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.
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?
Friday, June 8, 2012
Exercise, Eating Better and Frustration
I was so paranoid of injury and my health during my marathon training, I did little exercise other than running and watched my eating within reason. Finishing the marathon gave me a sense of freedom to go for it with other exercise and more eating restrictions. Plus I felt so bloated after, I just felt like something had to happen.
I belong to an LDS group of runners and people into over all fitness and we started a weight loss challenge. When I weighed in, I got serious sticker (scale) shock, but it was what it was and I reported it. This is the first week and though I still have room for improvement, I have eaten very well and exercised every single day. My clothes barely fit today. I don't know if my body is rebelling or if I have something hormonal going on, but I'm frustrated and a little ticked. I know its only the first week so I'm not going to give up or anything, but I am seriously sitting here wishing I could wear sweats to work. Yuck.
I've been sleeping better now that Simon is. I'm drinking lots and lots of water. I'm eating lots and lots of vegetables. So what the heck?!
Has anyone out there had an experience with this? Does it just take patience?
I belong to an LDS group of runners and people into over all fitness and we started a weight loss challenge. When I weighed in, I got serious sticker (scale) shock, but it was what it was and I reported it. This is the first week and though I still have room for improvement, I have eaten very well and exercised every single day. My clothes barely fit today. I don't know if my body is rebelling or if I have something hormonal going on, but I'm frustrated and a little ticked. I know its only the first week so I'm not going to give up or anything, but I am seriously sitting here wishing I could wear sweats to work. Yuck.
I've been sleeping better now that Simon is. I'm drinking lots and lots of water. I'm eating lots and lots of vegetables. So what the heck?!
Has anyone out there had an experience with this? Does it just take patience?
Monday, June 4, 2012
I'm Going to be the BEST Old Lady!
I'm already forgetful, hard of hearing and needing granny glasses. I'm 41 and don't want to admit any of that so my world has gotten a lot more interesting from the things I remember, hear and see. Apparently my brain usually hears dirty things because I have to snap my head up to see what the guy on the T.V. actually said because there is no way he said what I heard on Antenna TV and especially the great George Burns would never use that language or innuendo.
The sweet thing that I am (eye roll here) is getting more daring and belligerent as I get older and its pretty hilarious; to me. I'm not sure how the people on the other side of it feel, but luckily as an old lady, I don't care. It makes it more fun to see the mortified look in some one's eyes.
I dance to muzak in the grocery store isles; well lets be honest, I've always done that. If a kid is being a snot, I let them know they are being a snot, to their face; loudly.
I plan on being very fit and strong and dancing the night away until I'm well into my 90's. I plan on wearing loud colors and have bright blue or pink hair, maybe even lavender. I might just get some obnoxious tattoo on my bum that says something like "Juicy" or Foxy Lady" just so my nurses have something interesting to tell their families after work changing my diapers.
I imagine myself with my close old lady friends strutting around the home like mean girls ruling the roost, in our Eddie Bauer capri's and sensible shoes. I imagine Dave in his old man cardigans staring out the window just wishing I would shut up, you know like he does now.....
I'm going to embrace every change and make it the most fun ever. You know, like I do now.....
The sweet thing that I am (eye roll here) is getting more daring and belligerent as I get older and its pretty hilarious; to me. I'm not sure how the people on the other side of it feel, but luckily as an old lady, I don't care. It makes it more fun to see the mortified look in some one's eyes.
I dance to muzak in the grocery store isles; well lets be honest, I've always done that. If a kid is being a snot, I let them know they are being a snot, to their face; loudly.
I plan on being very fit and strong and dancing the night away until I'm well into my 90's. I plan on wearing loud colors and have bright blue or pink hair, maybe even lavender. I might just get some obnoxious tattoo on my bum that says something like "Juicy" or Foxy Lady" just so my nurses have something interesting to tell their families after work changing my diapers.
I imagine myself with my close old lady friends strutting around the home like mean girls ruling the roost, in our Eddie Bauer capri's and sensible shoes. I imagine Dave in his old man cardigans staring out the window just wishing I would shut up, you know like he does now.....
I'm going to embrace every change and make it the most fun ever. You know, like I do now.....
