Hurricanes! First day of School and not really a good day!

Boy was today a bad day! My emotions run very high sometimes and the last 6-8 months I have been chalking it up to me going thru menopause. Is it to early for that?? I am turning 43 in November.

I don't know what the heck was running thru me today, but I just had so many ups and downs. One minute I'm proud of myself and the next minute I feel like I'm never going to accomplish anything.

Watching Hurricane Issac come ashore this morning sent the tears flowing with this mommy. Yesterday, I reminded my Maggie and my Mom, and told Nurse Heidi all about this day 7 years ago - Hurricane Katina! What a nightmare that was. That was a day I learned many lessons on how people act during a disaster. I felt very alone that day 7 years ago and today I felt that same loneliness.

.....topic of choice today....Hurricanes with a child on life support.

Living on the coast all my life...I grew up knowing all about hurricanes. OK, maybe not everything about hurricanes, but I do know to get the hell out of the way when one is upon us!

This morning, while watching Issac pounding on Louisiana and on the anniversary of Katina, it brought out all those feeling I had 7 years ago. Of course I didn't feel this way as a kid, having a storm approach us was something kinda exciting. And of course as a kid, I really didn't know what my parents went thru to make sure our property and lives were safe. As a kid you don't fully understand. But now that I am an adult, I have come to learn first hand the worry and stress my parents went thru making decisions that would effect the family.

My parents made decisions based on what resources they had and what they were capable of doing at the time of a storm approaching, as every other family does. I remember my mom telling me stories of when she was a child on Galveston Island and her family having to deal with Hurricanes Carla and Camille during the 1960's. As a teenager, again we never think about the outcome of after a storm! The devastation that families have to deal with. And as an adult I still don't want to think about it, but as an adult with a child on life support that lives on the coast, I have to deal with it! Luckily, only a few months out of the year.

I remember us running from Hurricane Allen in 1980 when I was a teenager and then three short years later in 1983 my dad saying, "I ran from the last one and it didn't hit us directly, so I'm not running from this one", (Hurricane Alicia) and then riding her out in Texas City at my grandparents house. Wow, what a night that was. The eye of the storm passed right over Texas City and there was this eery calm for about half an hour, then all hell broke lose again. Hurricane Alicia was an experience that I will never forget, but truthfully I don't remember much about the outcome and the stress my parents had to deal with. I do remember not having electricity for many many days afterwards and my mom's best friend and her family staying with us that whole time. When you are a kid you don't remember the clean-up, you just remember your mother telling you ..."Hell No, you are not getting in that water!!!" stay away from it and quite bothering me or I'm putting you to work with your dad.

Today was really going to be JD's first day back to school, so to say. Guess you can call us a "Home-school" household. JD has been thru 3 school districts around us, but after many years of ARD meetings and IEP's in place, this mom chooses to "Home-school" my "special needs" child. Everyday is constant learning for both him and I. He is a "special-needs" child. So you can say we are in school everyday! But to get back to the "formalities of school", that takes place in our living room with me hooking JD up (so to say) to whatever computer I can put in front of him. So after seeing all the pics on Facebook of all the kids going back to school, I tried to work JD up all weekend of him going back to "school". Back in the routine so to say. Today was that day, but things just don't go as you plan them all the time. ugh! I could not for the life of me get his eye-gaze in place for him to use it properly. After almost two hours of frustration, I lost it again! JD was also not having a good day with his pressures and sinus issues....having Hurricane Issac so close he was sure feeling it! He agreed to every breathing treatment today, poor guy! He is finally resting but his O2 sats. are still hanging around 90%.

So to get back to school, can you guess what today's lesson was about? You got it, Hurricanes and the weather! and how I don't want to run from another Hurricane, but I will be, if the time comes. So JD and I kinda put our "Hurricane Plan" in place. 

7 years ago we had decided to evacuate because of Hurricane Katina. But I did not have a plan in place and I didn't want to be alone, out with JD and not have anyone with me for back-up. I made plenty of wrong decisions thru out that ordeal and still regret putting my kids thru a 70hour horror story. 40 hours awake, 26 of those hours of straight driving. to make it up the road about an hour and half away from my home. Hard lessons on that trip, a real eye opener. During a disaster you come to find out exactly what people think of you and your child.

