As "THE DATE" Approaches...

In the Addison's community I see some who celebrate their Add-iversary. If we were to celebrate it, it would be tomorrow. December 14, 2015 was the day we got answers, the day we had a name and a treatment for what was causing our son to be so sick. We acknowledge that date - we talk about it, and the week before this mom lives out all the memories of the day and leading up to the day in her heart and her mind. Maybe we would celebrate it if he was really living out life and I felt like it was a new beginning. But for him (and us) that new beginning was just the beginning of a lot of new struggles and so that day is a day of so many mixed feelings. Of course, I am beyond grateful that we got a diagnosis and one with a treatment and our boy's life was saved. But then I look at how life has spiraled since then, and my heart breaks all over again. For us it is a day that draws a line in the sand between life before and life after.

Before our son was a smart kid with friends, who was silly and made people laugh. He enjoyed being outside and interacting with those his age. Now he has a hard time building relationships because of the hurt and pain that has come from having relationships that have fallen apart in the last nine years. The silliness that marked his personality for years is long gone. Every now and then, I do get a like scarcastic funny comment out of him - it is not that carefree, fun that he used to live with. One of the defining characteristics of him physically to me had always been his smile. From his first smile, it was with his whole face, not just his mouth, but he was the kid whose smile lit up those around him and you could tell a genuine smile because he just lit up completely. That smile has long since faded...I miss seeing it, I miss being the one who could bring it out even on the lowest of days.

This kid was one with passion and drive. One of my Facebook memories is him practicing juggling a soccer ball. That means kicking the ball up in the air to yourself without letting it hit the ground. This boy - he was trying and trying and had me out there to video him, as he had a number he wanted to beat in his head (or maybe a coach had set a goal, I don't remember). Anyways, I love when that memory comes up because you see his first couple of tries and how he juggles a few times and keeps trying....And then, he tries again and this time he just keeps it going. He must be counting in his head, because at a certain point that smile I mentinoed above breaks across his face as he continues to juggle. Had he not hit that goal then, he would have been out there all afternoon until he did. As, his physical health was getting worse and his time on the field was facing away he would ask me to drive him to the field an hour before practice just to have time to work on his skill, he would ask me to take him back after a long practice when no one would be there, no one would know. He just wanted to hone in on his skill and make himself better. Little did we all know he was fighting a battle within his body...Soccer was his passion...today there is little to get him out of bed for.

I love this kid with all my heart and I wear my heart on my sleeve. He looks at the world in a way I often wish I could. Some would say he only sees things in black and white - and some may include his mom at times. But after all he has been through I think it is something that helps and protects him. When you take out the gray in this world it is much easier to differentiate between good and bad, safe and dangerous, healthy and unhealthy. As his mom, I tend to live in the gray areas, and to be honest, I try to see the best in everyone which can make some things much harder in life. His mind has made this much more cut and dry. I do not think he was always this way - I think it is a result of all he has been through and a response to the world as he sees it.

As the anniversary of his diagnosis will be hear when I get out of bed tomorrow, I will remind him that it is "that" day - it is how we have always referred to it. I will remind him of how sick he was and how thankful I am for a diagnosis, but even more for a diagnosis that has a treatment for Addison's Disease. I will hug him tight (another thing that does not happen often as he tends to shy away from touch). I will remind him everything that I now do I started doing for him and he is still at the heart of it all. I will shed a few tears in there - tears of grief for all that we lost that day that we will never get back, for the future that he could have had. I will also shed tears of gratitude for the angels that have stepped in - including the doctor that admitted us that day and told me of his wife having Addison's and living a full life and many others who have a positive impact on our lives since that day. And then, I will pull up my bootstraps and get to work to make the world a better place for all who are fighting this rare disease battle no matter where they are on their journey.