon. A few hours later he woke me because Simon didn't look right. I took one look and knew it wasn't good, we decided he needed to go to the hospital. While we were getting changed he passed out and became unresponsive. We called 911. When they got there his glucose was 46 and by the time he got to the ambulance it was 41. His little body just couldn't regulate itself any longer and he needed some help. He was in the hospital 4 days. It took about another two weeks after that to have him on normal feeds and have his bowels working properly.
That was just before Christmas. We had a great Christmas, if not a hurried one, trying to get ANYthing ready. We were blessed with an anonymous package on our porch with a ham and cash. It was such a kind blessing and reminder that we are loved. Sometimes when you're caught up in challenges, you need that reminder that there is help and you don't have to do it alone. I hate to bug people with our issues.
The beginning of the year, I had my follow up ultra sound and it wasn't good news. My doctor called me herself the same day and let me know that she wanted an MRI. We have some plans in mind depending on what the MRI shows. I kind of had a bit of a hissy fit, because I just feel too tired to deal with anything else. But this type of issue comes wtih pain and other inconveniences and it needs to be addressed. I've come to peace with that now. As far as cancer, she won't know until she has the tissue in hand and she's been very honest; but the majority of these are begnin so I'm just taking it all one step at a time.
Just tons and tons of excitment in our home. After all the Simon stuff especially and being cooped up in the hospital I was aching to run. It was snowy and icy and I usually run inside in the winter, but I decided to go for it and I LOVED it. I couldn't believe how much I enjoyed it. Though I am having some pain associated with my girlie issues, I'm running as much as I can so I don't have to work so hard to a base after I recover from everything. I did have to give up my marathon and ragnar spots and I was so, so bummed. But it will give me the opportunity to address these things, get stronger and kick ass next year!
Friday, October 5, 2012
The Importance of Positive Self Talk
I've been really becoming aware of how I talk to myself. It ain't good. I can push myself forward, I can lift a weight that one more time, but I rarely tell myself; "well done!".
I don't think this is uncommon in women, and we need to do something about it. The majority of women I know are so aware of where they fall short, but so many couldn't tell you what their strengths are. Its sad; no really, really sad.
I just ran (or mostly ran) a half marathon last weekend. I didn't prepare as well as I should have. I was sick the whole week before. Dave got called in to work at 5am the morning of, so I had to scramble to get a boy to watch Simon. I was running late and lost. My ankle was acting up. I almost said forget it but just kept plugging forward the way I do.
I got to the starting point and was just so unexcited. Figured, well I'm here I might as well do it. I started running and it was going well, feeling good and at one point I realized I was making great time. I made it to mile 9 feeling pretty good, but then I became aware of some physical things including the tongue of my shoe sitting on a nerve and making my toes numb, so I re-adjusted my shoes and re-tied them and got moving again; but I totally lost focus and just never got it back, so for the next 4 miles I just kind of ran/walked and never got my mojo back (and I had very little mojo to begin with).
I crossed the finish line so mad and disappointed, I was crying. I was a jerk and I was bad tempered. Hayden and Sydney took Simon to Sydney's house and Dave and I went and got the hamburger I said I was going to have after the race, I said it since the day I signed up. No kind words were making me happy about the outcome of this race. Then we went to get Simon and he was very happily wiggling on the floor at Sydney's house. Then it hit me, just hit me.
I can walk, I can sit up without assistance, I can crawl. I can lift, I can feed myself......I have a strong healthy body that just completed a half marathon. Not as fast as I wanted, not the way I wanted; but I just finished 13.1 miles and selfishly forgot how grateful I am to have the ability to do it at all. AT ALL. There are so many people who physically cannot even attempt a walk to the bathroom. There are people without fully working bodies who work around their challenges and compete in whatever their interest is. I'm not going to be the fastest or the fittest, but I can be proud of me for getting up and going out and doing it. Sometimes that is the biggest accomplishment of all.
There was a time I probably would have said to heck with it. I didn't this time and I finished. But this is just one example of so many things that we don't give ourselves credit for.
I challenge anyone who reads this to take some time, a good 30min or more and tel yourself all the good things you are and do. After that, remind yourself daily of what you do well and keep pushing yourself forward with good positive self talk. A strong mind is 90% of creating a strong body. (made up statistic but you get the gist)
I don't think this is uncommon in women, and we need to do something about it. The majority of women I know are so aware of where they fall short, but so many couldn't tell you what their strengths are. Its sad; no really, really sad.