Then we faced Hurricane Ike just a mere few years ago, Sept. 15, 2008. Katina missed us head on, but Ike did not. Again I made decisions based on my resources and abilities at the time for myself and my children and we decided to stay and ride out Hurricane Ike. Hurricane Ike is the very last Hurricane I choose to ride out! It scared the wholly living hell out of me.The water rose so fast even if I wanted to get JD out of mother natures way, it was just to late. We were without electricity for 11 days. Talk about camping out! Our generator crapped out on us during Ike but luckily we had a back up from my dads job. Bless them! The devastation afterwards was just unreal, but we were so lucky!  To open your front door when the weather clears and see the devastation it left behind, you feel so lucky to have a front door to open. Hurricane Ike was another hard lesson to learn. I never want my kids to have to ride out another hurricane and as long as I'm alive they won't have to. 

Today was a day full of emotions.... frustration, sad, angry, overwhelmed and lonely.  I had a candle lit all day long for the victims that are in the path of Hurricane Issac. I sure hope there is no loss of life in the aftermath of this storm and I'm still praying we don't have to face another storm anytime soon! 

 As for JD and school, well... we will just have to try again tomorrow! This mama is wore out and in need of sleep!

JD's birthday adventure continues--part 2.

Part 2 of JD's Birthday Journey is a week late of course! We are an SMA family! Can't tell you how busy we have been since JD's birthday, but here it goes....

 So we headed back out again to dip our toes in the water on Tuesday following JD's birthday! What a great time we had!

JD absolutely Loved the Batman movie! and so did I. It was pretty darn good!

The whole adventure to Moody Gardens was a first for JD and we all had a Blast! I really don't know why we have never taken JD there before, but my best guess is because of the cost. The cost was absolutely outrageous. The money we spent for the weekend just about added up to as much as throwing the party for JD's birthday. But this time I didn't have to recruit people for clean up....lol. I know how much you guys love JD's parties and I know a bunch of you are disappointed in not partying with us this year. But don't worry, the year isn't up yet! Mag really wants to throw a Halloween party and as long as she does most of the work then we just might have one! Who would be up for a costume party??? I know JD would!

Back to JD's adventure...We had a smooth trip there and back and like I said earlier JD LOVED Batman: Dark Knight Rises. We did have the pulse/ox machine beep at us that the battery was dead, but I just plugged him in and used Moody Gardens electricity for the duration of the movie, sure hope they didn't mind. Another snag of course is always parking. When we drove into Moody I decided there must be a closer parking place than where we had parked on Saturday, so I drove right to the front. Low & behold a front row parking place. Except, there has always got to be an idiot in the bunch, don't you think?

We had enough space to unload JD from the car, but REALLY?? I just couldn't keep myself from not sharing with you guys.  ooohhh  ugh!    the little things that just piss you off!

All in all I think JD really had a wonderful birthday!

Now I need to take this time and thank everyone again for all the birthday well wishes JD received from all over the world, on the internet. I am forever grateful for you guys. Reading all of them to JD was a task that mama just couldn't handle at times, it was so overwhelming that I had to just step away and have a good cry. The encouragement, support and Love sent to my JD left me speechless (and that is usually hard to do)! I just can't thank you enough! Thank You! Many thanks also to everyone who sent JD birthday gifts. I again, am forever grateful! He received lots of money and all sorts of gifts and loves everyone of them! We love you guys and words can not express enough how much JD & I Thank YOU!!

 As some of you know we were collecting funds online for JD's birthday for him a new van! The grand total of what he collected online is $744.00 and with what he was handed, minus the money he wanted to spend on himself for things he wanted. He now has a grand total of  $1,404.00 saved for his new van.

Again, I am forever grateful for your generosity!

Sorry I don't have many pictures to share of our 2nd trip back to Moody Gardens, but Mag did manage to grab a few shots. Hope you Enjoyed JD's Birthday adventure as much as we did!

