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.
Thursday, May 31, 2012
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.
Tuesday, May 1, 2012
Sleep Safe Bed, Now if Only I Could Get Him to Sleep!
Yesterday we got some of the most fabulous news. Simon's Sleep Safe Bed was approved! We should have it in a few weeks! Right now Simon sleeps, and I use sleep lightly, in a cheap, low to the ground trundle that is rigged with blankets, stuffed animals, side rails and prayers that he doesn't fall out. For a non-ambulatory child, Simon is very mobile. We have been lucky. More importantly, he needs to sleep more upright and on the left to prevent his reflux and sleep apnea. Its impossible to keep him in any position, but I hope this bed will be the solution we're hoping for.
Simon has C-Diff right now and there is a strong chance that he is hurting still, but man, he just doesn't want to sleep. He actually seems lonely to me. He'll whine and its not his "I'm in pain" whine, its just a "Hey, I'm not happy" whine. It stops when we get to him. I brought him in our room and that seemed to work for awhile, then he was mad again. He can't have Melatonin because it has alcohol in it and that interferes with his Flagyl. I can't say with a lot of confidence that it ever really worked anyway. None of the other sleep aides ever worked either. He has actually slept a little though so I'll hang on to that blessing; but I'm old and tired and I really like sleep.
I always try to concentrate on our blessings. Some days are tougher than others, but in the end life is really good. Its so easy to get caught up in the hard stuff and believe me I've had weeks where everything felt like they were just going wrong. I've had my funks, but I think its important to pull everything within you to make sure you don't let yourself slip into that negative thinking for too long. It just tires you out and it just spirals down. Every single day there is at least one thing to be thankful for; more than likely several things. Look for those and you'll never be sorry.
Simon has C-Diff right now and there is a strong chance that he is hurting still, but man, he just doesn't want to sleep. He actually seems lonely to me. He'll whine and its not his "I'm in pain" whine, its just a "Hey, I'm not happy" whine. It stops when we get to him. I brought him in our room and that seemed to work for awhile, then he was mad again. He can't have Melatonin because it has alcohol in it and that interferes with his Flagyl. I can't say with a lot of confidence that it ever really worked anyway. None of the other sleep aides ever worked either. He has actually slept a little though so I'll hang on to that blessing; but I'm old and tired and I really like sleep.
I always try to concentrate on our blessings. Some days are tougher than others, but in the end life is really good. Its so easy to get caught up in the hard stuff and believe me I've had weeks where everything felt like they were just going wrong. I've had my funks, but I think its important to pull everything within you to make sure you don't let yourself slip into that negative thinking for too long. It just tires you out and it just spirals down. Every single day there is at least one thing to be thankful for; more than likely several things. Look for those and you'll never be sorry.
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