I just ran (or mostly ran) a half marathon last weekend. I didn't prepare as well as I should have. I was sick the whole week before. Dave got called in to work at 5am the morning of, so I had to scramble to get a boy to watch Simon. I was running late and lost. My ankle was acting up. I almost said forget it but just kept plugging forward the way I do.
I got to the starting point and was just so unexcited. Figured, well I'm here I might as well do it. I started running and it was going well, feeling good and at one point I realized I was making great time. I made it to mile 9 feeling pretty good, but then I became aware of some physical things including the tongue of my shoe sitting on a nerve and making my toes numb, so I re-adjusted my shoes and re-tied them and got moving again; but I totally lost focus and just never got it back, so for the next 4 miles I just kind of ran/walked and never got my mojo back (and I had very little mojo to begin with).
I crossed the finish line so mad and disappointed, I was crying. I was a jerk and I was bad tempered. Hayden and Sydney took Simon to Sydney's house and Dave and I went and got the hamburger I said I was going to have after the race, I said it since the day I signed up. No kind words were making me happy about the outcome of this race. Then we went to get Simon and he was very happily wiggling on the floor at Sydney's house. Then it hit me, just hit me.
I can walk, I can sit up without assistance, I can crawl. I can lift, I can feed myself......I have a strong healthy body that just completed a half marathon. Not as fast as I wanted, not the way I wanted; but I just finished 13.1 miles and selfishly forgot how grateful I am to have the ability to do it at all. AT ALL. There are so many people who physically cannot even attempt a walk to the bathroom. There are people without fully working bodies who work around their challenges and compete in whatever their interest is. I'm not going to be the fastest or the fittest, but I can be proud of me for getting up and going out and doing it. Sometimes that is the biggest accomplishment of all.
There was a time I probably would have said to heck with it. I didn't this time and I finished. But this is just one example of so many things that we don't give ourselves credit for.
I challenge anyone who reads this to take some time, a good 30min or more and tel yourself all the good things you are and do. After that, remind yourself daily of what you do well and keep pushing yourself forward with good positive self talk. A strong mind is 90% of creating a strong body. (made up statistic but you get the gist)
Wednesday, August 1, 2012
Why Do We Care What Other People Do?
We all do it. Come one, we all do it. We have strong opinions about other people's lives and choices. That is a big reason why reality shows are so popular. It gives us a place to spew all of our pent up righteous indignation. I like a good train wreck reality show and a good amount of gossip about a train wreck life. Generally speaking when we start to spew we go into detail about why we're better and how we wouldn't make the same choices as these losers.
So what if they are the biggest idiots around and make horrible choices? Really, so what? So what if they like things you don't like? So what if they like a movie or song or book you don't like. Why does it irritate some so much?
I have a couple of people in my life who really like to scrutinize and critique how I live my life. I've often wondered why I was so darned interesting. What confuses and really amuses me, is how angry they seem to become because of my choices, right down to my choice of sliced bread. I can't imagine all the wasted time that can be used trying to find happiness instead of looking around for one more thing to be angry about. The thing is, I'm often upset about it myself and do allow that power over me. Its not going to happen any more.
I'll admit, I've been an idiot. I've made bad choices. There are things I would have done differently. But those are my consequences to bear. It has made me vocal when I see others making a similar error in judgement. I've decided to stop it. I can share my experience if asked, but otherwise, unless someone really wants to hear my opinion or advice, I'll wait until they ask for it. These are all challenges we must face to become the people we become in our future. Everyday is step closer to a better you, even when you fall back a little.
Its made me more aware from being on the other end of it. I may possibly be the biggest idiot the world has seen. Why is that a bother to anyone unless you are depending on my supreme knowledge and wisdom? If you are depending on it then you probably learn quickly that I'm neither wise nor knowledgeable; so move on to someone who's opinion and life you respect and find value from.
I see people all around doing ugly things because they disagree with someone else's life choices. Speck v. log anyone? I know I could use lots of improvement, why would I want to waste the time I could be using to uplift myself and others around me I care about on people who I have no vested interest in and who are bad to me?
Be the change you want to see in the world? Then we all need to stop treating each other so crappy. Especially those that we claim to love and care about. I've challenged myself to not say anything negative. Unfortunately, so far, its made me realize how quiet I am when I'm not bitchin' about something. Sad. I intend to turn that around.
So what if they are the biggest idiots around and make horrible choices? Really, so what? So what if they like things you don't like? So what if they like a movie or song or book you don't like. Why does it irritate some so much?