Thursday, May 31, 2012
I Am A Mormon
I'm not a good Mormon. I'm not a typical Mormon. I am a Mormon by choice and not by birth, but I am a Mormon and I am proud of it.
I have been through the Temple and treasure and loved the experience. I'm between temple recommends right now because of life challenges and the fact that I'm a human being. Based on the criteria of the religion I CHOOSE, I have things to work on. I don't expect others who choose another faith or non-faith based life to do the things I do nor think poorly of them if they do. Heck, if they do choose the same faith I do not think poorly of them if they do things I would not do. I do take my covenants seriously. Though not in the way others would necessarily do it.
Above everything, I believe in the atonement and free agency. I govern my life and no one elses. Each individual life is between them and the diety of their choice. Per the articles of faith, I respect and accept others of different believes and like to learn about them.
I do not fit in. I never have anywhere really. That is exactly how I like it. I am comfortable around most people unless they're critical, rude and judgemental; then I can't get away from them quick enough.
I get annoyed by people, but for the most part I like people. I like learning about other people's lives and experiences. I respect those that have learned how to improve their lives to be exactly who they want and hope to be someday. I don't think there is one person on this Earth that is not in some place of progression, even if they think they are perfect and have no improvement left.
I don't presume to know what my Heavenly Father will judge people on. Its not my business. I think it will be based on a knowledge and love far greater than what is in my capicity.
I have a wicked, irreverant sense of humor. I find humor in just about everything. I hope God does too.....
I think if we truly strive to live like Jesus, most difficult life questions wouldn't be so difficult. I strive to make Jesus and my Heavenly Father proud; not my neighbors.
That in a nutshell are my thoughts regarding myself and my religion. I do and will accept anyone in my life regardless of background. Unless you're an A-hole, then I won't want to be around you. You can congreate with other A-hole's. If you're good to me, I will be good to you. Simple.
I have been through the Temple and treasure and loved the experience. I'm between temple recommends right now because of life challenges and the fact that I'm a human being. Based on the criteria of the religion I CHOOSE, I have things to work on. I don't expect others who choose another faith or non-faith based life to do the things I do nor think poorly of them if they do. Heck, if they do choose the same faith I do not think poorly of them if they do things I would not do. I do take my covenants seriously. Though not in the way others would necessarily do it.
Above everything, I believe in the atonement and free agency. I govern my life and no one elses. Each individual life is between them and the diety of their choice. Per the articles of faith, I respect and accept others of different believes and like to learn about them.
I do not fit in. I never have anywhere really. That is exactly how I like it. I am comfortable around most people unless they're critical, rude and judgemental; then I can't get away from them quick enough.
I get annoyed by people, but for the most part I like people. I like learning about other people's lives and experiences. I respect those that have learned how to improve their lives to be exactly who they want and hope to be someday. I don't think there is one person on this Earth that is not in some place of progression, even if they think they are perfect and have no improvement left.
I don't presume to know what my Heavenly Father will judge people on. Its not my business. I think it will be based on a knowledge and love far greater than what is in my capicity.
I have a wicked, irreverant sense of humor. I find humor in just about everything. I hope God does too.....
I think if we truly strive to live like Jesus, most difficult life questions wouldn't be so difficult. I strive to make Jesus and my Heavenly Father proud; not my neighbors.
That in a nutshell are my thoughts regarding myself and my religion. I do and will accept anyone in my life regardless of background. Unless you're an A-hole, then I won't want to be around you. You can congreate with other A-hole's. If you're good to me, I will be good to you. Simple.
Wednesday, May 23, 2012
Journey to a Marathon
I first toyed with the idea of doing a marathon back around 2004. It was mostly a fleeting "hmmm maybe" type of thought. Soon after I found out I was pregnant with Simon and knew it couldn't even be a thought or consideration. Not devastating just, oh well. While walking in a March of Dimes walk on the same day as the marathon, I saw myself admiring and envying the runners, but thought that it never could happen so I just let the thought leave.
Once Simon was born, it seemed like all life revolved around his care and learning how to care for him and pretty much all other outside life came to a halt if it couldn't include him. Over time, Dave and I both realized that we needed to find ourselves and what we enjoy again, separate from the rest of our lives. He started doing his music again and I started running. I hated being out of shape and how I felt and running was the easiest exercise to fit in, even though it was still difficult with the unpredictable life Simon led. After talking to a mom who also has a SN child as well as other younger children, she said buy the shoes and enter the race; spend some money and you will find a way to fit it in. So that's what I did. I signed up for a 5K and began training.
