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.
Thursday, July 26, 2012
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.
Wednesday, July 11, 2012
Yes, I ran the FULL Marathon
Its so funny when people talk to me about the marathon. I mention my time (in the 6 hour area) and they get this horrified look, and I think wow its not THAT bad. Then they say "oh, you ran the FULL marathon?" I then assure them that yes it was the full marathon.
Its funny, because to look at me, you would probably not even guess that I ran; unless you looked at my legs. The legs don't lie LOL. So when people look at me incredulous that I ran a full marathon it makes me smirk a little. Its like a hidden super hero skill that no one saw coming. Not that it really comes handy in fighting crime, unless I want to be a COPS camera man; because lets face it, they run faster than most of the cops. Truly though there are quite a few fatty marathoners. Not competitive marathoners, but marathoners that can knock out 26.2 miles on a fairly regular basis. So don't judge; we can do more than YOU can, so suck it.
I do run. I'm a fairly slow runner. I'm a pretty "sturdy" woman, but pretty fit and active; it just doesn't really look like it. I am working on somethings to see if it changes; like swimming, lifting and not just running. Sometimes the problem with endurance running is your body gets pretty used to it and doesn't really make a lot of changes to the rest of your body. Its an age old question that I've read quite a bit about lately; "why do people GAIN weight while training for a marathon?" It really seems like a paradox. But the physiology really is unmistakable. So now that I have the marathon under my belt, I am changing it up quite a bit and paying a lot more attention to my eating habits. They are pretty bad for someone who thought they were pretty good.
Swimming, I am beginning to enjoy more. I love to swim, as in play and splash and what not. True stroke swimming is difficult and things just get in the way. I've had to overcome the embarrassment of being a sturdy woman in my bathing suit, goggles and swim cap. I feel as if I'm trying to fool people into thinking I'm an athlete and have it written all over my body otherwise. The thing is, I really have to start believing I'm an athlete and treating myself like an athlete so I can truly become an athlete. Thinking is essential to reaching any goal.
So as my journey progresses and I run my measly little half in September : ) hopefully I start looking like the awesome superhero that I feel like. I already have a cape hidden in my closet, now I just need a name.
Its funny, because to look at me, you would probably not even guess that I ran; unless you looked at my legs. The legs don't lie LOL. So when people look at me incredulous that I ran a full marathon it makes me smirk a little. Its like a hidden super hero skill that no one saw coming. Not that it really comes handy in fighting crime, unless I want to be a COPS camera man; because lets face it, they run faster than most of the cops. Truly though there are quite a few fatty marathoners. Not competitive marathoners, but marathoners that can knock out 26.2 miles on a fairly regular basis. So don't judge; we can do more than YOU can, so suck it.
I do run. I'm a fairly slow runner. I'm a pretty "sturdy" woman, but pretty fit and active; it just doesn't really look like it. I am working on somethings to see if it changes; like swimming, lifting and not just running. Sometimes the problem with endurance running is your body gets pretty used to it and doesn't really make a lot of changes to the rest of your body. Its an age old question that I've read quite a bit about lately; "why do people GAIN weight while training for a marathon?" It really seems like a paradox. But the physiology really is unmistakable. So now that I have the marathon under my belt, I am changing it up quite a bit and paying a lot more attention to my eating habits. They are pretty bad for someone who thought they were pretty good.
Swimming, I am beginning to enjoy more. I love to swim, as in play and splash and what not. True stroke swimming is difficult and things just get in the way. I've had to overcome the embarrassment of being a sturdy woman in my bathing suit, goggles and swim cap. I feel as if I'm trying to fool people into thinking I'm an athlete and have it written all over my body otherwise. The thing is, I really have to start believing I'm an athlete and treating myself like an athlete so I can truly become an athlete. Thinking is essential to reaching any goal.
So as my journey progresses and I run my measly little half in September : ) hopefully I start looking like the awesome superhero that I feel like. I already have a cape hidden in my closet, now I just need a name.