I have a couple of people in my life who really like to scrutinize and critique how I live my life. I've often wondered why I was so darned interesting. What confuses and really amuses me, is how angry they seem to become because of my choices, right down to my choice of sliced bread. I can't imagine all the wasted time that can be used trying to find happiness instead of looking around for one more thing to be angry about. The thing is, I'm often upset about it myself and do allow that power over me. Its not going to happen any more.
I'll admit, I've been an idiot. I've made bad choices. There are things I would have done differently. But those are my consequences to bear. It has made me vocal when I see others making a similar error in judgement. I've decided to stop it. I can share my experience if asked, but otherwise, unless someone really wants to hear my opinion or advice, I'll wait until they ask for it. These are all challenges we must face to become the people we become in our future. Everyday is step closer to a better you, even when you fall back a little.
Its made me more aware from being on the other end of it. I may possibly be the biggest idiot the world has seen. Why is that a bother to anyone unless you are depending on my supreme knowledge and wisdom? If you are depending on it then you probably learn quickly that I'm neither wise nor knowledgeable; so move on to someone who's opinion and life you respect and find value from.
I see people all around doing ugly things because they disagree with someone else's life choices. Speck v. log anyone? I know I could use lots of improvement, why would I want to waste the time I could be using to uplift myself and others around me I care about on people who I have no vested interest in and who are bad to me?
Be the change you want to see in the world? Then we all need to stop treating each other so crappy. Especially those that we claim to love and care about. I've challenged myself to not say anything negative. Unfortunately, so far, its made me realize how quiet I am when I'm not bitchin' about something. Sad. I intend to turn that around.
Thursday, July 26, 2012
Negative Tests and Why They Cause Anxiety
I don't know if this a special needs mom thing or plain just a mom thing. When all the ques point to something is up, when you're on high alert and you're not sure exactly how to define what is causing this heightened state and the test you were sure was going to answer all of this comes back normal and then MORE anxiety creeps in? How is this possible? Shouldn't it calm you down that nothing is wrong. Shouldn't a more relaxed state replace the anxiety. Logic suggests that this is what should happen, but instead my eyes get wide, my heart races and I start staring at the boy from head to toe for hours trying to figure out what I'm missing.
Simon has very loose and stinky BM's. My poop obsession is a whole other blog post. He is having pretty extreme mood swings. He is having break through seizures, though very small in number he has been well controlled for months now (except the last time he had c.diff). He smells funny. He has bouts of what can only be pain and we've decided its stomach pain. He is startling easy and just a general sense of blase. I was certain the c.diff had returned since after his Flagyl he got another sinus infection and ended up on antibiotics again. But nope, there is none detected. So what's up?
I'm not a particularly hyper mom. Just ask Hayden who had a broken collar bone for three days before I suspected something was "really" wrong. Most complaints are met with, "give it a couple of days". Generally this is a good rule, if something is wrong it gives it time to really show itself, if its a passing thing you didn't waste time and money at the doctor. This, of course, has the exception of bleeding out your eyes and bones poking through skin.
The difference in Simon is that he doesn't speak English yet; he's working on his ASL but its still a version not taught in any class I've taken. He is completely dependent on our scrutiny to get proper treatment. It does make me a little nutty when he, in his own way, is trying to communicate that he's not right. Often, I don't figure it out and it passes and he's fine. Sometimes I have to just lie quietly with him until his spirit points me in the right direction or just plainly lets me know he needs immediate intervention. Mostly, we get it narrowed down and get the right test.
At this moment I'm on what I call high alert. I really feel like something is brewing. We have been fortunate to deal with mainly minor things the last year or so (at least in our community), so I will be watching but will restrain from panic. But oh how I so wish that a negative test made me feel more comfortable.
Simon has very loose and stinky BM's. My poop obsession is a whole other blog post. He is having pretty extreme mood swings. He is having break through seizures, though very small in number he has been well controlled for months now (except the last time he had c.diff). He smells funny. He has bouts of what can only be pain and we've decided its stomach pain. He is startling easy and just a general sense of blase. I was certain the c.diff had returned since after his Flagyl he got another sinus infection and ended up on antibiotics again. But nope, there is none detected. So what's up?
I'm not a particularly hyper mom. Just ask Hayden who had a broken collar bone for three days before I suspected something was "really" wrong. Most complaints are met with, "give it a couple of days". Generally this is a good rule, if something is wrong it gives it time to really show itself, if its a passing thing you didn't waste time and money at the doctor. This, of course, has the exception of bleeding out your eyes and bones poking through skin.
