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Trevor and Ross Joiner are the sons of Joe and Janet Joiner. Both boys were diagnosed with Metachromatic Leukodystrophy, or MLD, on November 20, 2003. They both received stem cell transplants at Duke University Hospital on December 31, 2003.
Sadly, Ross David Joiner lost his battle due to complications from the transplant on February 28, 2004. He is forever an angel at 2 years 5 months and 8 days.
Due to failure of the first transplant to engraft, Trevor underwent a second transplant on February 24, 2004. This engraftment also failed.
Trevor Lee Joiner joined his baby brother in the kingdom of Heaven on October 4, 2004. He is also forever an angel at 8 years 2 months and 7 days.
Journal
Tuesday, June 10, 2008 5:36 PM CDT Well – A new posting – After 2 years….
This might be a little lengthy and crazy – but it gets better toward the end……
In my last entry back in 2006, we announced that we were pregnant and were so excited. Well, for those of you that do not already know, I had a rather complicated pregnancy that caused me to deliver at 27 weeks gestation. Brody Ryan Joiner was born late at night on September 5th, 2006 and he passed away the following morning. He was just too little and did not have the lung development to support his life. Needless to say, it was rather devastating and I was not sure that we would find our way out of it. I sat in that room in the hospital still groggy from the delivery and let yet another son go. You just can’t help but wonder how much a person can endure. But then I think of the boys and what they went through and what they endured. And all the other parents of children that have been through this horror and still walk it every single hour of every single day.
Well – as I have come to learn all too well, time has a way of marching on, whether you want it to or not. The Earth spins and the seasons change and truthfully, it still pisses me off. It makes me so mad that summer comes every year! Trevor is supposed to have his 12th birthday this year! Ross should be 6 RIGHT NOW! Brody should be in my arms and not laying with his big brothers waiting for us to join them someday. These are the sort of hysterical thoughts that run through my mind on occasion. Then I step back and remember the promises that I made. I promised all our boys that we would be fine. I promised them that we would never ever forget them, but that we would try to find a little joy and happiness, even knowing that it would always be tempered with sadness.
The thing is, while I have not always succeeded, I always try to keep a promise. So, yet again with the help of Modern Medicine, we became pregnant in early summer of 2007. We knew this would be met with trepidation from some and great excitement from others, so we just sort of decided to keep it on the low down until we felt we were in a safe zone to make an announcement. Because of the complications with baby Brody, we were a little more cautious with this pregnancy and I was monitored pretty closely. We made our announcement when we pretty much could not hide it anymore. Then, on December 2nd, my water broke at just 28 weeks gestation. I stayed in the hospital another 4 weeks and delivered a little baby boy on December 28th. Born almost 2 months early and weighing in at 4lbs and 8 oz, he was exactly twice the size of Brody who weighed just 2 lbs and 4 oz.
He is a beautiful baby today – he weighs almost 16 lbs and pretty much can no longer be classified as a Preemie. He looks A LOT like Trevor and acts A LOT like Ross, aka The Bull. He smiles, cries, giggles and screams all day. He has big beautiful blue eyes and his daddy’s big hands. I can tell you that he has stuffed our house with every possible baby gadget there is. I can tell you that he has filled our hearts with so much pure joy that it is truly indescribable. I can tell you that those moments of joy can be followed by a moment of pure sadness that will rock you back to your core. Memories flash back and it hurts. Some day, I am going to tell him lots of stories and show him lots of pictures of boys that he will never meet on this earth. I am going to tell him that his big brothers were amazing little boys and that we loved them. Then I am going to make sure that he understands that we do not want him to be defined as Trevor and Ross’s little brother and by what happened to them. We want him to just be a happy boy and we will raise him just like we were raising Trevor and Ross. We want him to know that we love him not because he is their little brother, but because he is his own little growing person.
Because we want all this for him, this will be the final post from Joiner Country. I will leave the site up for a while so that families new to MLD might stumble across it. We wish to go about our lives with our baby boy and try to build a life for him. There are still many things that we have to come to terms with. I am not sure that I believe that what happened was God’s Will, as some like to say. I am not sure that I believe in the whole concept of “Believe it and you will Receive it” or “God will not give you more that you can handle” and all those other cute little catch phrases that you see on various needle points around the craft bazaars. I do, however, without a doubt believe in the true miracle of life. I do believe that I will see ALL our Boys again someday. I do believe that I will understand someday. I believe that when I look into the big blue eyes of our son, that for the fourth time, we have been given something special and I will not squander or question it. I will simply give Thanks to Him. It is just all that I have to give right now.
I make it sound a little like we have been miserable for these last 4 years and truthfully, we have not. We have managed to eek out a life. While it is so much different than pre-2004, it is a good life. We both have great careers and jobs that we actually like. We have great family and a very tight group of friends that will circle the wagons within a moment’s notice. We bought a boat and spend the weekends on the water at a nearby lake. We will be breaking ground on a new house hopefully by August. We finally took that trip back to Mexico. Neither of us care for the birthdays and going home anniversaries and the holidays will always be hard. We will always be sad and grief is just part of our fabric now. But we laugh as often as we can and feel less guilty about it every day.
When I write, I do it from my perspective, so I do not talk much about Joe. I do this mainly because he and I generally feel the same way about things. It is one of the uncanny attributes of our union. Without a doubt, we have had some rough patches and we knew after 2004 that the odds were stacked against us. We chose to fight through that and there were times that I was not sure that we would make it. Somewhere in all this, we did make it. Still to this day, I wholly and completely love him with every bit of my heart. To be really cliché, I can only hope that he feels a fraction for me of what I feel for him. I can honestly tell you that the light that I see in his eyes when he looks at his son almost makes my knees buckle. I was afraid that light was lost forever. Truett Boone Joiner has brought it back.
One last thing – in April, there was a press release regarding the FDA’s granting Orphan Drug status to a drug called Metazym. This drug is being tested as an enzyme replacement for MLD patients. I remember specifically stating back in late 2003 when we were diagnosed and I was reading everything that I could get my hands on, that in 5 years there will be great progress and they will get this dreadful thing figured out. While they are not there yet, they are getting closer every day. Another Modern Miracle? You bet.
Many Thanks to all – Goodbye from Texas,
Joe, Janet and Truett Boone Joiner
Angel Trevor Lee Joiner – 7/27/96-10/4/04
Angel Ross David Joiner – 9/20/01-2/28/04
Angel Brody Ryan Joiner – 9/5/06-9/6/06
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