Today is Moebius Syndrome Awareness day. Although most of you that read my blog regularly know what Moebius Syndrome is, I thought I'd give a quick Moebius Syndrome 1.1 class.........
As stated on the Moebius Syndrome Foundation website, Moebius syndrome is a rare neurological disorder that is present at birth. It primarily affects the 6th and 7th cranial nerves, leaving those with the condition unable to move their faces (they can’t smile, frown, suck, grimace or blink their eyes) and unable to move their eyes laterally (Moebius Syndrome Foundation).
As is the case with Daniel, about 30% of kids affected with Moebius Syndrome are on the Autistic spectrum (Moebius Syndrome Foundation).
Danny has other brain abnormalities which complicate things, but his outward appearance is caused by the Moebius Syndrome. I really can't imagine him any other way, nor would I want him to be. Is that horrible? I just know that he has been such a huge inspiration to me and others that I think one of the biggest purposes in his life is to show people that you can be all that God intended no matter what problems you may face.
For us, I'm not sure what one thing has been the hardest part of Moebius. I think for Danny, he might say that the surgeries have been hardest. I think for me, the not knowing what to expect has been the hard but I think the hardest part is watching when other kids and at times adults have either made fun of Danny or whispered about him in our presence.
So in honor of Moebius Awareness Day, wear purple and take a look at the Foundation website to read more about this condition.
http://www.moebiussyndrome.com/
Monday, January 24, 2011
Sunday, January 16, 2011
40 and more
Turning 40 isn't so bad. I guess to be completely honest, I never thought it would be. To me, age has always been a non issue for the most part. Yeah, getting older is the pits in some ways, like having the 'ladies' act like they are praying to mecca, and wrinkles appearing where there weren't any before, knees cracking under pressure and that sort of thing. The whole thing of being out of shape isn't fun either, except that has more to do with me just being plain lazy rather than age......... So, all in all, 40 isn't bad.
Looking back, I couldn't wait until I got older so people would have to take me seriously. When I had kids I thought it would happen..... nope. When I turned 25 I thought I would have felt older or at least more mature........ definitely not! Surely at 30 I was going to be taken serious........ was that a joke? Well, i've arrived at the very mature age of 40 and very few people still take me seriously, so I guess I'll have to rethink that whole pipe dream.
Another really cool aspect of my birthday, and whether it's because it's my fortieth or not is a different story, is that I've been blessed with lots of people who wish me happy birthday all over facebook and friends who call me and sing silly songs to me (yeah that really happened). I've come to appreciate the friends and family I have immensely more than I did when i was 20 or 30. It's not that I didn't love them, it's just that I didn't understand the importance of appreciating those who love me. That might sound odd. I guess it is odd. I've always been one to want to pick up and move every few years....... Ron is JUST starting to get to think that idea isn't so bad. The moving part, not the every few years part. The funny thing is, I'm starting to think I wouldn't want to. We talked about it last night. I came to the conclusion that I think I would actually be sad to move. I have got the best friends any person could ask for...... no, really, I do.... and I love being close to my mom and dad and Ron's mom and sister. My hope is that when the kids finish school they decide to get jobs someplace really awesome so we can just go stay with them for a few weeks and drive them nuts.
Today also makes me think about my mom. I'm thankful that she had me. I'm glad she decided that they needed me even though I am 9 years younger than my sister...... I'm not sure if I'd want to start over with another baby after tasting 9 years of diaper free time. Well, not tasting the diapers, but you get the idea.
So all that being said..............turning 40 isn't so bad ............
Looking back, I couldn't wait until I got older so people would have to take me seriously. When I had kids I thought it would happen..... nope. When I turned 25 I thought I would have felt older or at least more mature........ definitely not! Surely at 30 I was going to be taken serious........ was that a joke? Well, i've arrived at the very mature age of 40 and very few people still take me seriously, so I guess I'll have to rethink that whole pipe dream.