The difference in Simon is that he doesn't speak English yet; he's working on his ASL but its still a version not taught in any class I've taken. He is completely dependent on our scrutiny to get proper treatment. It does make me a little nutty when he, in his own way, is trying to communicate that he's not right. Often, I don't figure it out and it passes and he's fine. Sometimes I have to just lie quietly with him until his spirit points me in the right direction or just plainly lets me know he needs immediate intervention. Mostly, we get it narrowed down and get the right test.
At this moment I'm on what I call high alert. I really feel like something is brewing. We have been fortunate to deal with mainly minor things the last year or so (at least in our community), so I will be watching but will restrain from panic. But oh how I so wish that a negative test made me feel more comfortable.
Monday, July 23, 2012
Being Thankful
When you have a lot of responsibilities that demand your attention, it can be very difficult to be thankful for the easy things that don't demand your attention; because you can't see them through the fog of all that must be taken care of. I talked a lot about coming out of the fog and a lot of that for us has been to consciously be thankful for the here and now and to stop and appreciate the here and now for what it is.
I am part of the Deaf and Blind Parent Conference Committee this year and our meeting was in Saratoga Springs. I will admit that I wasn't really excited to drive an hour and a half away on a Saturday. We decided to make the most of it and in true Utah fashion plan a vacation get-away to Ikea after the meeting. Simon started fussing during the meeting and we thought he could use some quiet drive time so we decided to drive around Utah lake before heading to Ikea. What happened instead was us falling in love with Saratoga Springs and then discovering parts of Utah we had never been to. Our final stop was Santaquin Canyon. It was a heavenly place and a great reminder to not over shedule, go with the flow and really stop and admire the beauty all around us. Just take a break and soak in the beauty around us. I think we are becoming better people because of it. I know my anxiety level is diminishing.
I am a big believer in, "there is always something to be thankful for". Sometimes you have to look for it, but with gratitude comes a relief from the heaviness that a lack of appreciation cultivates. I read something attributed to Buddah, but I did not do the research to make sure. It said something to the affect of, "Not forgiving someone is like drinking poison and expecting the other person to die."; that was a eureka moment for me. I thought that can be interpreted into so many different scenarios of life and struggle. Let go of the things that weigh heavy on us, that will slowly kill us like a painful cancer; let it go. For our own sake. For our own happiness. For our own life.
Worry, pain, sadness; all of those things are a part of life, but what do they accomplish? I had a moment last week, after receiving some unexpected medical bills in the thousands, of pure panic and worry. I was bawling and pacing and not sure what we were going to do. Then I stopped myself and thought, "what can I do?". That is when I went into action. Action is power and control. Worry and panic is a tiring illness that sucks the life out of the ability to take action. I have had my moments where I just wanted to curl up and not deal. What I've found is taking those moments to slow down, appreciate what is around me has been so empowering and energizing; I just hate the time I wasted before. I choose life and energy!
I am part of the Deaf and Blind Parent Conference Committee this year and our meeting was in Saratoga Springs. I will admit that I wasn't really excited to drive an hour and a half away on a Saturday. We decided to make the most of it and in true Utah fashion plan a vacation get-away to Ikea after the meeting. Simon started fussing during the meeting and we thought he could use some quiet drive time so we decided to drive around Utah lake before heading to Ikea. What happened instead was us falling in love with Saratoga Springs and then discovering parts of Utah we had never been to. Our final stop was Santaquin Canyon. It was a heavenly place and a great reminder to not over shedule, go with the flow and really stop and admire the beauty all around us. Just take a break and soak in the beauty around us. I think we are becoming better people because of it. I know my anxiety level is diminishing.
I am a big believer in, "there is always something to be thankful for". Sometimes you have to look for it, but with gratitude comes a relief from the heaviness that a lack of appreciation cultivates. I read something attributed to Buddah, but I did not do the research to make sure. It said something to the affect of, "Not forgiving someone is like drinking poison and expecting the other person to die."; that was a eureka moment for me. I thought that can be interpreted into so many different scenarios of life and struggle. Let go of the things that weigh heavy on us, that will slowly kill us like a painful cancer; let it go. For our own sake. For our own happiness. For our own life.