Rhonda

17 years.... We could have missed the Rain, but we would have missed the DANCE!

Wow, what a day Saturday was! It took us all day Sunday to recover!

We did have the time of our life and danced in our own sweat!
Boy was it Hot!  Hot as Texas!

JD had a wonderful time and enjoyed everything, even the crowds! As much as possible!

He does tend to stare back at people when they stare at him.  :-)

(I imagine him saying..."Keep staring I might do a trick")! I really should have let JD wear that shirt, created by our friend MJ "Queen of SMA".

I will not hold back on this blog post and tell you what a wonderfully fun filled day we had for JD's 17th birthday. The storm did rage at times. Don't get me wrong, JD HAD A BLAST and KEPT DANCING! I think the "Sharks 3D" was his favorite! He loved the theater and 3D glasses. I couldn't stand the glasses! But by the time we got to the theater, I was already wanting to kill a piece of equipment. So the glasses didn't stand a chance.

The equipment we carry for JD is his "Life Support". He can not leave home with out it. All in all it is just a couple machines......but do we get to leave the house with just a couple of machines? NO!!  I have to make sure we have a minimum TWO machines each and all the other crap that goes with the machines....and boy do we carry some crap! 

 The Rainforest was where we went first, the crowd was overwhelming for me and all they could do was stare at us.  I can not stand having JD in a crowd in such close quarters, it's a distraction from what we are really there to see and do. I think we might have run over a few toes in the Rainforest! Maybe the crowd was overwhelmed with us? I'm sure the look of JD and his entourage must have been overwhelming for them??  (insert sarcasm) The Rainforest was full of activity and JD enjoyed all the animals of course! I knew he would! The Anaconda was his favorite there and maybe the monkeys.

We left the Rainforest and headed to the Aquarium, but by the time we entered the door the pulse/ox battery was already dead, thus the 2nd machine. Randy made his way back to the car for the 2nd machine. uuugh!  which was the 2nd time to head back to get that machine because as we headed to Galveston down I-45 I realized I had forgot that machine back home on the charger. sooo Randy made his way back home to grab that machine. oh, double uuugh!!!

The Aquarium was wonderful, sharks are both my kids favorites! I so wanted JD to go thru the tunnel to see all the sharks swimming and he did. But what an experience that was...again I won't hold back.

 We waited politely at the entrance of the tunnel while it was filled with people. There is a small bench all thru the tunnel so people can stop and sit. So while waiting to get JD thru, people behind us started to pile up....so we tried to push thru as best as we could without running over anyone's toes. Kids are so wonderful...it's the parents that need a lesson on how to act in public. There happen to be a very nice lady that worked for Moody Gardens and was so happy to explain to JD all the different sharks that were in the tank. But it was hard to really hear her because of all the excited kids in the tunnel with JD. She got down right beside JD and talked to him on his level as a 17 year old. Him and her talked about sharks and not about the distractions all around! And boy did JD talk to her, every time she asked him if he could see the shark she was pointing out those big brown eyes would shoot up with a yes answer and you could just see her heart melting with love. And the look on JD's face was "Wow, I think I would rather look at you then the sharks". I think all the guys were watching the nice lady and not the sharks! I didn't get her name and we didn't get a pic of her, but I do want to thank her for her time she spent with JD. He really enjoyed her company! Our time was cut short with her because someone in the tunnel decided it was a nice place to pass gas! (Yes!, I said someone cut ass in the tunnel!) Some couldn't help but laugh and some were very offended. Needless to say it was time for us to move on.

