This country is a better place because of you.
Wednesday, August 26, 2009
Saturday, August 1, 2009
I and Love and You
Update (Sept. 22 2009): You can hear the entire album on NPR from now until Sept. 29 .
I can't wait for the new Avett Brothers album. So if you are like me here is the track list with links to the youtube performances to hold you over. I can't find them all but this is what I have found so far.
1. I and Love and You
2. January Wedding
3. Head Full of Doubt, Road Full of Promise
4. And it Spread (I was at this show)
5. The Perfect Space
6. Ten Thousand Words
7. Kick Drum Heart
8. Laundry Room
9. Ill with want
10. Tin Man
11. Slight Figure of Speech
12. It Goes On and On
13. Incomplete and Insecure
Rarities; not released yet?
Down With The Shine
Telling Time
In the curve
Another
I can't wait for the new Avett Brothers album. So if you are like me here is the track list with links to the youtube performances to hold you over. I can't find them all but this is what I have found so far.
1. I and Love and You
2. January Wedding
3. Head Full of Doubt, Road Full of Promise
4. And it Spread (I was at this show)
5. The Perfect Space
6. Ten Thousand Words
7. Kick Drum Heart
8. Laundry Room
9. Ill with want
10. Tin Man
11. Slight Figure of Speech
12. It Goes On and On
13. Incomplete and Insecure
Rarities; not released yet?
Down With The Shine
Telling Time
In the curve
Another
Monday, June 29, 2009
You Can't Go Home
So I don't mean to transcribe the entire book in this blog but here is another excerpt from Travels with Charley that resonates with me. I have felt this, and just as much as the memory of me stands still back home as time goes on, my memory of home stands still as my life goes on... Despite what Bon Jovi says, you can't home.
"...What we know is dead, and maybe the greatest part of what we were is dead. What's out there is new and perhaps good, but its nothing we know... The place of my origin had changed, and having gone away I had not changed with it. In my memory it stood as it once did and its outward appearance confused and angered me. What I am about to tell must be the experience of very many in this nation where so many wander and come back. I called on old and valued friends. I thought their hair had receded a little more than mine. The greetings were enthusiastic. The memories flooded up. Old crimes and old triumphs were brought out and dusted. And suddenly my attention wandered, and looking at my ancient friend, I saw that his wandered also. And it was true what I had said to Johnny Garcia-- I was the ghost. My town had grown and changed and my friend along with it. Now returning, as changed to my friend as my town was to me, I distorted his picture, muddied his memory. When I went away I had died, and so became fixed and unchangeable. My return caused only confusion and uneasiness. Although they could not say it, my old friends wanted me gone so that I could take my proper place in the pattern of remembrance--and I wanted to go for the same reason. Tom Wolfe was right. You can't go home again because home has ceased to exist except in the mothballs of memory."
This song is me:
"...What we know is dead, and maybe the greatest part of what we were is dead. What's out there is new and perhaps good, but its nothing we know... The place of my origin had changed, and having gone away I had not changed with it. In my memory it stood as it once did and its outward appearance confused and angered me. What I am about to tell must be the experience of very many in this nation where so many wander and come back. I called on old and valued friends. I thought their hair had receded a little more than mine. The greetings were enthusiastic. The memories flooded up. Old crimes and old triumphs were brought out and dusted. And suddenly my attention wandered, and looking at my ancient friend, I saw that his wandered also. And it was true what I had said to Johnny Garcia-- I was the ghost. My town had grown and changed and my friend along with it. Now returning, as changed to my friend as my town was to me, I distorted his picture, muddied his memory. When I went away I had died, and so became fixed and unchangeable. My return caused only confusion and uneasiness. Although they could not say it, my old friends wanted me gone so that I could take my proper place in the pattern of remembrance--and I wanted to go for the same reason. Tom Wolfe was right. You can't go home again because home has ceased to exist except in the mothballs of memory."
This song is me:
Friday, June 26, 2009
Sunday, June 21, 2009
Say It Ain't So
MDA camp has been canceled this year because of the swine flu. This is devastating news to so many campers that live for this week. The concern is that many campers have suppressed and weak immune and respiratory systems, and they don't want to take the chance of potentially infecting any campers. I guess there have already been several cases where campers have been infected at this year's camps.
My old camp was one of the remaining camps that has been canceled. What a monumental let down. I guarantee, given option to go regardless, most campers and parents would take the risk... That is how much this camp means to these kids.