Worry, pain, sadness; all of those things are a part of life, but what do they accomplish? I had a moment last week, after receiving some unexpected medical bills in the thousands, of pure panic and worry. I was bawling and pacing and not sure what we were going to do. Then I stopped myself and thought, "what can I do?". That is when I went into action. Action is power and control. Worry and panic is a tiring illness that sucks the life out of the ability to take action. I have had my moments where I just wanted to curl up and not deal. What I've found is taking those moments to slow down, appreciate what is around me has been so empowering and energizing; I just hate the time I wasted before. I choose life and energy!
Friday, July 13, 2012
Why I'm Against the ACA and any Government Controlled Healthcare.
No, I'm not a rich Republican; not by a long shot. No I don't hate everything President Obama does, though I do mostly disagree with his policies. I look for things to like, just can't find much. This is just from my perspective and what we've experienced as a family. No, Simon does not get Medicaid or disability or all those things people just assume you "get" when you're disabled. We pay for Simon's medical bills ourselves. I did leave work to care for him and ask for Medicaid and SSI. There was a time when I thought that was the thing that would make everything easier. There were many situations that made it so difficult to find a true answer to certain issues and sometimes the ramifications would be for us to pay back for these services when mistakes were made by the caseworkers and ended up doing more harm to our financial situation than good. Finally I was no longer comfortable trusting the clerks who represented these programs and decided to return to work. Luckily we have $5000 FSA for this one last year, which is already used up. We make decent money, have no savings and struggle to pay Simon's medical bills and our other bills. God help us if our expenses go up any more than they already have, we'll be one of the middle class people losing our home because of medical bills AFTER the reform. Though its a house that is falling apart right now and we can't afford to fix it, we still hope to stay in it as we call it home. We are still working on the changes WE can make to remedy this.
The healthcare bill did this to us middle class people it was supposed to help:
- Simon cannot be denied insurance, but they can charge us whatever they want
- No lifetime cap, okay, that one is good.
- Cut FSA to $2500 a year. We're screwed! (actually we will find a way to put some of our imaginary money aside to make up the difference)
- Medical Equipment has a new tax (we're screwed, most of Simon's monthly bills are DME related)
Issues that haven't been resolved in my mind yet:
- Our Nation's leaders are exempt
- Insurance companies were HAPPY and supported this bill
- No one seems to really know what is in this bill or how it will affect people in the long run
- It's based on John McCain's plan he spoke of during the election; I disagreed with him
I feel this bill was a win for big business, not for the people. I'm not against big business, but I am when its trying to be spun as a benefit to the people. In my opinion, the working class people got screwed again. We're so used to it now, we just bend over and figure out how to make it work.
If this bill works for you, great. If you have information that might help me feel better about what I listed above, great; share it. If you want to try to bully me or personally attack me because in your world that's how you get people to change their mind; don't bother, I couldn't care less what you think. I especially enjoy listening to angry wealthy people try to pretend to be one of us struggling families or pretend to understand what it is like to truly struggle financially when someone's life literally depends on it, tell me how good this is for me.
There is no doubt that reform has to be made. I want reform that empowers me and my choices, not makes me a dependent slave to government and insurance companies. Government control will never be on the table for me as I have experienced what happens when the government is in charge of my son's health care. It ain't pretty.
The healthcare bill did this to us middle class people it was supposed to help:
- Simon cannot be denied insurance, but they can charge us whatever they want
- No lifetime cap, okay, that one is good.
- Cut FSA to $2500 a year. We're screwed! (actually we will find a way to put some of our imaginary money aside to make up the difference)
- Medical Equipment has a new tax (we're screwed, most of Simon's monthly bills are DME related)
Issues that haven't been resolved in my mind yet:
- Our Nation's leaders are exempt
- Insurance companies were HAPPY and supported this bill
- No one seems to really know what is in this bill or how it will affect people in the long run
- It's based on John McCain's plan he spoke of during the election; I disagreed with him
I feel this bill was a win for big business, not for the people. I'm not against big business, but I am when its trying to be spun as a benefit to the people. In my opinion, the working class people got screwed again. We're so used to it now, we just bend over and figure out how to make it work.
If this bill works for you, great. If you have information that might help me feel better about what I listed above, great; share it. If you want to try to bully me or personally attack me because in your world that's how you get people to change their mind; don't bother, I couldn't care less what you think. I especially enjoy listening to angry wealthy people try to pretend to be one of us struggling families or pretend to understand what it is like to truly struggle financially when someone's life literally depends on it, tell me how good this is for me.
There is no doubt that reform has to be made. I want reform that empowers me and my choices, not makes me a dependent slave to government and insurance companies. Government control will never be on the table for me as I have experienced what happens when the government is in charge of my son's health care. It ain't pretty.
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