Another really cool aspect of my birthday, and whether it's because it's my fortieth or not is a different story, is that I've been blessed with lots of people who wish me happy birthday all over facebook and friends who call me and sing silly songs to me (yeah that really happened). I've come to appreciate the friends and family I have immensely more than I did when i was 20 or 30. It's not that I didn't love them, it's just that I didn't understand the importance of appreciating those who love me. That might sound odd. I guess it is odd. I've always been one to want to pick up and move every few years....... Ron is JUST starting to get to think that idea isn't so bad. The moving part, not the every few years part. The funny thing is, I'm starting to think I wouldn't want to. We talked about it last night. I came to the conclusion that I think I would actually be sad to move. I have got the best friends any person could ask for...... no, really, I do.... and I love being close to my mom and dad and Ron's mom and sister. My hope is that when the kids finish school they decide to get jobs someplace really awesome so we can just go stay with them for a few weeks and drive them nuts.
Today also makes me think about my mom. I'm thankful that she had me. I'm glad she decided that they needed me even though I am 9 years younger than my sister...... I'm not sure if I'd want to start over with another baby after tasting 9 years of diaper free time. Well, not tasting the diapers, but you get the idea.
So all that being said..............turning 40 isn't so bad ............
Tuesday, January 4, 2011
life from the sea shore
Recently the kids and I had the opportunity to go see Jake in North Carolina. While we were there we went to Wrightsville beach and walked up and down the shore so the kids could get sea shells and fill their shoes with sand. Every car needs a pound of sand scrubbed into it's carpet from time to time.
For as far as the eye can see the shoreline goes on and on; waves lapping and dancing up to the edge and then quickly retreating as if the sand had burnt their watery toes. As I bent to pick up a broken shell, God began showing me how we as humans are like these broken and battered shells.
Every few minutes the kids would bring me a new shell to inspect and ooh and ahh over. Some of them were nice, but some of them weren't so pretty. That is when it hit me that we are just like that to others. What I regard as beauty, my kids might find boring. There were shells that my kids found that I would have quickly over looked. The neat thing was that each shell was fulfilling it's purpose, being who it was and just how God had designed it. The shell didn't, and more importantly couldn't change anything about itself to make it more appealing to the observer. I think God wants us to understand that. We don't need to change anything about ourselves to be loved, admired or chosen by God. Who cares if person X doesn't like your shell? The next shell hunter probably will and that is who needs your shell. Ok, let me speak in human terms, I think the sand went to my brain. There will be people who pass us by, who over look our gifts; however, the reason God has us here is to be Jesus for the one who needs us most. We all have unique gifts, just like every one of those shells I picked up had unique markings. The cool thing is that every one of those shells had to be broken and bounced around in the waves to be polished so they would catch our eye. I think that is how God uses most of us. We are broken and bounced around in the waves so we can be polished and honed just right to be used for His glory.
When I think back on the things in my life I have walked through, I see how God has used it to shape me into the person I am. Even the hardest things in my life like my dad's death when I was five, and the physical challenges I face with Danny, God has used those things to grow me. Yes, I felt like I was being tumbled in the waves and sometimes forgotten on the beach, but looking from the other side I can see how God was polishing me and making me into something that can hopefully glorify Him.
Next time you have the chance to go to the beach, take the time to search for some broken and imperfect shells and hold them to your ear. You never know when one of them might be speaking to you.
For as far as the eye can see the shoreline goes on and on; waves lapping and dancing up to the edge and then quickly retreating as if the sand had burnt their watery toes. As I bent to pick up a broken shell, God began showing me how we as humans are like these broken and battered shells.
Every few minutes the kids would bring me a new shell to inspect and ooh and ahh over. Some of them were nice, but some of them weren't so pretty. That is when it hit me that we are just like that to others. What I regard as beauty, my kids might find boring. There were shells that my kids found that I would have quickly over looked. The neat thing was that each shell was fulfilling it's purpose, being who it was and just how God had designed it. The shell didn't, and more importantly couldn't change anything about itself to make it more appealing to the observer. I think God wants us to understand that. We don't need to change anything about ourselves to be loved, admired or chosen by God. Who cares if person X doesn't like your shell? The next shell hunter probably will and that is who needs your shell. Ok, let me speak in human terms, I think the sand went to my brain. There will be people who pass us by, who over look our gifts; however, the reason God has us here is to be Jesus for the one who needs us most. We all have unique gifts, just like every one of those shells I picked up had unique markings. The cool thing is that every one of those shells had to be broken and bounced around in the waves to be polished so they would catch our eye. I think that is how God uses most of us. We are broken and bounced around in the waves so we can be polished and honed just right to be used for His glory.