Monday, July 9, 2012
Out of the Fog
I want to start this post by stating I love my kids. Simon is everything, I never knew, I always wanted. All kids bring heartache of some kind. Whether it be someone being mean to them at school or having to get a painful shot or other treatment. Simon just started out his life with us hopelessly watching as others tried to save him. I gave birth with a smile and within hours had a multitude of tears and fears I had not experienced with my other boys. Heck except for one broken bone, they had never had anything majorly physical happen to them. I remember feeling myself disconnect from Simon and having to consciously remind myself that it was okay to love him. I didn't realize really at the time that the fog began then.
Simon and Dave were pretty much whisked away within hours of his birth. I got to say one final goodbye before he left for PCMC. Luckily I had so much confidence for my legend in the sky that either the fog or the confidence made it not so bad. As long as no one asked me how I was, I was fine. I remember a social worker coming to my room and being so confused as to why she was there. I would just say I'm fine. My tears right now as I write this tell me maybe I never really was.....
Simon came home a week later, which in our community is absolutely fabulous. We were afraid to care for him on our own and at the time there was no clue as to how complex he would end up being. We went upstairs and stayed. We hardly ever left our room. Simon and his stuff was there. He and that room became our world. We thought this was temporary, not a way of life for the next 5-7 years.
Simon went through a lot. Our family went through a lot. Our boys had to give up a lot. There is a lot of negative things I could trudge up and be resentful of. We still make sacrifices for the benefit of Simon, because he is our family, he is his brothers' brother. One for all and all for one. Partnership in a family is so important and not one member of our family has ever let the other down. Even little boys of 10 & 12 selflessly sacrificed with some consequence. Life happens to everyone. Everyone learns something and everyone has some kind of trial.
Slowly but surely, we are discovering that we can live separately a little. School helped and the bills that caused me to need to return to work helped that. It was a good thing. It got me out of the house and not staring at my kid waiting for the next thing to go wrong.
I'm not going to pretend that this whole experience has been rosebushes and rainbows, but I truly believe a choice is given in what side you concentrate on. It can be hard or not so hard; its our choice and we made it. We prefer not so hard. So how do you do that? We like to laugh, we laugh all the time. We laugh about things we shouldn't laugh about. We don't care, we want to laugh. We want to smile, we want to find the thing to laugh and smile about. We have given up the things out of our control and taken full control of the things we can.
This has not been an easy choice. Sometimes I really want people to know that despite my cheery attitude, it is hard. It does bring tears to my eyes. I do struggle. I do get overwhelmed. I do get sad. I do get TIRED. But I choose not to stay there. I choose to live. I probably didn't fully make this choice until not that long ago. This has been a conscious, goal setting choice. We have made changes in our lives to ensure that we are living and doing. It has been a one foot in front of the other, walking out of the fog. Trying to fully shake the fog. I don't know if its possible but I will not succumb to being bogged down by it. Then where do I end up? Sitting upstairs with a frown doing nothing about anything. That is no way to live. That is getting by.
Simon and Dave were pretty much whisked away within hours of his birth. I got to say one final goodbye before he left for PCMC. Luckily I had so much confidence for my legend in the sky that either the fog or the confidence made it not so bad. As long as no one asked me how I was, I was fine. I remember a social worker coming to my room and being so confused as to why she was there. I would just say I'm fine. My tears right now as I write this tell me maybe I never really was.....
Simon came home a week later, which in our community is absolutely fabulous. We were afraid to care for him on our own and at the time there was no clue as to how complex he would end up being. We went upstairs and stayed. We hardly ever left our room. Simon and his stuff was there. He and that room became our world. We thought this was temporary, not a way of life for the next 5-7 years.
Simon went through a lot. Our family went through a lot. Our boys had to give up a lot. There is a lot of negative things I could trudge up and be resentful of. We still make sacrifices for the benefit of Simon, because he is our family, he is his brothers' brother. One for all and all for one. Partnership in a family is so important and not one member of our family has ever let the other down. Even little boys of 10 & 12 selflessly sacrificed with some consequence. Life happens to everyone. Everyone learns something and everyone has some kind of trial.
Slowly but surely, we are discovering that we can live separately a little. School helped and the bills that caused me to need to return to work helped that. It was a good thing. It got me out of the house and not staring at my kid waiting for the next thing to go wrong.