Off to the theater we go..."Sharks 3D" awaits!
BUT, as soon as we got to our seats the vent 6 hour battery sprint pack dies! which means I have about an hour to find an electrical source or another battery back-up(back in the car).  uugh! So we take our chances and hope the battery last that full hour, so we can watch the 45 min show and head back to the car for battery exchange. It's now only 3:15pm and we are loosing battery juice left and right! Mama is needing a good stiff drink by now! Sharks 3D was Awesome and JD loved it! We can't wait to go back for another awesome show!
The trip back to the car was nothing you could ever imagine. The heat was unbearable and some a**hole decided he had to block the handicapped sidewalk so we had to drop JD off the curb to get to the car. I didn't get a pic of the a**holes truck, because I was so so mad, but of course JD was a good sport thru it all. Have you ever wished for someone to have a flat tire? Well, I have. The exchange of batteries was done but the weight on the chair was about 20 pounds extra with the 8 hour battery in place. Why can't they just make a 24 hour battery, it is "life support"!  oh, triple uuugh!!!
5pm:  next stop Palm Beach!

 Palm Beach was wonderful! But by the time we got settled in with a cold beer for mama, JD was exhausted and if we would have sat still he would have went to sleep. So off we go again. Did I mention how smooth that cold beer went down? lol Next stop was the Discovery Pyramid and Bodies Reveled. It was a very small exhibit but was very educational. Amazing things to see, but no pictures allowed. Needless to say, we all were not really up for any educational material to stick with us. Being a homeschooling mommy, I did try to make the best of it. Did you know that if the human body were to use every muscle in the body at the same time, the human body would be capable of lifting 2 Tons!?  Wow, I guess that's the only information that stuck with me....lol.
After the Discovery Pyramid we were trying to get to the Colonial Paddle-Boat to sail around Galveston Bay, but at 7:15 they were pulling off. Hated for JD to miss that, but we can't be in two places at once. Back to Palm Beach to enjoy Bands on the Sands for a little while longer and maybe the Fireworks show. Fireworks couldn't start quick enough, JD was done for the day.  His chair was getting to him. I made him hold out til after 8 pm so we could light our SMA Candle in honor of all our SMA Warriors and Angels.

  By 9pm still no fireworks...and by the look on his face (above), it was time to go! Packing up to get home is much easier then leaving. You throw everything in the car and worry about separating everything later. We were home, unloaded and JD in bed by 11:30pm.
Like I said earlier, it took us all day Sunday to recover. Talk about tired, we were!

What a day Saturday was!   I wouldn't change it for world!
I sure hope JD had the time of his life!

Think our birthday adventure was over? Think Not!

part 2 of JD's 17th birthday adventure continued thru Tuesday night when we went back to the IMAX 3D to watch Batman: Dark Knight

stay tuned part 2 coming soon!

Rhonda

all the pictures from that day can be found at these links...
 https://www.facebook.com/media/set/?set=a.462528343781201.101866655.100000721187568&type=3
and
https://www.facebook.com/media/set/?set=a.462669863767049.101866700.100000721187568&type=3

Celebration continues for JD's 17th birthday!

 The storm is SMA! and this is how JD "Dances in the Rain"!

Today we are packing back up and headed back out to Moody Gardens on Galveston Island to watch Batman: Dark Knight 3D.

I will share with you all about JD's trip on Saturday as soon as our partying is over! We are still celebrating! Things don't always go as planned, but that doesn't stop us from getting our toes wet. Our plans on Saturday didn't quite pan out the way I thought they would. It never does! But our adventure was remarkable and unforgettable! So therefor we must head back out into the storm! JD waits patiently for the Dark Knight and what a good sport he has been thru it all! Today we will continue celebrating JD's 17th birthday with as much excitement as we had on Saturday! 17 years is worth a few extra days of celebration! Don't you think?

Now let me say again how much I appreciate all of JD's birthday well wishes! You guys are awesome! JD loved reading every single one of them. 

Day 14 of SMA Awareness Month ~ Our Mission Continues to spread awareness! What are you doing to let people know about Spinal Muscular Atrophy?

I ask you to PLEASE Share JD's Journey with your family and friends!

AWARENESS MATTERS!!!

One tired mama,

Rhonda

I Love this picture!
Todd and JD at Moody Gardens Pyramids ~ Galveston, Texas.
It was a long day but, They had a Blast! 

the first bump in the "Storm"...Tomorrow is the big day!! Happy 17th Birthday JD!