When I think back on the things in my life I have walked through, I see how God has used it to shape me into the person I am. Even the hardest things in my life like my dad's death when I was five, and the physical challenges I face with Danny, God has used those things to grow me. Yes, I felt like I was being tumbled in the waves and sometimes forgotten on the beach, but looking from the other side I can see how God was polishing me and making me into something that can hopefully glorify Him.
Next time you have the chance to go to the beach, take the time to search for some broken and imperfect shells and hold them to your ear. You never know when one of them might be speaking to you.
Friday, December 31, 2010
Last chance before 2011
I figured I should write something being that it is the last day of Dec. and I haven't written anything this month! Time flys for sure! I actually didn't think anyone still was reading what I wrote so I was contemplating not writing any more...... but I noticed a couple comments so that made me feel like not giving up.
So, Christmas is done and after tonight 2010 will be just another number under our belts. I think I've added a few numbers under my belt this past year....
It's been an interesting year. That. is. for. sure! After three years of being free as a bird during the day I started homeschooling again. Most days I'd have to say that it was a great decision. I would be lying if I said all days were like that, but on a whole it's been pretty darn good. Danny and Ally both seem happier and now Slayt is thinking he would like to give it a try....... I guess I'll have to get Danny and Ally to not look so darn happy all the time. JUST KIDDING! I actually wouldn't mind homeschooling all of them. I just worry that Slayt is to smart for MY own good.
I also noticed that the older I get the more holidays are lonely....... at least it was this year. Other than the fact that it's fairly impossible to get everyone to get together at any time of the year, I propose that from now on, every family member has to get together in the same spot on at least ONE holiday each year! That means, cousins, aunts, uncles, sisters, brothers, etc.! oh to be a millionaire!
I started a book this year. Yeah. Don't ask how it's going. It's still sitting on page two. I have a bunch of killer first sentences, but most people wouldn't be interested in reading a 300 page book of great first sentences. However, if they would, this book would be top on the NY Times best seller list! Just saying!
I think my problem is that I am trying to edit as I write, and that just doesn't work. I need to "brain dump" and then edit later. It's just not that easy.
I'm wondering what 2011 is going to bring. I'm hoping for a stress free year, but I'm starting to realize that in the real world stress is part of life. I really liked my world better when I was young and naive and thought that money grew on trees. Ok, not on trees but it certainly grew from the pocket in your mothers pants...... and bills were optional. Trips were mandatory and Santa really was real. Yeah, I like that world better so....... can I get a do over?
Happy New Year everyone!
So, Christmas is done and after tonight 2010 will be just another number under our belts. I think I've added a few numbers under my belt this past year....
It's been an interesting year. That. is. for. sure! After three years of being free as a bird during the day I started homeschooling again. Most days I'd have to say that it was a great decision. I would be lying if I said all days were like that, but on a whole it's been pretty darn good. Danny and Ally both seem happier and now Slayt is thinking he would like to give it a try....... I guess I'll have to get Danny and Ally to not look so darn happy all the time. JUST KIDDING! I actually wouldn't mind homeschooling all of them. I just worry that Slayt is to smart for MY own good.
I also noticed that the older I get the more holidays are lonely....... at least it was this year. Other than the fact that it's fairly impossible to get everyone to get together at any time of the year, I propose that from now on, every family member has to get together in the same spot on at least ONE holiday each year! That means, cousins, aunts, uncles, sisters, brothers, etc.! oh to be a millionaire!
I started a book this year. Yeah. Don't ask how it's going. It's still sitting on page two. I have a bunch of killer first sentences, but most people wouldn't be interested in reading a 300 page book of great first sentences. However, if they would, this book would be top on the NY Times best seller list! Just saying!