MDA probably did the right thing... but... Man what a huge decision to have to make. The reality is some campers will die before next year. This is truly the most important week of the year for most of them. You can't understand it, unless you see it or experience it first hand.
My old camp was one of the remaining camps that has been canceled. What a monumental let down. I guarantee, given option to go regardless, most campers and parents would take the risk... That is how much this camp means to these kids.
MDA probably did the right thing... but... Man what a huge decision to have to make. The reality is some campers will die before next year. This is truly the most important week of the year for most of them. You can't understand it, unless you see it or experience it first hand.
Thursday, June 18, 2009
Social Creatures
In 1960 John Steinbeck embarked on a journey across the country with his Poodle Charley. He said that he realized that he had been writing stories about the American life but that he hadn't really known the extent of people, cultures, or places in his great country. His journey is chronicled in what I think is his only non-fiction book Travels with Charley; in Search of America. The following is an excerpt from the book that spoke to my core. I understand exactly what he means by this and it really speaks to the human spirit; that we are social creatures and that we need each other:
"Having a companion fixes you in time and that the present, but when the quality of aloneness settles down, past, present, and future all flow together. A memory, a present event, and a forecast all equally present... A number of years ago I had some experience with being alone. For two succeeding years I was alone each winter for eight months at a stretch in the Sierra Nevada mountains on Lake Tahoe. I was a caretaker on a summer estate during the winter months when it was snowed in. And I made some observations then. As the time went on I found that my reactions thickened. Ordinarily I am a whistler. I stopped whistling. I stopped conversing with my dogs, and I believe that subtleties of feeling began to disappear until finally I was on a pleasure-pain basis. Then it occurred to me that the delicate shades of feeling, of reaction, are the result of communication, and without such communications they tend to disappear. A man with nothing to say has no words. Can its reverse be true--a man who has no one to say anything to has no words as he has no need for words? Now and then there appear accounts of babies raised by animals--wolves and such. It is usually reported that the youngster crawls on all fours, makes those sounds learned from his foster parents, and perhaps even thinks like a wolf. Only through imitation do we develop toward originality..."
And this is why I blog.
"Having a companion fixes you in time and that the present, but when the quality of aloneness settles down, past, present, and future all flow together. A memory, a present event, and a forecast all equally present... A number of years ago I had some experience with being alone. For two succeeding years I was alone each winter for eight months at a stretch in the Sierra Nevada mountains on Lake Tahoe. I was a caretaker on a summer estate during the winter months when it was snowed in. And I made some observations then. As the time went on I found that my reactions thickened. Ordinarily I am a whistler. I stopped whistling. I stopped conversing with my dogs, and I believe that subtleties of feeling began to disappear until finally I was on a pleasure-pain basis. Then it occurred to me that the delicate shades of feeling, of reaction, are the result of communication, and without such communications they tend to disappear. A man with nothing to say has no words. Can its reverse be true--a man who has no one to say anything to has no words as he has no need for words? Now and then there appear accounts of babies raised by animals--wolves and such. It is usually reported that the youngster crawls on all fours, makes those sounds learned from his foster parents, and perhaps even thinks like a wolf. Only through imitation do we develop toward originality..."
And this is why I blog.
Monday, June 8, 2009
Drill Baby Drill...
Four small cavities. It has been a while so I am not too ashamed. It took four and half hours, but I am left with a solid, decay-free grill. Can't give up the sugar babies though.
Saturday, June 6, 2009
Deal Breaker(s)
Seriously?! As if the Bud Light you were drinking wasn't enough... you went and dropped $20 in the jukebox to play Dierks Bentley and 50 other shitty country songs? Come on, wtf? I take it back, your cowgirl boots are no longer hot and neither are you... Check please!
Saturday, May 9, 2009
Bloggy Blogosphere
Oh my. I have not vented to the cyber world in way too long. There is something therapeutic about typing this gibberish even if nobody reads it... if you are reading this then consider yourself one of a smattering few.
Yummy. I just finished my tuna steak seared in a soy sauce and sesame seed concoction... mmm delish. Really rare, the only way... So I have been working four 10's the past few weeks. The long weekends are nice. I facilitate the destruction of nature for four days a week then chill for three. The beach closed this weekend, and rumor has it that it is going to be closed for three weeks because of the Hubble mission. I like the space program as long as it doesn't cut into my beach time... but I'll let this one slide. They have two shuttles on the pads now, which is a rarity in its own right, one is for the mission and one is the rescue ship. If there is an emergency they will launch the rescue vessel asap.
