MJ's Journal Page

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

Wednesday, November 5, 2008 5:44 PM CST

Hi everyone:
I am almost done with class for this quarter, only 2 days left of class for the quarter. Tuesday is a university holiday, so I have class tomorrow and then have a week off until next Thursday (major benefit of having class two days a week).
So, what have I been up to the past 10 days? Homework, homework and homework. That crunch is hitting and I have my 20 page paper due next Thursday, a 4 page paper due next Saturday and a 6 page paper due on the 18th, plus a test in 3 of my 4 classes left. Why must teachers put off all papers to the end of the quarter anyway?
I am almost done with my Cipro antibiotic. Did see Dr. Goyal on Monday and sounded good but now am coughing up tons of huge plugs again, let us hope it is the end of it. It is a never ending battle with my s. maltophilia infection, so who knows if it is really gone or still trying to kick my butt! Time will tell. I do see Dr. F on the 20th so we can figure it out then. The good thing is that I am no longer having those huge plugs that block my trach and make me turn bluish.
My presentation last Friday regarding disability and health care was a bomb. The conference was sponsored by Midmark (they make accessible health care exam tables) and they had 5 people there. That was the extent of the audience. Can you believe it, there were 5 people from MidMark, 2 from disability services, the lady from the Counsel of the Blind and Brenda and I. I was very disappointed since my whole presentation was talking to med students, nurses, and physicians on communicating with disabled people. No one from the medical field even knew about it, so that was frustrating. Maybe next year they will advertise and offer free food so people will show up!!!
October was an extremely busy month for B4SMA. We sent out 26 blankets in one month which is sad in the fact that the vast majority were newly diagnosed kids. Let us hope that a cure can come soon since more and more kids are being diagnosed. I’m not sure how many remember or even know. I was diagnosed early back before there was a test along with my sister Emma. Back then, in 1988, SMA was a rare disease and I did not really know of anyone else for many years. Today, 20 years later, doctors are still saying the same thing, that SMA is a rare disease and to take your kid home and love them until they die. It is sad that despite their being a blood test now and can be tested prenatally, having 3 specific medicines that slow the progression of SMA down, and all the research being done, most doctors – specialists especially, will tell you nothing except that your kid will die right away. Isn’t it amazing, that with SMA being a rare disease, we are 4 blankets short of 600 blankets in less than 5 years.
Enough about that, if you were wondering, yes I did vote this year, my first time ever for a president. All I will say about that, as to not start any big debates, is that I am glad that I will be able to live wherever I want to live. Rumor has it that last night on campus were some major parties, I guess I slept through them and that the police were called out many times.
My calendar fundraiser is going pretty well. I have sold 50 calendars thus far. Not too bad for the beginning of November. I hope to get lots more to make this an awesome fundraiser. (http://www.cafepress.com/b4sma/1826918 ). Remember, they make awesome holiday gifts. Also please continue to pray for all of my SMA Friends who are under the weather or are facing current challenges ( http://www.our-sma-angels.com/b4sma/prayers.htm )
Until after finals probably, love ya lots,
MJ
Quote of the week: Always continue the climb, it is possible for you to do whatever you choose, if you first get to know who you are and are willing to work with a power that is greater than ourselves to do it. ~Oprah~

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E-mail Author: TWEETYROLL88@aol.com