On the race day of the 5K, I rode the bus with a woman who had run some marathons and some half's and just said, "if you can do a half, you can do a marathon". I had never run more than 5 miles, in my life. The idea was planted. I ran the 5K and had a good time and felt proud but didn't really have a marathon in my sights, just that "hmmm" thought again. It didn't seem so impossible after all. But was it?
I made the goal of training as if I was training for a half marathon. I figured if I could run 13miles by the time of marathon sign ups I would go ahead and sign up for the marathon. Why not just sign up for the half do you ask? Yeah, that's just not my style. If I was going to do it, I was going to do it all the way. I had my feet checked out before I did my first 8. Luckily I have a great podiatrist who just gets it and though I have tendinitis and bone spurs he gave me the all clear, saying my feet are as good as they get right now and surgery was at least a couple of years away.
I ran 8 and then 10. I started learning more about the need to fuel after 10 miles. When it was time to do my 13, I had a physical done. The doctor found a bigimeny and I had to halt training until after my echo was done. I had to wait a week for the echo and then another week for the results. I was able to run, he just asked that I take it down a notch. My heart structure was fine and I was able to run again. I was taking heart meds in the mean time and with his permission I weened off while making sure to cut down my caffeine. I'm a diet coke fanatic and I knew it was time to let it go.
With my training stalled, I had to start easing back into higher miles. The first few months of every year is Simon testing and doctor visits time and that made it difficult to get my miles in. I still had plenty of time, but not as much time as I was hoping to have under my belt.
I finally ran my first 13 by doing the first half of the marathon course. It was snowy and muddy and a tough run, but I completed it.
My whole goal during this journey was to make sure I stayed healthy and injury free so I always approached each run as finishing the miles and not finishing them fast. Week by week I followed my training plan but remained flexible in the way I have over the years of being Simon's mother.
Three weeks before the marathon I finally squeezed in my 20. That was the final week of higher miles and now it was time to taper and mentally prepare for the Marathon. I was pumped and ready. and the rest is well, history. Now, I'm pretty much hooked...
If you want something, commit to it. Cultivate it. Do not accept anything else. And to quote NIKE "Just do it!"
Once Simon was born, it seemed like all life revolved around his care and learning how to care for him and pretty much all other outside life came to a halt if it couldn't include him. Over time, Dave and I both realized that we needed to find ourselves and what we enjoy again, separate from the rest of our lives. He started doing his music again and I started running. I hated being out of shape and how I felt and running was the easiest exercise to fit in, even though it was still difficult with the unpredictable life Simon led. After talking to a mom who also has a SN child as well as other younger children, she said buy the shoes and enter the race; spend some money and you will find a way to fit it in. So that's what I did. I signed up for a 5K and began training.
On the race day of the 5K, I rode the bus with a woman who had run some marathons and some half's and just said, "if you can do a half, you can do a marathon". I had never run more than 5 miles, in my life. The idea was planted. I ran the 5K and had a good time and felt proud but didn't really have a marathon in my sights, just that "hmmm" thought again. It didn't seem so impossible after all. But was it?
I made the goal of training as if I was training for a half marathon. I figured if I could run 13miles by the time of marathon sign ups I would go ahead and sign up for the marathon. Why not just sign up for the half do you ask? Yeah, that's just not my style. If I was going to do it, I was going to do it all the way. I had my feet checked out before I did my first 8. Luckily I have a great podiatrist who just gets it and though I have tendinitis and bone spurs he gave me the all clear, saying my feet are as good as they get right now and surgery was at least a couple of years away.
I ran 8 and then 10. I started learning more about the need to fuel after 10 miles. When it was time to do my 13, I had a physical done. The doctor found a bigimeny and I had to halt training until after my echo was done. I had to wait a week for the echo and then another week for the results. I was able to run, he just asked that I take it down a notch. My heart structure was fine and I was able to run again. I was taking heart meds in the mean time and with his permission I weened off while making sure to cut down my caffeine. I'm a diet coke fanatic and I knew it was time to let it go.