Soooo they are holding the extended security until the mission is complete. Basically that means I can't go to the beach. But I did go down to Poor-Man's Playlinda (PMP) with G today. (Nobody knows what PMP means except for me... I just invented it... that's what I do, keep it fresh, keep it rizeal yo). I don't know why I haven't done that before. I still like the beach better but I can't take Mr. Barky Von Schnauzer out there. It was an enjoyable time; got my read on, and my tan on, and my "Gunner, come here" on.
I am reading Travels with Charley finally. It's been sitting on my shelf for probably the better part of three years. It makes me dream of the road... that nostalgic feeling you get when you embark on a journey, not knowing where the road may lead, just knowing that you are on your way. Ahh, those are the best... Pura Vida. Steinbeck's escapades have inspired me to explore New England later this summer or fall... if I don't completely destroy the earth by then.
Ah yes, its nice to be busy but its a tough pill to swallow when you take a step back. The wetlands I have seen in the last month have been nothing short of beautiful. All dry, but each its own oasis... and all doomed. But maybe in a sense, with the growing population, these wetlands will not die in vain... Their replacements will be bigger, better and protected forever. If they were to be picked off one by one, victims of development and agriculture, the functions they provide may not be mitigated. And, its hard to say, but when you put it into perspective (coming from someone who's home is not on the slate to be strip mined), phosphate is more limited than fossil fuels, and considering 65% of the U.S. phosphate comes from the Tampa area, it's hard to argue against a local sacrifice for the big picture. Kind of puts an odd spin on the old mantra, think globally, act locally doesn't it?
The fact of the matter is that we have created a monster--the human population. Phosphate is an essential nutrient, that, along with nitrogen and potassium is responsible for the yield explosion of the 20th century that has facilitated such population growth. There are certainly environmental tolls associated with the use of fertilizer while achieving those yields that I am well aware of, and frankly those impacts can be prevented, minimized and managed, but from a food demand perspective alone, this growing population needs fertilizer. So I will continue to help permit the destruction of these wetlands so that we can have that summer sweet corn and watermelon... and when we are done I am going ask for a tour of the wetland restoration projects on the former mine sites to lift my spirits...
Yummy. I just finished my tuna steak seared in a soy sauce and sesame seed concoction... mmm delish. Really rare, the only way... So I have been working four 10's the past few weeks. The long weekends are nice. I facilitate the destruction of nature for four days a week then chill for three. The beach closed this weekend, and rumor has it that it is going to be closed for three weeks because of the Hubble mission. I like the space program as long as it doesn't cut into my beach time... but I'll let this one slide. They have two shuttles on the pads now, which is a rarity in its own right, one is for the mission and one is the rescue ship. If there is an emergency they will launch the rescue vessel asap.
Soooo they are holding the extended security until the mission is complete. Basically that means I can't go to the beach. But I did go down to Poor-Man's Playlinda (PMP) with G today. (Nobody knows what PMP means except for me... I just invented it... that's what I do, keep it fresh, keep it rizeal yo). I don't know why I haven't done that before. I still like the beach better but I can't take Mr. Barky Von Schnauzer out there. It was an enjoyable time; got my read on, and my tan on, and my "Gunner, come here" on.
I am reading Travels with Charley finally. It's been sitting on my shelf for probably the better part of three years. It makes me dream of the road... that nostalgic feeling you get when you embark on a journey, not knowing where the road may lead, just knowing that you are on your way. Ahh, those are the best... Pura Vida. Steinbeck's escapades have inspired me to explore New England later this summer or fall... if I don't completely destroy the earth by then.
Ah yes, its nice to be busy but its a tough pill to swallow when you take a step back. The wetlands I have seen in the last month have been nothing short of beautiful. All dry, but each its own oasis... and all doomed. But maybe in a sense, with the growing population, these wetlands will not die in vain... Their replacements will be bigger, better and protected forever. If they were to be picked off one by one, victims of development and agriculture, the functions they provide may not be mitigated. And, its hard to say, but when you put it into perspective (coming from someone who's home is not on the slate to be strip mined), phosphate is more limited than fossil fuels, and considering 65% of the U.S. phosphate comes from the Tampa area, it's hard to argue against a local sacrifice for the big picture. Kind of puts an odd spin on the old mantra, think globally, act locally doesn't it?
