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to MJ's Update Web Page. It has been provided to keep people updated about MJ and her travels and health. MJ has Spinal Muscular Atrophy, Type 1. To learn more about SMA please visit SMA Support
If you want to support fundraising for SMA, please visit Marshall's Miles , Payton's Pals, FightSMA, SMA Foundation , Miracle for Madison and Friends , SMA Support, or Connecticut Chapter of FSMA !! Thanks!
MJ also received a beautiful cross stitched quilt from Cole's quilts ! If you know how to cross stitch or know someone who does, and have time, please volunteer to do a quilt square for one or more of the kids!
Want to view more pictures of MJ??
Visit MJ's Picture Page
MJ's other webpages are
MJ's page at Our-SMA-Angels
Check it out!
MJ has started her own organization. It is for children who have been diagnosed with SMA. Please visit B4SMA or the B4SMA Journal if you wish to know more about the organization! Thank you!
Check out MJ's friends page to visit MJ's friends!
Please check out Our-SMA-Angels to see more MJ's friends with SMA!
My Wish
Rascal Flatts
I hope that days come easy and moments pass slow,
And each road leads you where you want to go,
And if you're faced with a choice, and you have to choose,
I hope you choose the one that means the most to you.
And if one door opens to another door closed,
I hope you keep on walkin' till you find the window,
If it's cold outside, show the world the warmth of your smile,
More than anything, more than anything,
My wish, for you, is that this life becomes all that you want it,
To your dreams stay big, and your worries stay small,
You never need to carry more than you can hold,
And while you're out there getting where you're getting to,
I hope you know somebody loves you, and wants the same things too,
Yeah, this, is my wish.
I hope you never look back, but ya never forget,
All the ones who love you, in the place you left,
I hope you always forgive, and you never regret,
And you help somebody every chance you get,
Oh, you find God's grace, in every mistake,
And you always give more than you take.
Oh More than anything, Yeah, and more than anything,
My wish, for you, is that this life becomes all that you want it,
To your dreams stay big, and your worries stay small,
You never need to carry more than you can hold,
And while you're out there getting where you're getting to,
I hope you know somebody loves you, and wants the same things too,
Yeah, this, is my wish.
I dedicate the following song to Emma Clare, Forever 3 years old! Love you!
If Heaven
By: Andy Griggs
If heaven was an hour, it would be twilight
When the fireflies start dancin on the lawn
And suppers on the stove and mammas laughin
And everybody’s workin day is done
If heaven was a town it would be my town
Oh…on a summer day in 1985
And everything I wanted is out there waiting
And everyone I loved is still alive
Chorus:
Don’t cry a tear for me now baby
There comes a time we all must say goodbye
And if that’s what heavens made of
You know I, I ain’t afraid to die
If heaven was a pie it would be cherry
So, Cool and sweet and heavy on the tongue
And just one bite would satisfy your hunger
And there’d always be enough for everyone
If heaven was a train it sure would be a fast one
that could take this weary traveler round the bend
if heaven was a tear it'd be my last one
And you’d be in my arms again
Chorus:
Don’t cry a tear for me now baby
There comes a time we must all say goodbye
And if that’s what heavens made of
You know I, I ain’t afraid to die
Yea, if that’s what heavens made of
You know I, I ain’t afraid to die…
give MJ more *HUGS*
Get hugs of your own
The first song playing goes with the current update.
Each week, I will dedicate the song to someone or something,
The next 2 months will be dedicated to Christmas!
Don't Forget to
 
Journal
Sunday, November 30, 2008 11:34 AM CST Just a quick FYI: I have created a new caringbridge website, so you can be notified when I update if you so desire. So, if you don't see a new update, please check out
www.caringbridge.org/visit/mjpurk
Hi all:
I hope all of you had a great Thanksgiving. I did and I am resting today from celebrating too hard yesterday. Yes, we celebrated Thanksgiving and my Aunt Beth’s birthday yesterday (Friday).
So, what is new in my adventure called life… I did start a new website, so everyone can keep track of me in case I forget to send an email. You can follow along and get regular updates if you check the box on my new site. It will make it easier so if my computer eats my email update list again. So, anyway, you can go visit, www.caringbridge.org/visit/mjpurk . So click on the link, go see my new page, sign up for updates and sign the guestbook so I know you were there!
Brenda and I have been busy. Brenda has been making new fleece blankets for B4SMA and cleaning our apartment. I have been catching up on websites and staying caught up. Brenda and I have trouble doing nothing, so we seem to always be busy. LOL
Here are the pictures from Thanksgiving/Aunt Beth’s party: http://b4sma.shutterfly.com/5854 . I will add a link to the new website, so you can always check pictures too if I forget to mention it.
On the health front, my secretions are getting bad again. I will go a few days okay but as soon as I come off the heavy duty antibiotics, the secretions turn bad and very colorful once again. If I get up and off my humidifier, I do great, but 12 hours after going back on the humidifier, they all start up again and it is miserable for another day or so. UGH! I did drop off a sputum sample on Wednesday so hopefully, it will come back on Monday! I just wish this dang ole infection would go away!
Monday I am off to GJ’s to pick up Aunt Claudia and Uncle Jon to take them to the airport and run more errands. Off to send out blanket 610! Not much else to report on that note. Hope everyone has had a great Thanksgiving!
Sending prayers to all of those under the weather and to all my SMA Friends too (http://www.our-sma-angels.com/b4sma/prayers.htm )
Love and hugs:
MJ
Quote of the week:
Don't underestimate the value of Doing Nothing, of just going along, listening to all the things you can't hear, and not bothering. ~Pooh's Little Instruction Book, inspired by A.A. Milne
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