With my training stalled, I had to start easing back into higher miles. The first few months of every year is Simon testing and doctor visits time and that made it difficult to get my miles in. I still had plenty of time, but not as much time as I was hoping to have under my belt.
I finally ran my first 13 by doing the first half of the marathon course. It was snowy and muddy and a tough run, but I completed it.
My whole goal during this journey was to make sure I stayed healthy and injury free so I always approached each run as finishing the miles and not finishing them fast. Week by week I followed my training plan but remained flexible in the way I have over the years of being Simon's mother.
Three weeks before the marathon I finally squeezed in my 20. That was the final week of higher miles and now it was time to taper and mentally prepare for the Marathon. I was pumped and ready. and the rest is well, history. Now, I'm pretty much hooked...
If you want something, commit to it. Cultivate it. Do not accept anything else. And to quote NIKE "Just do it!"
Tuesday, May 22, 2012
Yeah, That's Right; I'm a Marathoner!
Friday night I picked up my packet and browsed around. I was so excited and anxious I could hardly contain myself. I was worried my excitement would turn to nervousness, but it never did. I gave everyone strict instructions that I would be going to bed by 9PM and I was not to be disturbed for any reason.
Before I knew it, it was 4AM Saturday morning. I bounded out of bed and put on the supplies that I carefully checked off the night before. I was ready!
I met up with two runners I met online and we boarded the buses. I was still excited and just wanted to GO! When we reached the mountain, we did a quick pit stop and waited by the fire barrels. I ran into my old home teacher that gave me some great last minute advice and it was inching closer to start time. I lingered in the back a little because I knew I would be a slower runner. My goal this whole time was to finish healthy, strong and injury free. I approached all my training the same way. I knew if I didn't exert myself that this would be the wonderful experience I was hoping for.
The count down started and away we went. I had to use the bathroom almost instantly and made a quick stop. I walked through the first aide stations, just as planned and drank all I could hold. I kept running forward.
At mile 8 I started looking for Hayden and Sydney and saw them on bikes heading my way with a sign:
I started to cry. It was so wonderful to see them and to know I was on track. Nothing encourages you more than seeing your family rooting for you. The next big milestone was the half way mark; mile 13.1. A young man ran down toward me and offered me food. I took a half a banana and he said let me run with you. He ran me in and made sure he got my name. I can not express how much having these wonderful volunteers made such a positive experience of this race. Throughout the next 10 miles or so, I would see this same young man on a bike, asking me by name how I was doing and encouraging me.
What was surprising to me is how fantastic I felt. The time was just racing by and I felt good! The next big obstacle was the 1/2 uphill portion of the race. I had planned ahead of time to walk up the hill. On the way up my left knee started feeling out of sorts, so I made sure I took long, stretching strides to make sure it was getting the full range of motion. I reached the point just before entering the canyon and was making decent time (to my standards).
The canyon was beautiful and just breathtaking. I just ran forward without much thought, though I was becoming increasingly aware of a small stone in my shoe, I didn't want to stop for it. If you are going to do a marathon, you just can't beat the ability to lose yourself in this canyon. The miles just melted away. As I exited the canyon I was very aware of the 23 mile marker. Everyone had warned me about this point in the race as you come off the downhill slope and do rolling hills and its supposed to be brutal on your legs. I was running this section thinking to myself how easy and nice this section was. I didn't know what all the fuss was. Apparently my body decided to make me aware of what the fuss was about. I suddenly became aware of some pain in my feet and hips. I started walking around mile 24. As mile 25 was approaching, I was not going to allow myself to not run in. It plain was not going to happen, so I started running. At mile 26, I could see the finish so close and started ugly crying. A gentleman on the sidelines started running beside me and said, "No crying! You show me a smile!" So I smiled to the end where I saw the family waiting for me. I ran to their arms and started crying loudly and uncontrollably. It was such an overwhelming and wonderful feeling to know that I had just finished a full marathon and my family and friends were there waiting for me. It was so much a sacrifice for them as it was for me during my training.
Before I knew it, it was 4AM Saturday morning. I bounded out of bed and put on the supplies that I carefully checked off the night before. I was ready!