I think my problem is that I am trying to edit as I write, and that just doesn't work. I need to "brain dump" and then edit later. It's just not that easy.
I'm wondering what 2011 is going to bring. I'm hoping for a stress free year, but I'm starting to realize that in the real world stress is part of life. I really liked my world better when I was young and naive and thought that money grew on trees. Ok, not on trees but it certainly grew from the pocket in your mothers pants...... and bills were optional. Trips were mandatory and Santa really was real. Yeah, I like that world better so....... can I get a do over?
Happy New Year everyone!
Sunday, November 28, 2010
Thanksgiving and so on.
Kermit the Frog said it isn't easy being green, but I think that it's even harder being a mom..........
The older I get, the more I realize how many times I must have made my mom cry. If I could go back and redo every time I ever did, I would. Although hindsight is always better than foresight.
It's amazing to me that out of anyone in the world, kids can make a mom feel at the top of the world or at the bottom of the ocean. It's not fair I guess that kids have all that put on their shoulders, and I don't think it's intentional, it just is the way it is. I know that any friend could make a sarcastic remark to me and it may hurt but it's forgotten or brushed off within an hour or two, but when kids make a cutting remark to a mom it cuts deep to the heart like nothing else can. The words linger and mull around for days.....
This Thanksgiving pretty much sucked. Not that it was bad I guess. There were a lot of positve things about the week. I got to spend quite a bit of time with my oldest son and it was the highlight of my week..... then my second oldest came home for the week and I got to see him a little. He spent quite a bit of time out of the house, but I keep telling myself that is what college students do when they don't get home much. Right? Yeah, I'm gonna go with that. He has big decisions on his brain and that caused a lot of angst..... more for me I think than him.......... I'm wondering if it's easier to just pull away from the ones who love you the most when stress is in your life????? Although for me, it just makes me think I must be part of the stress.... Ugh, my mind works to much I think. Why can't I think more like a man? Yeah, I know. It's the estrogen thing.....
The other nice thing about the week was that my mother-in-law and sister-in-law came Thanksgiving day and had dinner with us. That was really nice. I really have a fantastic mother in law. And I even say that knowing she doesn't even read my blog........But it was nice they came, especially since my mom was in Ct with two of my other sisters and their families....... and my other sister and her family, including my favorite nephew and favorite niece in law and great niece who were there from Germany, were in Arkansas..........but the nice thing was that I was at least invited to Arkansas.
I'm not exactly sure why I'm mildly depressed about this past week. Well, actually I am. I could write about exact things, but since this blog is public I won't. But just know that there are specifics. Some things I guess are stupid and irrational, other things are valid and should change but what am I? God? Thank Him I'm not, because I'm pretty certain I would screw it up. At the very least I would smite some people off the face of the earth and I'm pretty sure He doesn't do that when people make Him sad. At least I hope not..... wait, is that a meteor coming my way??
The older I get, the more I realize how many times I must have made my mom cry. If I could go back and redo every time I ever did, I would. Although hindsight is always better than foresight.
It's amazing to me that out of anyone in the world, kids can make a mom feel at the top of the world or at the bottom of the ocean. It's not fair I guess that kids have all that put on their shoulders, and I don't think it's intentional, it just is the way it is. I know that any friend could make a sarcastic remark to me and it may hurt but it's forgotten or brushed off within an hour or two, but when kids make a cutting remark to a mom it cuts deep to the heart like nothing else can. The words linger and mull around for days.....
This Thanksgiving pretty much sucked. Not that it was bad I guess. There were a lot of positve things about the week. I got to spend quite a bit of time with my oldest son and it was the highlight of my week..... then my second oldest came home for the week and I got to see him a little. He spent quite a bit of time out of the house, but I keep telling myself that is what college students do when they don't get home much. Right? Yeah, I'm gonna go with that. He has big decisions on his brain and that caused a lot of angst..... more for me I think than him.......... I'm wondering if it's easier to just pull away from the ones who love you the most when stress is in your life????? Although for me, it just makes me think I must be part of the stress.... Ugh, my mind works to much I think. Why can't I think more like a man? Yeah, I know. It's the estrogen thing.....