HAPPY 17th BIRTHDAY  JD!

can you believe JD is 17 years old?

what a fighter!     I am so proud!

Trusting Our Journey!

 August 11, 1995

August 4, 2012

Tomorrow is the big day so we won't be online to check out all of JD's birthday wishes! I want to thank you, those that have sent well wishes and gifts to JD! I can't begin to tell you how much I appreciate it! I still CAN NOT believe my children are young adults now! Makes me feel old! But this old mama is sure proud today! Going to be a lazy day for us today, except that we have to get two cars ready for tomorrow and we are expecting the RT/ Respiratory Company here sometime today! other than that it has been ice cream for breakfast and the cartoon network! we also have a stack of movies ready to plug in to "veg-out". First up Transformers! and you can't fail with an old classic Jurassic Park!! Then maybe later tonight  - "We bought A Zoo" or Zookeeper! we haven't decided yet...lol.  

For those of you that have decided to join us out at Moody Gardens tomorrow, we can't wait! Some how I got things mixed up and didn't plan JD's big day well enough. The concert is the last concert of the season so they expect it to run over a bit. It will be the last Fireworks show of the season as well, all from 6pm -10pm. And the Dark Knight movie is only showing at 6:15pm and 9:15pm. So it was one or the other! Well that really sucks, because he so wants to see the Dark Knight! So mama fixed it as best I could! He won't miss anything! Tomorrow we will go as planned for the day and not miss the concert, except he will get an extra show at 3:15pm of "Sharks 3D". Then on Sunday we will go back at the scheduled 6:15 showing of the Dark Knight!  Wow two days of "Fun in the Sun" while JD "Dances in the Rain" for his 17th birthday!!

This mama needs plenty of rest for today!!!    :-)

 I would be forever grateful for your prayers of smooth sailing for the weekend while JD, Dances in the Rain!  We sure hope to see you out there! 

We will be back on line after all the Fun in the Sun with plenty of pictures! Please don't forget to light your candle at sunset tomorrow in Honor of SMA Warrior JD and all his Warrior SMA family along with Honoring all of the SMA Angels (JD's Family) that we have lost to this devastating disease called SPINAL MUSCULAR ATROPHY!

AWARENESS MATTERS!!!!

keep dancing!!!

Proud SMA Mom

Rhonda

Doctors Day! August 11th is almost here(JD's 17th Birthday!) Oh, and don't forget it's SMA AWAENESS MONTH!!!

 We have had a busy few months to say the least....

my little girl turned 20 years old. I still can't believe I'm that old!!

And on this Saturday my little boy will turn 17 years old!!

Wow, I am old!  

 JD's doctor visits went very well yesterday! We do go back in 6 weeks, because I have been trying to change up his diet a bit. So working with the dietician took most of our time. The clinic we take JD to is so awesome--they have moved off the island since Hurricane Ike. The new clinic has limited access in the front, so JD never has to wait. We pull into the back, take the elevator up, ring the bell and they let JD right in to his own room. Usually, seeing all the docs and familiar faces down the back hallway. Sure does make my life a whole lot easier. His appointment was at 11am and we were home by 1 o'clock with a Starbucks coffee in tow. Not a bad first half of the day.

 We are gearing up for the Big Birthday weekend, after today only 3 days left! JD will have his usual entourage (of course) and we have heard from a few more that they will see us there. With our new photographer (Maggie) on hand, we should have plenty of pictures to share of JD's Big Day while he  "Dances in the Rain". Sure hope to see You out there! If you missed all the info on JD's birthday then I will share it again for you...

