JD's Mom ~ Rhonda

 "Quality of Life", Bucket Lists, Mother's Day, meeting JD and his Crazy, Loud mother!

First let me just say Thank You for joining us. And secondly, Happy Belated Mother's Day, I hope your day was filled with everything you cherish in life! Not all mother's around this world celebrated Mother's Day as most did....filled with gifts and flowers and a nice steak dinner. Some were filled with overwhelming grief of losing her baby on mother's day. Yes, SMA has taking another beautiful baby from this earth! And on Mother's Day of all days! I spent a small part of Mother's Day crying for this mother and her child that had just died on such a wonderful day. As I spend right now writing about it, I still cry. As a matter of a fact I have been sitting and crying a lot lately. It was hard to decide weather I wanted to share our journey with this nasty world.

Our SMA community on the web that JD and I look to for support and guidance is a small community trying to make a big name for Spinal Muscular Atrophy. Sure they all know JD and I, we are the pretty quite ones in the background helping in anyway we can in fundraising for the kids, fundraising for a CURE! In the last month there have been 2 babies in our area that have been diagnosed with SMA. I am sure many of you know one of them just by her name, Avery. Just as I am sure not many of you know the second baby at all! Well, JD and I know him and his name is Lil T. We have never met them in person even tho just a few mile separate us! They are apart of our family now! Now, why would one babies name over the other seem to be the face of a disease that affects them both? Why would one babies face go viral in our local community and not the other? Both of these babies are two of the most beautiful babies I have ever laid eyes on! So who gets to choose who the face of SMA should be? I don't know either.

But I do know, it pissed me off. I might seem like the quite mom on the web just taking care of JD, but in person I'm that Load Mommy who does NOT take no for an answer! I have had to fight and "buck up" all of JD's life, on my own. JD and I have never had anyone to stand with us! Him and I stand together to move forward and we have a few family members who help us stay strong by standing behind us and believing in us! But JD and I have had to face the reality of someones way of thinking that just because you are on life support you should just die. and the cold hard truth of it is I really didn't want to relive all those angry feeling I have towards UN-educated people. But after reliving it in my own mind again, getting so angry all over again and then just crying about it. I decided JD's JOURNEY is so worth telling! 

   But then I thought, JD is 16 years old now, what does he think? Does he want his story to be told? Even if some people don't agree with the way we live. So I asked him what he thought about putting up a web site all about him. We could let the world know that just because your different from everyone else on the outside, You are Still You and you have to trust the journey you are on.

Everyone's journey is different, there are no two journeys alike! Everyone's journey needs to be shared!  I explained to JD that his journey needed to be shared, his journey is worth sharing, it was something that he was born to do!

Life is so unpredictable and it's Not always beautiful! Some of us are born into less complicated lives then others. Some are born to change the world! JD was born into a very complicated life that is destine to change the world! Our journey together began on Aug 11, 1995 at 2:03 pm....JD came into this world at a whooping 8lbs, 7oz. The moment I laid eyes on him, I knew he was destine to change someone's world.

I didn't know he was going to begin with me!

 As I started to pull out old pics of him and Mag when they were little he kinda started to get excited (about the website), because he does love looking at himself. lol I explained to him what a "bucket list" was. That was the first we had ever discussed death in such a manner, as if you were dying right then and there. As I read to him all of Avery's accomplishment on her "bucket list" we started to get a little jealous. She was getting to do things any teenaged boy would love to do, (like throwing out the first pitch at a baseball game)! Again I cried for JD, because I could never give him something like that! He was born to just have a single parent take care of him along side his sister. Which doesn't make for a very financially secure future even if you were "healthy"!

I have always told JD that we should all get to live like we were dying everyday, because the truth is, we are all dying! There is no expiration date on your journey but your journey will expire!

Then I explained to him that we should be so happy for Avery that she was getting to do those things! She was born to spread AWARENESS about SMA, she was born with a shorter journey here on earth so her destiny was to reach as many in the world as she could, she was born to change the world. And she did! As JD and I witnessed history in the making, in the SMA community for the first time in the last 16 and half years all because of one little girl being born with SMA at the right time to the right family, the SMA community began to fall apart and didn't come together as a whole. We as parents were thrown back into the reality of that big question! What kind of "Quality of Life" Will Your Child Have??