The fact of the matter is that we have created a monster--the human population. Phosphate is an essential nutrient, that, along with nitrogen and potassium is responsible for the yield explosion of the 20th century that has facilitated such population growth. There are certainly environmental tolls associated with the use of fertilizer while achieving those yields that I am well aware of, and frankly those impacts can be prevented, minimized and managed, but from a food demand perspective alone, this growing population needs fertilizer. So I will continue to help permit the destruction of these wetlands so that we can have that summer sweet corn and watermelon... and when we are done I am going ask for a tour of the wetland restoration projects on the former mine sites to lift my spirits...
Monday, March 23, 2009
Kids are Stupid
I was on my way home from a bike ride Saturday when I rode by this little boy riding his bike on the sidewalk... he was probably fourish years old. So when he saw me ride by he tried to ride with me, or maybe he was trying to race me, but as we rode nearly side by side I noticed that he was starring at me and not the neighbor's car that was parked across the side walk. I said "watch it" and as I passed the car I heard his tires sliding... Judging by his speed and how close he was to the car, I think he probably kissed it... But I didn't hear a bang or a scream so I assumed he would fine. I know I am a jerk, but I didn't stop. His dad was there to handle the situation. It was like a dog chasing a car.
Monday, March 16, 2009
Community Matters
This Jay Leno thing has me on the verge of tears. Jay Leno is putting on a free show for out-of-work Detroiters in April. Tickets were available starting this morning, and were gone by 11:00am. So Jay announced a second show the following day.
The thing that I find so moving about this is the fact that Jay billed this from the beginning as Jay's Stimulus package. It was offered to the unemployed of Detroit. I know Jay is an avid collector of bikes and automobiles and can only assume that this is his way of giving back to the people that make the motors he loves.
But aside from the Leno's commitment are the other stories. The actual stories of the people in line. People that woke up to go stand in line for tickets, because they no longer had jobs to wake up for, all in an effort to live on, to still provide something for their families, even if it is a free comedy show to lighten the burdens of the times.
Then there are the other stories. Domino's Pizza, a Michigan company, offered free pizza to people in line, delivered by the sexy Piston's dance team. Pepsi is providing free soda (I mean "pop") during the event. Parking is free, everything is free.
Finally something good for the city. While this is a relatively small, isolated event it is just an example of a community coming together, not to solve the problem, but to just pick each other up, for a moment, and forget about how tough life is right now.
Photo from the Detroit Free Press
The thing that I find so moving about this is the fact that Jay billed this from the beginning as Jay's Stimulus package. It was offered to the unemployed of Detroit. I know Jay is an avid collector of bikes and automobiles and can only assume that this is his way of giving back to the people that make the motors he loves.
But aside from the Leno's commitment are the other stories. The actual stories of the people in line. People that woke up to go stand in line for tickets, because they no longer had jobs to wake up for, all in an effort to live on, to still provide something for their families, even if it is a free comedy show to lighten the burdens of the times.
Then there are the other stories. Domino's Pizza, a Michigan company, offered free pizza to people in line, delivered by the sexy Piston's dance team. Pepsi is providing free soda (I mean "pop") during the event. Parking is free, everything is free.
Finally something good for the city. While this is a relatively small, isolated event it is just an example of a community coming together, not to solve the problem, but to just pick each other up, for a moment, and forget about how tough life is right now.
Photo from the Detroit Free Press
Monday, March 9, 2009
1/14 Marathon
I ran in my first race this weekend--the Stingray Shuffle at Brevard Zoo. It was only a 3k, but a challenge for me. It was harder than what I thought because most of the route was on sandy gravel... which also made it pretty dusty for us in the back of the herd. I had only trained on hard surfaces so I expended more energy on the sand/gravel. I finished in 569th place out of ~840ish people. It was a sweet victory for me. Personal milestone. I have never done anything like that before. I ran the whole way. Didn't walk any part, though there were people power walking faster than I was running. As we approached the finish this lady was like "come on catch up with her", talking about this girl in front of me. I ignored it for a second but than decided to push it. I caught up to her just before the finish, but let her cross before me.
Super Ed came down to watch. He is injured right now so he couldn't run. He probably would have won the whole thing if he was running... or at least it would have been a close finish. As it was the winner finished almost a minute ahead of the second place runner. It was nice to have somebody there. As much as I don't like to acknowledge ever needing support, I secretly appreciated him being there.
I made the mistake of swapping out good batteries for bad in my camera so I didn't get any pictures. But I did get a pretty cool shirt to prove that I at least paid the entrance fee.