 For those of you that were expecting to come and have a great time on JD's birthday with him-you still can.We will be taking JD to the Moody Garden Pyramids on Galveston Island on August 11th for his birthday! Moody Gardens Galveston Island / www.moodygardens.org/ . He has never been there, even tho we live so close. So we think it's time to go! JD will get to see "Batman: The Dark Night Rises" on the largest 3D screen in Texas, in the Discovery Museum he will get to see "Bodies Revealed" http://www.bodiesrevealed.com/, and hopefully we can get him on the Colonel Paddle-wheel Boat to sail around Galveston Bay. He will also get to visit the Aquarium Pyramid and the Rainforest. Bands on the Sand planned for that night at 6pm and a Fireworks show afterwards. I will be bringing our candles to light and spreading awareness to whom ever we meet on JD's big day! I'm thinking, what a great way for JD to spend his 17th birthday! If you would like to see JD on his birthday and help him celebrate, then we will meet you out there! more info here at this link....
(Please share)...
jdsmajourney.blogspot.com/2012/07/jds-birthday-august-11th.html

We also want to remind you to please light a candle in honor of all our SMA warriors and angels on August 11th at 8pm for National SMA Awareness Month / International SMA Awareness Month Candle Lighting....
YOU are invited>>>

Please do this in honor of the warriors and angels of SMA... join families & friends by lighting a candle at sunset to remember those SMA Angels who have lost their battle with SMA and to honor those SMA Warriors who are fighting everyday. As this event continues to grow we hope to bring awareness about SMA and also unity to the families living with it as we join spreading the light of our candles around the world. We hope you will join us by lighting your candle for SMA families everywhere. Just light a candle from wherever you are at this time. Please feel free to post a picture of your family participating in this event right here at...https://www.facebook.com/events/408856465837949/ Public Event · By SMA Mom-Susan A. (so a video can be made by Brenda & MJ (B4SMA) and/or www.facebook.com/familiesofsma

Today is day 8 of SMA Awareness Month so PLEASE Get Involved One Way or Another!:  below you will find a group of "AMAZING" Kids with links to their websites! Click on their links! Share them! Spread the word!

They Stand Together to Move Forward!

...and if you could find it in your heart to help any of them "Dance in the Rain" every once in awhile, I would be forever grateful!

August National SMA Awareness Month:

for the month of August watch JD's website and learn where you can help out the most!   www.team-jd.com

SMA Awareness & Groundbreaking Research:

 

B4SMA ~ Blankets for Spinal Muscular Atrophy Kids-

http://www.our-sma-angels.com/b4sma/ ,  http://www.zazzle.com/b4sma_kids

Miracle for Madison & Friends ~ Fight Cure SMA-

 http://www.miracleformadison.org/ ,  http://www.zazzle.com/miracleformadison,

SMA it Forward with Cashel-  http://www.smaitforward.com/

Marshall's Miles-   http://marshallsmiles.com/

Sophia's Cure Foundation-  http://www.sophiascure.org/

Avery's Bucket List-  http://averycan.blogspot.com/

Getty Owl Foundation-  http://gettyowl.org/

Hope for SMA-  http://www.hopeforsma.org/

Team Ben Charity-  http://www.team-ben.org/

Fight SMA- http://www.fightsma.org/

Emerson's Hope Foundation-  http://home.emersonshope.org/

Families of SMA-  www.curesma.org

SMA Space-  www.smaspace.com 

Jadon's Hope Foundation-  http://jadonshope.wordpress.com/2012/07/23/dance-in-the-rain/

Team JD Kids Foundation-   www.team-jd.com

We Need YOU right now: www.team-jd.com/events.html

I can't thank you enough for celebrating JD's birthday with us again this year!

Rhonda

Our SMA Family~JD's Birthday~Abilities Expo~Oh, and don't forget it's SMA AWARENESS MONTH!

"Dancing in the Rain"

"JD @ The Astrodome 

"known as the 8th Wonder of the World"

What an adventurous day yesterday was!

It could not have been any more Perfect for "Dancing in the Rain"! 

We set out to the Abilities Expo at the Reliant Center in Houston and JD couldn't enjoy the ride enough....

What a wonderful time we had, saw some old friends and met a few new ones along the way! JD can't wait to do it again next year! Way cool stuff they have there! Fell in love with all the cool vans we got to roll JD up into! Wish I could have just drove him home in one! LOL Anyway, we are doing our research and hopefully JD will be in his own van one day soon! 