As a few days went by the SMA community began to know what Avery's destiny was! Then the split began! YES we all as parents and as a community want the number one thing on the "bucket list", THE CURE! But that takes money, lots of money! and boy did Avery ever bring in the money!!! there is a campaign going on right now in her Honor that will bring a million dollars to funding a CURE! what great strides she has made! I am in awe!  and in the mean time where are "Our Kids"?    Living Like They Were Dying!

So as the world watched and helped this one little girl fill her bucket list as she was dying, she was gone and we all mourned for her and her loving parents! I cried and thought about them all day! We as parents all lost a daughter that day! Avery made the biggest impact in the SMA community that I have ever witnessed in the last 16 years! I Love Her! She will never be forgotten by me or the SMA community or the millions of people she touched!

Back to the cold hard truth of life we all go! Back to that big question! Does one child have better "Quality of Life" then the next child? Guess that question is what has really brought JD and I back out in the public eye on the web. Like I said before There are NO Two Journey's Alike! There is Not one human on the face of this earth that need judge another's "Quality of Life"!

So with that said, I would like to introduce you to my son JD. Again. He was diagnosed at 2 months old with Hydrocephalus. Doctors told me he would be just fine with a shunt placement. He could live a full life and still do things like play baseball, but not football! Then at 5 months he was diagnosed with Spinal Muscular Atrophy type I and they told me that he was going to die before he was 2 years old. His big brown eyes told me something different! He told me that he is viable! He could make a difference in this world if we just gave life a chance! My son is a healthy 16 year old that is going to be 17 in August. He lives with Hydrocephalus and SMA everyday, but he doesn't let that stop him in life! He too has a "bucket list" along side his friends that live with Hydro and SMA everyday. So in order to launch his journey here on the web we had to make something Viable come from it. We want to be here to help fill "Bucket Lists" dreams.

Those dreams will take lots of money to fill of course, money that this single parent just does not have! But I do have a voice, a loud voice for that matter! ;-)  and I can help the kids have a voice, I can help advocate, I can ask, I can beg for funding to fill those dreams! And that's what we are doing now! I am working on JD's nonprofit 501(c)(3) public charity tax exemption status for Team JD Kids Foundation! The Foundation will be here for the kids, all money collected will go to a special child with a bucket list dream! I encourage you to get involved, spread the word and help us go viral. If one little baby can reach a million people, think about all of us working together how many people we can reach! I hate the fact that we are going to have so many bucket list dreams to fill so we will also continue to encourage you to take part in Finding a CURE! That is the #1 "Bucket List" Dream of all of us! So as a mother of a child that is dying and has been dying for last 15 and half years now, I'm begging you to please share JD's Journey. And please step up to help in anyway you can. 

I do still realize that people will always still be split on what "Quality of Life" should mean to everyone, but that is not going to stop me from sharing JD's Journey. Like I said, it is a Journey worth Sharing. Just as yours! I'm trusting Mine and JD's Continued Journey Together and I'm Sharing it with You!

Trust Your Journey and Share it with US!

Before I leave you with this long blog post (so sorry) which is really my first ever, I want to share another (small PUSH) for me to share JD's Journey with you guys. Even tho I have a very Load voice (that's what my family tells me) I know some of you still couldn't here me. I want to Thank my dear friend Wyndie for dropping this little note to me at the very right time to just give me that little extra push. Thank you Wyndie for reminding me of how LOUD My VOICE IS!  lol

I Love You Too Girl!

from Wyndie:

I have had a hard time trying to decide if I wanted to truly say this to you or not and decided I did and do.

I watched this video this morning (which is posted on my wall) the words that were spoken were so loud! It reminded me of you and a conversation we had about your ex-family.

Even though my heart aches so much for the families of children with disabilities, due to the every day struggles you certainly face, I was reminded that a mothers love is totally unconditional. And that God will bring us through it if He brings us to it. And that he chooses special people to take care of his special angels!

Rhonda Spain, again thank you for your loudly silent inspiration. Love ya girl!

...the video she is referring to needs to be shared as well, please go here to see video -

http://www.godvine.com/Mother-s-Inspiring-Video-About-her-Blind-Baby-Boy-1484.html






Thanks again for joining US on OUR Journey!
Rhonda - the Crazy Loud Mommy