6 years

March 25th came and went, marking another year on the transplant list. That's 6 years now. 

I remember feeling so alone, even when my arms were full.

   

For 6 years I have waited. Waited for a change in my labs. For the pain to get worse. For the fluid to build up. For the jaundice to set in. For my body to shut down on me.

For 6 years I have worried. Worried that my life was gonna change in the blink of an eye. That my heart or kidneys would fail. That my boys would see though the forced smiles. That David would decide I was to much. That the people I want to care the most really don't. 

For 6 years I have tried. Tried to stay positive. To stay healthy. To push myself. To not let my illness run my life. To be honest with the boys about it. And to enjoy every day no matter what. 

For 6 years I have smiled. Smiled when the doctors tell me that I am not sick enough. When I see the fear in my sons eyes. When they ask questions I didn't know how to answer. When David asks me how I feel. When all I wanted to do was cry. 

For 6 years I have lived. And that in itself is enough to make this whole journey worth it all. I have been stable enough to be home and not in the hospital. I have been able kiss my boys good night. I have been a good part of the last 6 years. Yes its been hard but its also been full of so much good. 

In 6 years I have watched my babies grow up into great boys. I have had my best friend at my side, always pushing me but always knowing when I need a break too. The three of them have been my reason for getting up each day. My light. The reason for my smiles and my happiness.

In 6 years I have had people come into my life that have been nothing but full of love and support. They have driven me to the hospital and sat though appointments. They have fed the family when I was sick. They watch the boys so I can rest. They have become family I have been missing.

6 years ago I didn't see how amazing life still could be.  I was destructive and angry.  I almost threw it all away.  My marriage, my family, life.  I didn't want to be sick.  I didn't want to hurt any more.  But mostly, I didn't want them to see me that way.

My heart

6 years later and my heart is whole. David and the boys have been my anchor in this journey. They keep me from drifting back to the dark. They keep me laughing and smiling. They take care of me when I can't take care of myself. And I can't imagine a life with out them. Any life no matter how hard or scary it is, is worth it if it means being with them.

 

I recently had someone reach out because her husband was recently diagnosed and struggling. When I was first diagnosed I was lost. Drowning. Its so much to take in and being pregnant on top of it all made all my emotions and reactions that much more awful. The hardest part to swallow was trying to find someone like me.  And it took me a few years.

Even now, unlike almost all the people I know with Budd Chiari Syndrome, I am one of the few without a TIPS shunt. At the time, I felt like my entire life had been turned upside down, when really, this has been just another detour. Sure this journey I am on now is rougher, bumpier and scarier, but for every setback, I have been able to be that much more grateful for what I do have now.  It has opened my eyes to what could have been and what will be. Right now, even if just for today, I am going to be happy. I am going to love. I am going to live.

Happiness comes easier these days