Tuesday we will head to JD's yearly check-up with the docs! Not our favorite thing to do, but it has to be done! And then Saturday JD will be celebrating his 17th Birthday! WooooHoooo! Even as I write those words today I still can't believe it! My guy is such a fighter and I am so proud of him!

Take that SMA! 

When we got home last night I was excited to write something up and share with our family and friends, but when I got on the internet and started to catch up on every bodies day I realized there was an uproar in the SMA community again. Which really puts a damper on the end of the day. It just breaks my heart to see the SMA community break down and separate when we are all working on the same goal! The Cure! Only time will let you know, who you can trust in your life and who you can't! I do know and have seen with my own eyes that when we stick together things get done! When we stick together, we are a force that is unstoppable!  When we stick together "Our Kids" benefit!

Being a part of the SMA community for 17 years now I consider all of them my family and as you know, most of the time most families don't agree on everything! Especially money! I hate the fact that everything boils down to the money! Money truly is the root of all evil! We as an "SMA family" have collectively brought in the money that has been poured into research! Not just one person and not just one child! I do not know if there will be a cure in JD's life time, because as a parent I don't have time to sit in front of a computer all day long to do the research myself! We as a community rely on the proactive parents that do have that time and we trust them to share accurate info with us. When trust is broken and bully-ING takes place to strong hold money, that's when separation comes in and the community is left wondering who to trust. That Sucks for all of us and especially the KIDS! I don't want my SMA kid in the middle of a "deleting match" on FaceBook. Especially in his birthday week - in the middle of SMA AWARENESS Month. JD loves all of his SMA buddies and they do not deserve to listen to all of the political crap that goes on with all of the money that WE collect! I will continue to trust who I trust and YOU continue to trust who you want to trust, that is all we can do as a community! Put your money where you think you need to put it and I will put my money where I think I need to put it! If you don't agree with me then that is just fine and if you choose to delete me or my son from your friends list on FaceBook, then that's just fine too! We are not here to please everyone and I won't mind if you leave!

JD and I have been waiting on "THE CURE" for 17 years now and like I said earlier, I DO NOT know if there will be a Cure in his life time....but in the last 17 years we have met some wonderful friends (family) along the way! We will continue to support the kids and the needs of the kids today!

To me nothing matters more then the Kids! We can't afford to "Not" stick together! Our Kids Can't Afford It! I know that as individual families we are all fighting for our kids to have the best life possible while living with SMA  and "WHILE WAITING FOR THE CURE". I hope one day we will all be able to come together again and realize this is just another "proverbial storm" that we TOGETHER over-came!

I will not continue to ask my family and friends to pour their money into any organization/fundraising/charity supporting any form of research funding! We will continue to try to give you the latest and up to date information we can find about Research in the community. The kids need things today and we all need help with getting those things, some of us a little more then others! I hope to be able to bring us together and let people know about what our kids need today and not just about the research for tomorrow! I know that this will get me deleted from some of the SMA community who think they have "control" over them being a part of  "A CURE for SMA"!

I am tired of pouring our money into something they say is coming soon, but when "soon" gets here, there will be another road block and more money to be had!

Which brings me right back to "Dancing in the Rain"!  The Storm is SMA! and this is how TEAM JD will be dancing in the rain.

Please watch  TEAM JD KIDS FOUNDATION at www.team-jd.com for BIG CHANGES TO COME! and I encourage you to put your money where you feel it needs to be!

I hope you enjoy the rest of the pictures of our SMA family "dancing in the Rain". 

 

These are just some of the pictures we got of yesterday, if you would like to see more then please follow the link here...https://www.facebook.com/media/set/?set=a.460185544015481.101865941.100000721187568&type=3

And please don't forget about JD's birthday coming up next week. If you would like to join us for a day in the sun while we Dance in the Rain, then we will see you out at Moody Gardens. You can read all about that over here at this link...http://jdsmajourney.blogspot.com/2012/07/jds-birthday-august-11th.html

This will conclude Day 4 and 5 of SMA AWARENESS MONTH!
Love,
Rhonda 
SMA Mom to
JD Manuel - 17 years old - type I SMA!