The other nice thing about the week was that my mother-in-law and sister-in-law came Thanksgiving day and had dinner with us. That was really nice. I really have a fantastic mother in law. And I even say that knowing she doesn't even read my blog........But it was nice they came, especially since my mom was in Ct with two of my other sisters and their families....... and my other sister and her family, including my favorite nephew and favorite niece in law and great niece who were there from Germany, were in Arkansas..........but the nice thing was that I was at least invited to Arkansas.
I'm not exactly sure why I'm mildly depressed about this past week. Well, actually I am. I could write about exact things, but since this blog is public I won't. But just know that there are specifics. Some things I guess are stupid and irrational, other things are valid and should change but what am I? God? Thank Him I'm not, because I'm pretty certain I would screw it up. At the very least I would smite some people off the face of the earth and I'm pretty sure He doesn't do that when people make Him sad. At least I hope not..... wait, is that a meteor coming my way??
Saturday, October 23, 2010
time flys and boys who drive me to drink =)
Why is it that time is going faster? Seriously, it is. When I was young, time seemed to move at a snails pace in winter and now it seems like the weeks race by like a greyhound on steroids...... sheesh! I'm pretty positive that it was last week that my now 17 yr old was 10 and my now 12 year old was 5. Yeah, seriously. It used to bug the heck out of me when people would tell me as a new mother that "time would go by fast and enjoy it while I could", because first of all, I thought I knew it all and second of all, I was usually sleep deprived and only wanted to get back to the days of sleeping until at least 8am...... Well, now here we are 21 years since it all began and they were right! Time did go by fast.
Today we went to Rock City, which after going, I"m not sure why we have never gone there. It was amazing! I surprised myself that I didn't have a heart attack because of the crevices that were waiting to swallow the kids at each step. I couldn't go there with the older boys, because 21 and 19 year olds just don't listen to their mother anymore and I'm positive that they would try to jump a boulder and end up at the bottom of the canyon crumpled....... all while their poor helpless mother (me) watches in horror. Little do they know is that I would put "i told you to listen" on their headstones........
Last night I was watching Mythbusters, yeah, I"m a geek. Anyway, they did this experiment with a dummy and they dropped it 100ft into the water to see what the impact would be. Well, needless to say the dummy died, or it would have if it was real. Which made me think of the boys and their cliff jumping,,,,,,, and think, and think, and think........ that's when I decided to open a bottle of wine. Why worry when I can wine? Knowing that they wouldn't believe me if I told them that at 100ft, they would die, or be dismembered at the very least, I think I will just have them watch Mythbusters when it comes back on as a rerun..... however, i'm not so sure they will believe me even then..... oh gosh...... is it time for another glass of wine?
Today we went to Rock City, which after going, I"m not sure why we have never gone there. It was amazing! I surprised myself that I didn't have a heart attack because of the crevices that were waiting to swallow the kids at each step. I couldn't go there with the older boys, because 21 and 19 year olds just don't listen to their mother anymore and I'm positive that they would try to jump a boulder and end up at the bottom of the canyon crumpled....... all while their poor helpless mother (me) watches in horror. Little do they know is that I would put "i told you to listen" on their headstones........
Last night I was watching Mythbusters, yeah, I"m a geek. Anyway, they did this experiment with a dummy and they dropped it 100ft into the water to see what the impact would be. Well, needless to say the dummy died, or it would have if it was real. Which made me think of the boys and their cliff jumping,,,,,,, and think, and think, and think........ that's when I decided to open a bottle of wine. Why worry when I can wine? Knowing that they wouldn't believe me if I told them that at 100ft, they would die, or be dismembered at the very least, I think I will just have them watch Mythbusters when it comes back on as a rerun..... however, i'm not so sure they will believe me even then..... oh gosh...... is it time for another glass of wine?
Thursday, October 14, 2010
it's been a long time....
Oh my word! It's been over a month since I've written. Life just keeps chugging along and most of the time I feel like I am running to catch up. The summer went wayyyyyyy to quickly and here we are already half way through October.
