Sometimes there are just no words to describe how I am feeling. All of my emotions are jumbled – I feel immense exhaustion, fear, and sadness. I continue my focus on the good that we have, because no matter how this ugly disease is and how it affects us I don’t know how I could live any other way…without my little girl.
A lot has happened since my last post, two more beautiful girls have been lost to Krabbe, Pheobe and Naéva. We were close to one of these little angels and often referred to her as Lauren’s best friend and soul sister. Naéva left this earth on February 23rd 2013 and is now watching us from above. She is free from the agonizing pain of the illness that plagues our baby girl, still she is missed so much.
I can’t even try to find words to describe how this precious girl’s passing has affected me. Although she suffered from the same disease as Lauren her passing was so sudden, too sudden! She became sick and left us within less than a week. Another reminder that time is too short and so precious.
Since Lauren’s diagnosis I can’t remember having felt any form of real excitement – everything always seemed fake. I would smile and laugh at jokes but it was never fully sincere. Meeting Naéva was like allowing rays of sunshine in, our daughter had a best friend. We made wonderful plans for the girls and found peace and love in every moment that the girls spent together. In a way losing Naéva felt like I had lost a piece of myself, my little Lauren had lost a sister.
Soon after Naéva’s passing Lauren came down with her first cold, well actually it was the Parainfluenza virus. We had to use a suction machine to help her through it as she couldn’t handle all the yuck that comes along with a virus on her own. For days Lauren would awake with fevers, she was very weak and wasn’t responding in the same manner that she normally did. One day I watched her lying on her bath chair, her eyes barely open and her body limp, she reminded me of a rag doll. Her perfect little body looked so weak…my heart sunk. Until this moment I don’t think I realized just how strong my baby girl actually was, because seeing her this way posed such a stark difference.
As her virus continued I could feel fear creeping in – I kept trying to brush it away as a small voice in the back of my mind kept asking “Could we be near the end too, are we ready for this?”. This little voice was my enemy, it was cruel and it made me face the tragedy that is waiting for us at the end of this disease. I wouldn’t listen, Lauren was still strong and I continued to help her fight this cold, no more negative thoughts. Steve and I lived on adrenaline for two weeks, and finally the storm passed and it passed as easily as it could. The virus ran its course without ever becoming critical, Lauren is now free from infection, we were blessed.
For the first few days following her illness, we were able to breathe easy. We were even awarded with some cute Lauren smiles, a miracle that she can still express happiness!
For the past four days, Lauren has begun crying a lot more. She is uncomfortable and stiff, her usual medication doesn’t seem to be working.
Tonight I posted this as my status on Facebook
Feeling worn and tired, and so sorry for my little one. Lauren has been crying almost all day and I hate not knowing how to console her. This disease wears on you in the cruelest of ways, once one hurdle is passed another arrives before you. We’re not sure if she teething or just irritable, and worst of all she can’t tell us. I am thankful for having her in my life, I pray that they find a way to kill this ugly disease.
I’m not sure why but re-reading the post made me feel worse. I feel terrible that I’m too tired stay upbeat, horrible that I don’t feel strong. I want a break but at the same time I don’t want to waste a moment apart from Lauren. I just want to hold her in peace, to hug her tight, to be able to comfort her. I want to be the warmth that makes her feel better. When everything I try fails, when holding her makes her cry, I feel like a failure.
I know that I shouldn’t feel this way and I am able to rationalize why – still I can’t help it.
I’m so sorry to end this post on such a low note, but to make up for it I will share some recent and cute pictures of our little girl.
Did you know that we offer daily updates and pictures of Lauren on Facebook? You can see her page by clicking here: https://www.facebook.com/Lifewithlol