I met up with two runners I met online and we boarded the buses. I was still excited and just wanted to GO! When we reached the mountain, we did a quick pit stop and waited by the fire barrels. I ran into my old home teacher that gave me some great last minute advice and it was inching closer to start time. I lingered in the back a little because I knew I would be a slower runner. My goal this whole time was to finish healthy, strong and injury free. I approached all my training the same way. I knew if I didn't exert myself that this would be the wonderful experience I was hoping for.
The count down started and away we went. I had to use the bathroom almost instantly and made a quick stop. I walked through the first aide stations, just as planned and drank all I could hold. I kept running forward.
At mile 8 I started looking for Hayden and Sydney and saw them on bikes heading my way with a sign:
I started to cry. It was so wonderful to see them and to know I was on track. Nothing encourages you more than seeing your family rooting for you. The next big milestone was the half way mark; mile 13.1. A young man ran down toward me and offered me food. I took a half a banana and he said let me run with you. He ran me in and made sure he got my name. I can not express how much having these wonderful volunteers made such a positive experience of this race. Throughout the next 10 miles or so, I would see this same young man on a bike, asking me by name how I was doing and encouraging me.
What was surprising to me is how fantastic I felt. The time was just racing by and I felt good! The next big obstacle was the 1/2 uphill portion of the race. I had planned ahead of time to walk up the hill. On the way up my left knee started feeling out of sorts, so I made sure I took long, stretching strides to make sure it was getting the full range of motion. I reached the point just before entering the canyon and was making decent time (to my standards).
The canyon was beautiful and just breathtaking. I just ran forward without much thought, though I was becoming increasingly aware of a small stone in my shoe, I didn't want to stop for it. If you are going to do a marathon, you just can't beat the ability to lose yourself in this canyon. The miles just melted away. As I exited the canyon I was very aware of the 23 mile marker. Everyone had warned me about this point in the race as you come off the downhill slope and do rolling hills and its supposed to be brutal on your legs. I was running this section thinking to myself how easy and nice this section was. I didn't know what all the fuss was. Apparently my body decided to make me aware of what the fuss was about. I suddenly became aware of some pain in my feet and hips. I started walking around mile 24. As mile 25 was approaching, I was not going to allow myself to not run in. It plain was not going to happen, so I started running. At mile 26, I could see the finish so close and started ugly crying. A gentleman on the sidelines started running beside me and said, "No crying! You show me a smile!" So I smiled to the end where I saw the family waiting for me. I ran to their arms and started crying loudly and uncontrollably. It was such an overwhelming and wonderful feeling to know that I had just finished a full marathon and my family and friends were there waiting for me. It was so much a sacrifice for them as it was for me during my training.
I felt and feel so absolutely fantastic. I never felt over tired. I never hit any walls. The day was perfect. The course was perfect. My shoelaces never once came untied. It was as if everything just came together perfectly for my special experience. I just kept going slow and steady, just like Simon has taught me.
Wednesday, May 9, 2012
Let's Talk About Pride
A recent conversation with several people about the hardships of raising a special needs child has had me thinking about Simon and what I've struggled with in raising him. I'm not what you would call a sensitive person. I'm not what you would call a graceful or quietly dignified person. Not by a long shot. I appreciate blunt discussion and people with an abundance of candor. Even if it hurts my feelings a little, I appreciate knowing what someone is truly thinking so I can respond appropriately. I don't care if its PC. I hate PC thinking and speaking; its dishonest in my humble opinion and nothing is accomplished with dishonesty. Not to say I don't appreciate diplomacy; I mean we don't need to smack someone down and kick them with our thoughts, but be frank, be honest and we'll get along.
As I've mentioned before, I am severe ADHD and miss many social ques and socially inappropriate behavior because by the time I've noticed, I've been distracted by something else completely and forgotten that any action has taken place at all. So I'm rarely aware of the negative behavior directed at us. Its a gift really.