I'm not going to pretend that this whole experience has been rosebushes and rainbows, but I truly believe a choice is given in what side you concentrate on. It can be hard or not so hard; its our choice and we made it. We prefer not so hard. So how do you do that? We like to laugh, we laugh all the time. We laugh about things we shouldn't laugh about. We don't care, we want to laugh. We want to smile, we want to find the thing to laugh and smile about. We have given up the things out of our control and taken full control of the things we can.
This has not been an easy choice. Sometimes I really want people to know that despite my cheery attitude, it is hard. It does bring tears to my eyes. I do struggle. I do get overwhelmed. I do get sad. I do get TIRED. But I choose not to stay there. I choose to live. I probably didn't fully make this choice until not that long ago. This has been a conscious, goal setting choice. We have made changes in our lives to ensure that we are living and doing. It has been a one foot in front of the other, walking out of the fog. Trying to fully shake the fog. I don't know if its possible but I will not succumb to being bogged down by it. Then where do I end up? Sitting upstairs with a frown doing nothing about anything. That is no way to live. That is getting by.
Thursday, July 5, 2012
Chromo Kids are Human Too!
If you're a doctor reading this and think my kid and any kid like him shouldn't be allowed to live.....keep reading.
With many kids with chromosomal abnormalities, we can anticipate that there will be some health issues. With children without chromosomal abnormalities, we can anticipate that there will be some health issues. How do we decide which one is worthy to live or have their life mean something? I read today on a community board for SN children that a mother with a new chromosomal child whois having desating spells while refluxing was advised to stop tube feeds and let the child slip away. Starving to death is not a painless death. I think asking a parent to allow their child to starve would go against EVERYTHING being a parent is. I think being a medical professional who has taken an oath to do no harm; it would be going against everything they believe and took an oath to do. So how is it, in modern society acceptable to think of these children as no more than an inhuman object deserving of starving to death? How does that happen. How do you see this person and because they have chromosomes you don't understand yet in every other way is a human child, consider them an object worthy of death because they just aren't worth the hassel. Because they won't have the quality of life that others have. How so? I know plenty of worthless, non-contributing, normal chromomosomed people who do nothing but suck from society, yet their life is more valuable, why?
I know I wouldn't be as passionate about this if it wasn't for Simon. THANK YOU GOD for his and your lessons. Simon has had challenges. Simon has been near death many times. We did all we could do to help him fight his fight to live. I would never deny him anything a typical child would need to survive under the same medical challenges. His chromosomes make him no less my child that I will love and protect than my other two children. What he has contributed to society is countless. The impact he and others like him have had on my life and many others is countless. How in the world do you put a value on that?
With many kids with chromosomal abnormalities, we can anticipate that there will be some health issues. With children without chromosomal abnormalities, we can anticipate that there will be some health issues. How do we decide which one is worthy to live or have their life mean something? I read today on a community board for SN children that a mother with a new chromosomal child whois having desating spells while refluxing was advised to stop tube feeds and let the child slip away. Starving to death is not a painless death. I think asking a parent to allow their child to starve would go against EVERYTHING being a parent is. I think being a medical professional who has taken an oath to do no harm; it would be going against everything they believe and took an oath to do. So how is it, in modern society acceptable to think of these children as no more than an inhuman object deserving of starving to death? How does that happen. How do you see this person and because they have chromosomes you don't understand yet in every other way is a human child, consider them an object worthy of death because they just aren't worth the hassel. Because they won't have the quality of life that others have. How so? I know plenty of worthless, non-contributing, normal chromomosomed people who do nothing but suck from society, yet their life is more valuable, why?
I know I wouldn't be as passionate about this if it wasn't for Simon. THANK YOU GOD for his and your lessons. Simon has had challenges. Simon has been near death many times. We did all we could do to help him fight his fight to live. I would never deny him anything a typical child would need to survive under the same medical challenges. His chromosomes make him no less my child that I will love and protect than my other two children. What he has contributed to society is countless. The impact he and others like him have had on my life and many others is countless. How in the world do you put a value on that?
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