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!
Love,
Rhonda
SMA Mom to
JD Manuel - 17 years old - type I SMA!
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Thank you for your input! We appreciate your awareness in our personal blog! We would like to ask you to please get involved anyway you can! CURE SMA!
Thanks again,
Team JD