It's been a busy, crazy fall so far. Yeah, I know, it's only been fall for about 3 or 4 weeks, right? UGH! Since the beginning of September, I've been to North Carolina, Abby has had her wisdom teeth out, we begun installing new windows and insulation and Danny has been having meltdowns every stinking day.
All of the busyness is manageable, except for the Danny meltdowns. It was about three weeks ago that his teacher had to physically pull him from me because he was just clinging to me. Yeah, that just about makes me shiver thinking about it. There isn't a day that goes by that he doesn't cry or complain about hating school or not wanting to go. Yeah, I know, what kid WANTS to go to school? But this whole thing is way more than just your typical school aversion. First of all, Ron and I are pretty darn sure that 3rd grade is way to stinking hard for him. Why? Well, because he can't count past 30 without help most days, adding or subtracting anything more than single digits is over his head and up until this year he has been fine with school. Oh, did I mention that the tests the school psychologist did last year showed that he was consistently at a k.9- 1.3 grade level in math and no more than a 2.1 grade level in any area. Seems to me, they should have kept him back. Well, the school doesn't want to do that because they figure they can't keep retaining him....... well, then sorry charlie, but you can't expect him to keep up with his peers just because he gets older. He is socially and academically behind. But what the heck do I know? I'm just the mother. SHEESH!!!!!
Next on my list is this whole writing a book ish type thing. Yeah, so I'm submitting an entry to a writing contest. It has to be something inspirational, uplifting, something that changed my life. Hmmmmmm, what to write about? Did I mention it had to be 10,000 words or more? Hmmmmmm again. So, today I started writing. I had one story idea in my brain so i typed away frantically for awhile. Then my gray matter stopped working. That's when I figure a food break is needed. Come back to the computer and still nothing. So I start a second topic...... write frantically again and AGAIN, the brain quits. Go back to the first story, write, crash, eat......... and that is how the rest of my day went. I'm hoping that if I can at least keep up some sort of writing then at least I will get somewhere, somehow. Blogging is so much easier... grammar doesn't count, i'm not being judged, well........, at least grammar doesn't count.
It's been a busy, crazy fall so far. Yeah, I know, it's only been fall for about 3 or 4 weeks, right? UGH! Since the beginning of September, I've been to North Carolina, Abby has had her wisdom teeth out, we begun installing new windows and insulation and Danny has been having meltdowns every stinking day.
All of the busyness is manageable, except for the Danny meltdowns. It was about three weeks ago that his teacher had to physically pull him from me because he was just clinging to me. Yeah, that just about makes me shiver thinking about it. There isn't a day that goes by that he doesn't cry or complain about hating school or not wanting to go. Yeah, I know, what kid WANTS to go to school? But this whole thing is way more than just your typical school aversion. First of all, Ron and I are pretty darn sure that 3rd grade is way to stinking hard for him. Why? Well, because he can't count past 30 without help most days, adding or subtracting anything more than single digits is over his head and up until this year he has been fine with school. Oh, did I mention that the tests the school psychologist did last year showed that he was consistently at a k.9- 1.3 grade level in math and no more than a 2.1 grade level in any area. Seems to me, they should have kept him back. Well, the school doesn't want to do that because they figure they can't keep retaining him....... well, then sorry charlie, but you can't expect him to keep up with his peers just because he gets older. He is socially and academically behind. But what the heck do I know? I'm just the mother. SHEESH!!!!!
Next on my list is this whole writing a book ish type thing. Yeah, so I'm submitting an entry to a writing contest. It has to be something inspirational, uplifting, something that changed my life. Hmmmmmm, what to write about? Did I mention it had to be 10,000 words or more? Hmmmmmm again. So, today I started writing. I had one story idea in my brain so i typed away frantically for awhile. Then my gray matter stopped working. That's when I figure a food break is needed. Come back to the computer and still nothing. So I start a second topic...... write frantically again and AGAIN, the brain quits. Go back to the first story, write, crash, eat......... and that is how the rest of my day went. I'm hoping that if I can at least keep up some sort of writing then at least I will get somewhere, somehow. Blogging is so much easier... grammar doesn't count, i'm not being judged, well........, at least grammar doesn't count.
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