Super Ed came down to watch. He is injured right now so he couldn't run. He probably would have won the whole thing if he was running... or at least it would have been a close finish. As it was the winner finished almost a minute ahead of the second place runner. It was nice to have somebody there. As much as I don't like to acknowledge ever needing support, I secretly appreciated him being there.
I made the mistake of swapping out good batteries for bad in my camera so I didn't get any pictures. But I did get a pretty cool shirt to prove that I at least paid the entrance fee.
Thursday, February 19, 2009
Dance Like Nobody's Watching
Oh my. This video brings me sooo much joy. I love it when people just live in the moment. I can't ever image myself cutting loose like this, but maybe someday I will have the courage to dance like nobody's watching.
Wednesday, February 18, 2009
Sweet Nothings - A Thorough Review
So I brought a box of the new no calorie sweetener Truvia to work today and set it next to the Splenda for my peps to try. Truvia is marketed as "nature's no calorie sweetener" made from leaves of the stevia plant. I first heard about this in December while driving to the Miami airport, and since it is a three and a half hour drive, I heard the same NPR segment three times. Not sure why we didn't change the station... anyway.
Normally, I would use raw unrefined cane sugar, but the office has always had Splenda, so I kind of got in the habit of using that at work... and it is delicious. But, convinced that Truvia was better than Splenda I designed the experiment... Well so far I have to say I prefer Splenda. Truvia smells like cotton candy, which isn't a bad thing. They claim that one packet has the same sweetness as two teaspoons of sugar, but it seems to me that it takes more packets to achieve the same level of sweetness... However, maybe I am conditioned to Splenda and sugar, and Truvia is just a different kind of sweetness... We will see; there are 40 packets in the box... I am not sure what others think yet but I have a feeling it is not going to catch on here...
But don't let this opinion suade you from trying it. I will probably try it a few more times myself.
Normally, I would use raw unrefined cane sugar, but the office has always had Splenda, so I kind of got in the habit of using that at work... and it is delicious. But, convinced that Truvia was better than Splenda I designed the experiment... Well so far I have to say I prefer Splenda. Truvia smells like cotton candy, which isn't a bad thing. They claim that one packet has the same sweetness as two teaspoons of sugar, but it seems to me that it takes more packets to achieve the same level of sweetness... However, maybe I am conditioned to Splenda and sugar, and Truvia is just a different kind of sweetness... We will see; there are 40 packets in the box... I am not sure what others think yet but I have a feeling it is not going to catch on here...
But don't let this opinion suade you from trying it. I will probably try it a few more times myself.
Monday, February 9, 2009
So In Love
Lately I have described my likeness of country music as having an inverse relationship to my intelligence over time. The more intelligent I have become the less I like pop/mainstream country music. Despite my efforts to disavow country I can no longer deny my love for Jennifer Nettles. I love everything from her sweet southern-bell drawl to her powerful vocals; she is the shiz... However. Yeah she looked ridiculous ['ly good] at the beginning of the Grammy's but the getup she changed into for the performance was a huge disappointment, much like the mom jeans she wore at the CMA's last year. (not that I watched the CMA's... I don't like country remember).
Other thoughts on the Grammy's (well so far, I haven't finished watching it yet)... My boy Jay Z and Coldplay dee-livered a ridiculous rendition of Lost. (click here for similar version; the Grammy's version got taken down). Sa-weet!..
Will somebody please stop Lil Wayne... how the hell did he get so popular. Who is telling people that he is cool, because seriously, nobody can actually like him on their own accord. He reminds me of Dave Chappelle's crack-head character on Chappelle's Show.
Kid Rock reminds me of my friends back home... It means what it means. I can tell he is Michigan bred. I feel like I could have graduated high school with Mr. Ritchie. I am not saying I am not a fan, or that I am... But in reality it doesn't matter if you like his music, if you are from the mitten state you like Kid. I remember the first time I heard All Summer Long last year; I just knew it would be the song played every day, on every boat, in every truck, on every dock, at every bar, and everywhere in between around my old stompin' ground... and it was. Cuz it was summer time in northern Michigan...
Other thoughts on the Grammy's (well so far, I haven't finished watching it yet)... My boy Jay Z and Coldplay dee-livered a ridiculous rendition of Lost. (click here for similar version; the Grammy's version got taken down). Sa-weet!..
Will somebody please stop Lil Wayne... how the hell did he get so popular. Who is telling people that he is cool, because seriously, nobody can actually like him on their own accord. He reminds me of Dave Chappelle's crack-head character on Chappelle's Show.
