Team JD Wristbands

Team JD Kids glow-in-the-dark awareness wristbands are in....

 We didn't get a chance back in August to do any fundraising for any one cause that we believe in so much! With these wristbands we hope to be able to do that now!

As most of you know we are trying to raise money for JD a new handicapped van. What better way to raise a little money towards his van fund then with awareness wristbands! But, we wanted to share this fundraiser with the other SMA kiddos as well. So we thought of MJ over at B4SMA ~ Blankets for SMA Kids. BECAUSE she has done so much for JD and for so many others, but when I approached MJ with this idea she suggested something a little different. MJ, being who she is and the heart that she has, wanted to forward these funds to Marshall's Miles in honor of B4SMA. How wonderful is she....Always thinking of others! You amaze me MJ! I am so honored to have you as my friend!   MJ's wish is my command!

Get your Team JD Kids glow-in-the-dark wristband now!
(while supplies last)
 Wristbands are available for a $5.00 donation/each.
$2.00 from each wristband will be donated to Marshall's Miles,
$2.00 from each wristband will be donated to JD's Van Fund and
$1.00 will be donated to MJ over at B4SMA.

You can use the PayPal link below or please message us if you would like to have a Team JD Kids wristband. We need your shipping address, so if you choose to use the PayPal link below please make sure you still message me or JD with your shipping address :
bubba@team-jd.com

If you would like to just donate to Marshall's Miles, or to MJ at B4SMA Kids or to JD's van fund, please see information below.

Again, we thank you for your support!
....keep dancing!!!!

JD and Rhonda

more information on each organization....

Marshall's Miles is a 501(c)3 organization dedicated to help find a cure for Spinal Muscular Atrophy and provide assistance to its victims and their families. Donations will be used to help fund necessary medical equipment and accessibility options to families who have been denied coverage by their health care insurance. A portion of our donations will be directed to supporting research so a cure can be found for this devastating condition. We support the efforts of other SMA organizations whenever possible and will work with them in fulfilling requests from families. We pride ourselves on improving the quality of life for people who are affected by SMA. Please visit their website to learn more! www.marshallsmiles.com. 

To make a donation, please mail your check to: 

Marshall's Miles

c/o Southbridge Savings Bank

86 Worcester Road,
Webster, MA 01570

Marshall's Miles

B4SMA is an organization devoted to sending blanket hugs to children (under 21) with Spinal Muscular Atrophy, also known as SMA, from around the world. Please visit their website to learn more! http://www.our-sma-angels.com/b4sma/
 Did you know that B4SMA has sent out over 1000 blanket hugs, worldwide in 8 years! Thank you MJ for all the hard work you do....YOU are TRULY Our "QUEEN of SMA". We Love you!

B4SMA

 MJ and Brenda would gladly accept any donations to help give blanket hugs to more kids.They accept the following types of kid friendly fabric:

Fleece, flannel, cotton prints, and finished blankets (crocheted, knitted, tied, and quilted)They also accept small, clean, stuffed animals and monetary donations. Monetary donation checks or money orders should be made out to MJ Purk with B4SMA in the memo line. (Please note that, as of right now, B4SMA is not a 501(c) 3 organization) You can also support B4SMA by shopping at their store - https://www.cafepress.com/b4sma

Contact B4SMA for information on how YOU can help SMA kids receive a blanket hug.

MJ is also the creator of B4SMA~Leg Blankets. Leg blankets start at $20.00/each. so don't forget to get over to her websites and check out all the work she has been doing for our kids and the SMA community. 

B4SMA Leg Blankets

To make a donation to JD's Van Fund, Please contact us.

JD's Journey ~ Dancing in the Rain ~ A tribute to my son!

A tribute to my son!

Make a video - it's fun, easy and free!
www.onetruemedia.com

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