One of my favorite interactions I had with someone regarding Simon was a waitress at Olive Garden. He was about two years old and still in an infant carrier seat, because he was only 15-16lbs at the time. Teeny. She flat out asked me, "What's wrong with him." I proceeded to give her the condensed version. I realized sometime earlier that when asked about Simon, I was starting to sound like the grandparents from "16 Candles" and figured I needed to put a lid on it a little. I appreciated that she just flat out asked and didn't stare and scrutinize him. I was able to address her questions openly and honestly. If she just stared and wondered, I probably would have been thrown out of Olive Garden and possibly thrown into jail. I can't stand it when people stare at him and don't ask the question that they are wondering. Simon is a beautiful child that acts a little wacky and its not obvious that he has a chromosomal disorder. His is so different there are no distinct (to a non-geneticist) facial features; just actions that are unusual.
Now to get to pride. I love Simon and am proud of him. Its never occurred to me to be anything but. My child is strong, happy and stubborn. All traits I admire. He has been through more in his almost 7 years of life than I have been in my whole entire life. Having to see him go through it is very difficult. Having to worry for his life is very difficult; but ashamed? Never, not even a little bit. He brings a spirit of such a wonderful feeling there are no words to describe it. Because of him I have learned to not sweat the small stuff in my other boys. I am lucky to have a child that teaches me such wonderful things and not get caught up in the petty, petty things in life. I have been saddened by the things he is unable to do, but I slap myself in the face quickly and hard! There is nothing "wrong" with him. If anything he is on a much higher plane than the rest of us. I am proud of every single thing he is. I'm ashamed for the people who can't see it, but I don't let it consume my thoughts. I really don't care what anyone else thinks. I mean I really don't care. It has absolutely no bearing on my pride for my perfect son. If you're not sure how to interact with him or not sure what to do, just ask; I LOVE showing him off!
We are who we are. Life is what it is and its just that, our life; our version of normal. Really, I just want people to treat us accordingly.
As I've mentioned before, I am severe ADHD and miss many social ques and socially inappropriate behavior because by the time I've noticed, I've been distracted by something else completely and forgotten that any action has taken place at all. So I'm rarely aware of the negative behavior directed at us. Its a gift really.
One of my favorite interactions I had with someone regarding Simon was a waitress at Olive Garden. He was about two years old and still in an infant carrier seat, because he was only 15-16lbs at the time. Teeny. She flat out asked me, "What's wrong with him." I proceeded to give her the condensed version. I realized sometime earlier that when asked about Simon, I was starting to sound like the grandparents from "16 Candles" and figured I needed to put a lid on it a little. I appreciated that she just flat out asked and didn't stare and scrutinize him. I was able to address her questions openly and honestly. If she just stared and wondered, I probably would have been thrown out of Olive Garden and possibly thrown into jail. I can't stand it when people stare at him and don't ask the question that they are wondering. Simon is a beautiful child that acts a little wacky and its not obvious that he has a chromosomal disorder. His is so different there are no distinct (to a non-geneticist) facial features; just actions that are unusual.
Now to get to pride. I love Simon and am proud of him. Its never occurred to me to be anything but. My child is strong, happy and stubborn. All traits I admire. He has been through more in his almost 7 years of life than I have been in my whole entire life. Having to see him go through it is very difficult. Having to worry for his life is very difficult; but ashamed? Never, not even a little bit. He brings a spirit of such a wonderful feeling there are no words to describe it. Because of him I have learned to not sweat the small stuff in my other boys. I am lucky to have a child that teaches me such wonderful things and not get caught up in the petty, petty things in life. I have been saddened by the things he is unable to do, but I slap myself in the face quickly and hard! There is nothing "wrong" with him. If anything he is on a much higher plane than the rest of us. I am proud of every single thing he is. I'm ashamed for the people who can't see it, but I don't let it consume my thoughts. I really don't care what anyone else thinks. I mean I really don't care. It has absolutely no bearing on my pride for my perfect son. If you're not sure how to interact with him or not sure what to do, just ask; I LOVE showing him off!
We are who we are. Life is what it is and its just that, our life; our version of normal. Really, I just want people to treat us accordingly.
Tuesday, May 8, 2012
I Got my Bib# and Now I Might Puke
I opened an email this morning from GOAL Foundation, they are the people who send you the correspondence about the marathon. Enclosed was my bib# and the reminder that we were less than two weeks away. My nerves wet up and I thought I might throw up! It seemed soooooo long away and I couldn't wait for it to get here. Now its here and I'm full of anxiety, but still really excited to start and especially finish.