Kid Rock reminds me of my friends back home... It means what it means. I can tell he is Michigan bred. I feel like I could have graduated high school with Mr. Ritchie. I am not saying I am not a fan, or that I am... But in reality it doesn't matter if you like his music, if you are from the mitten state you like Kid. I remember the first time I heard All Summer Long last year; I just knew it would be the song played every day, on every boat, in every truck, on every dock, at every bar, and everywhere in between around my old stompin' ground... and it was. Cuz it was summer time in northern Michigan...
Thursday, February 5, 2009
I Have Officially Become My Father
You know how I know? Handkerchiefs. I started using hankies. Well I started about a year ago. I use them because they are not wasteful like tissues. I am not sure why my old man uses them. Probably because that is what old people do/did. Maybe old is the new green... except old industry. The old subsistent way of life is probably the new green.
On days like today I wish I had a sham-hankie; you know like the Shamwow. Super absorbent.
On days like today I wish I had a sham-hankie; you know like the Shamwow. Super absorbent.
Sunday, January 25, 2009
B-52's are Back
Its that time of year again. On our walk this morning Big Guns and I saw a huge flock of white pelicans glide over my 'hood. There must have been 500 of them. They have been down for a while but this is the largest flock I have seen this year. They are so big, yet so stealthy; seems like they never have to flap their wings. I didn't even hear them, just happened to catch a glimpse of the graceful gliders out of the corner of my eye.
I saw a story this morning about a plane aborting take-off in Orlando because the pilot thought he had hit a flock of birds. In lite of the recent water landing on the Hudson, I can understand the sensitivity to that. I thought it was interesting, though, the way they shaped the story to almost blame bird conservation efforts for an increase in the occurrence of these incidents... That may be a reasonable assumption... But hmm, there's an interesting dilemma...
I saw a story this morning about a plane aborting take-off in Orlando because the pilot thought he had hit a flock of birds. In lite of the recent water landing on the Hudson, I can understand the sensitivity to that. I thought it was interesting, though, the way they shaped the story to almost blame bird conservation efforts for an increase in the occurrence of these incidents... That may be a reasonable assumption... But hmm, there's an interesting dilemma...
Monday, January 19, 2009
The Early Bird Gets The Gurt
So apparently there seems to be a global shortage of the 32 oz Strawberry Stonyfield Organic Yogurt. Everytime I go to Publix they are out, every Publix is out, all the time. Talk about rage, or reason to rage anyway. Sure I could settle on vanilla, blah, or get the small containers and destroy the planet even more than I am already, then try to explain to Gunner that the reason we lost the house was because I had to buy more expensive, smaller containers of yogurt (he doesn't even speak human).... Or I can get up early on a Sunday morning and buy all the 32 oz strawberry they have, like I did yesterday... I sort of felt guilty, but then I thought about the last 500 bajillion times I wanted strawberry and it was not there... sorry suckers. I have one month to eat 96 oz of yogurt before if curdles. I think I am up for the challenge, especially if Rose and Jo give me some more of that delicious Amish bread to dip in my 32 oz strawberry dairy goodness...
Sorry Titusville, you'll have to get up pretty early in the morning get a container of this yogurt...
Sorry Titusville, you'll have to get up pretty early in the morning get a container of this yogurt...
Saturday, January 10, 2009
A Young Parent's Resolution
Saw this on Post Secret a couple weeks ago:
This post tears me up a bit. The infant form of Spinal Muscular Atrophy is the most deadly form of muscular dystrophy. Originally, I was diagnosed with the juvenile form of SMA (not as serious, not deadly). But as I got older it was determined that I did not have SMA.
I am guessing this parent probably knew nothing about SMA or MD before this rocked their family. Much like my family... And I image it is much harder on the parents than the kids. The kids don't know anything different, but the parents can grasp the reality of the situation and are forced to navagate through the rocky sea. That's a tough place to be... I can't image.
Thankfully MDA is there.
This post tears me up a bit. The infant form of Spinal Muscular Atrophy is the most deadly form of muscular dystrophy. Originally, I was diagnosed with the juvenile form of SMA (not as serious, not deadly). But as I got older it was determined that I did not have SMA.I am guessing this parent probably knew nothing about SMA or MD before this rocked their family. Much like my family... And I image it is much harder on the parents than the kids. The kids don't know anything different, but the parents can grasp the reality of the situation and are forced to navagate through the rocky sea. That's a tough place to be... I can't image.
Thankfully MDA is there.
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