There is no doubt in my mind I can finish. I read the most beautiful thing today, something I had misunderstood in the past; this new knowledge lifted a HUGE weight. I had the understanding that I had to be finished by 1:00pm; I felt iffy about being able to finish in 6 hours, because I KNOW I'll need potty breaks; there is just no two ways about that. My long run pace can run into the 14min/mile range sometimes and with potty breaks I was concerned. WELL, I just have to be out of the canyon by 1:00. That is NO PROBLEM at all. I KNOW I can do that. What a gift to finally, really read this carefully and understand it. My anxiety went down about 50 notches. Whew!
If you've done long distance running, you understand how BM's become a big part of your life. I thought having Simon got me obsessed with poop; I had no idea it could get worse. Luckily I have found some great resources, but none so helpful as my new favorite blog and all her good, practical advice about everything, especially poop found here. She talks about the good the bad and the ugly about all aspects of running and I appreciate it so much. I just hope my nerves don't make it all moot!
So before I know it, I'll be waking up at 4am to drive down and catch the bus to the start line by 5am on Saturday, May 19th. All I can do is run forward. I do know that I've got that in me. Yesterday I kept trying to talk myself out of running, then into running a shorter distance; but I kept moving forward. I have the preserverance to do this; I've done the training. Now all I have to do is show up.
There is no doubt in my mind I can finish. I read the most beautiful thing today, something I had misunderstood in the past; this new knowledge lifted a HUGE weight. I had the understanding that I had to be finished by 1:00pm; I felt iffy about being able to finish in 6 hours, because I KNOW I'll need potty breaks; there is just no two ways about that. My long run pace can run into the 14min/mile range sometimes and with potty breaks I was concerned. WELL, I just have to be out of the canyon by 1:00. That is NO PROBLEM at all. I KNOW I can do that. What a gift to finally, really read this carefully and understand it. My anxiety went down about 50 notches. Whew!
If you've done long distance running, you understand how BM's become a big part of your life. I thought having Simon got me obsessed with poop; I had no idea it could get worse. Luckily I have found some great resources, but none so helpful as my new favorite blog and all her good, practical advice about everything, especially poop found here. She talks about the good the bad and the ugly about all aspects of running and I appreciate it so much. I just hope my nerves don't make it all moot!
So before I know it, I'll be waking up at 4am to drive down and catch the bus to the start line by 5am on Saturday, May 19th. All I can do is run forward. I do know that I've got that in me. Yesterday I kept trying to talk myself out of running, then into running a shorter distance; but I kept moving forward. I have the preserverance to do this; I've done the training. Now all I have to do is show up.
Monday, May 7, 2012
The Great Enemy in My Mind
Due to posting my "Pin-Up" style pictures I got a lot of compliments. I won't tell you how much I scrutinized those pictures. I actually had a few and only shared the two that I thought best represented me. I found too many flaws in the other pictures. I can tell you about forty things I think are wrong with my physical appearance. I was talking to someone today who will recognize herself but I will not name her out of respect. I told her how stunning she is and how we often talk about how cute she is and what style she has. She stated she was trying to believe it. It just floored me that she had to work at recognizing how beautiful she is. Then I thought, well that's how I feel. It embarrasses me to be told I look good; because the voices in my head tell me otherwise.
I'm the type that often comes across as confident because I am outgoing and loud and all the things people think of when they think someone has it together. Luckily ADHD makes it difficult to read social ques, so we just don't care and are loud and outgoing. BUT, my appearance since having Simon especially is down the toilet. I actual wonder sometimes how anyone can like me this fat. Its sad. Yep, its really sad, but that is what so many people deal with. Those awful voices in our head that are our own worst enemies telling us we're not worthy of even friendship because we've let ourselves get out of shape. Or whatever your enemy voices tell you that's wrong. I do think its important to be aware of improvements you would like to make in your life; I'm talking about those things that keep you from enjoying your life and who you are right now.
I am going to make a special effort to celebrate who I am, just as I am. I am going to challenge anyone reading this to do the same for themselves. Start telling those voices to suck it! Tell them they are not welcome. Start welcoming those voices that tell you that you are beautiful, that you are important and most importantly that you are worthy of friendship and love no matter what. It will keep you from becoming a miserable person and we've already discussed how much they suck!
I'm the type that often comes across as confident because I am outgoing and loud and all the things people think of when they think someone has it together. Luckily ADHD makes it difficult to read social ques, so we just don't care and are loud and outgoing. BUT, my appearance since having Simon especially is down the toilet. I actual wonder sometimes how anyone can like me this fat. Its sad. Yep, its really sad, but that is what so many people deal with. Those awful voices in our head that are our own worst enemies telling us we're not worthy of even friendship because we've let ourselves get out of shape. Or whatever your enemy voices tell you that's wrong. I do think its important to be aware of improvements you would like to make in your life; I'm talking about those things that keep you from enjoying your life and who you are right now.
I am going to make a special effort to celebrate who I am, just as I am. I am going to challenge anyone reading this to do the same for themselves. Start telling those voices to suck it! Tell them they are not welcome. Start welcoming those voices that tell you that you are beautiful, that you are important and most importantly that you are worthy of friendship and love no matter what. It will keep you from becoming a miserable person and we've already discussed how much they suck!
Thursday, May 3, 2012
My Marathon and Noah's Never Ending Rainbow
I will be running my very first marathon ever on May 19th. In order to keep myself going and to make this accomplishment about more than just myself and my family, I will be raising money and awareness for Noah’s Never Ending Rainbow (NNER)
They are an organization that supports all types of Trisomy, even the wacky ones like Simon’s. We have had to apply for assistance for Simon’s medical bills from them this year as well, so you know when you support them you are supporting families with Trisomy. Trisomy is considered to be incompatible with life, so every single day is a blessing for families to spend with their Trisomy loved one. Simon will be SEVEN in June!
This year will be a little different since I am running a marathon and not a 5K. I will be letting you bet on me or against me. You can pledge by mile or a flat amount for me to finish or not finish. You choose how much and how you’re pledging. I will collect the pledges after the marathon and send them in bulk to NNER. If you prefer to donate directly to NNER, you are more than welcome to at: http://noahsneverendingrainbow.org/ ; just please put “Valorie’s Marathon” on your donation. Yes that picture on their front page is Simon in the middle with his Trisomy friends in Chicago.
Thank you all for always being such a great support!
Wednesday, May 2, 2012
Miserable People
You want to know how to spot a miserable person? They're the ones that are angry that you are succeeding. They are the ones that tell you what you are doing successfully is either a waste of time or impossible. These people are full of self-loathing because they are not making an effort to improve their lives and the excuses they want to use are being overcome by you. Therefore their excuses are proving invalid. Talking to these people are draining. They don't offer anything good in your life. Cut. Them. Loose. I don't care if they are family, old friends or a co-worker. I'm not saying don't ever speak to them again, just make sure you don't share a part of yourself that they don't and can't appreciate. Let them congregate with other miserable people and you surround yourself with people that uplift and inspire you; make sure you do the same for them.
Maybe its me getting older, but I just don't have any tolerance for it. None. When I was young I wanted to please, I wanted to help a miserable person be happy. I still do actually, but now I've gotten a bit wiser and know when its a lost cause. Most the time they think you're happiness is some form of manipulation, that's all them. It can't keep you from being kind, but you can learn when its time to not waste your energy, because you can't afford to, they'll suck it all from you.
Most importantly, its okay to feel joy. Its okay for you to strive and accomplish something without anyone else feeling bad about themselves. Its okay to be the best you can be and always try to be better. Its possible to be loving without sacrificing your soul. Let the miserable people be miserable; you don't need to join them.
Maybe its me getting older, but I just don't have any tolerance for it. None. When I was young I wanted to please, I wanted to help a miserable person be happy. I still do actually, but now I've gotten a bit wiser and know when its a lost cause. Most the time they think you're happiness is some form of manipulation, that's all them. It can't keep you from being kind, but you can learn when its time to not waste your energy, because you can't afford to, they'll suck it all from you.
Most importantly, its okay to feel joy. Its okay for you to strive and accomplish something without anyone else feeling bad about themselves. Its okay to be the best you can be and always try to be better. Its possible to be loving without sacrificing your soul. Let the miserable people be miserable; you don't need to join them.
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