To my sweet baby girl, Maddilyn:
It’s hard to believe that it was almost two years ago that we started on this whole journey. I look back on it now, and it doesn’t seem real. I sometimes get these moments when things are quiet, or when I’m watching you work on school work, dance, or just play where I can feel all the fear, anxiety, and grief that this diagnosis brought to our life. I hope you never saw how dark of a time that was for Daddy and me. We tried so very hard to insulate you from the fear we felt. It feels unreal that we are getting ready to start year three. Year two was tough, love. We had a scare, but you made it through. I am so proud of you. It seems like a silly thing to be proud of, but you never complain. You always find a way to show care and affection for others, even when you don’t feel good. You deal, because you have no choice to. Honestly honey, you deal better than me sometimes. You amaze me Maddilyn. Watching you grow despite these struggles over the last two years, into a beautiful, kind, loving little girl, has been absolutely amazing. You are so incredibly strong and resilient. When I watched you on stage last Sunday during Children’s Sunday, it was such a beautiful moment for me. I watched you conquer your anxiety, stand tall, and sing your heart out. You were so proud of yourself, and I was so proud of you. Hard to believe that two years ago that Encephalitis had such a grip on you, that you couldn’t get up on that stage; but you did it baby! You made it!
I take my job as your mom really serious, if you haven’t figured that out by now. I love you so much, I don’t think I could even put it into words. The thought of being without you is just too much to bare. The scare of almost loosing you was enough to shake me to my core. I promise you, I have questioned everything about how we live our life. As your Mom, I’ve done a lot of growing and a lot of self-reflection over these last two years. I have spent a lot of time grieving the life we lost, and the life I thought you lost. I was so distracted by lamenting over what you didn’t have any more, that I failed to see the gift that we were given as a family. I would never wish for you to have Autoimmune Encephalitis, but I’m thankful for this journey that we have all walked together. I am thankful for all the changes it has brought to our life, even if some of them were not what I wanted. I am thankful for how these challenges will shape you, and help you grow up to be a beautiful woman. I am thankful for how this journey has changed me and Daddy as your parents. I’m thankful for the people that we’ve met through this journey, and the opportunities we have been give to love others through this disease. I find that year two instilled a great sense of thankfulness that I’m not sure would have been there before.
Year two was hard, but it was great. You have kicked Autoimmune Encephalitis’s butt. You finished first grade. You learned how to read. You danced your heart out in ballet. We had the most amazing trip to Disney World, and you were pampered by the Make-A-Wish Foundation. You had your first sleepover with your friends. You had your first crush. You laughed; you cried. You worked hard, and continue to do so.
So, going into year three, I no longer fear this diagnosis. I no longer feel anxious and worried over what your future health will be like. I’m thankful for you, our family, and all the wonderful people in our community.
I can’t wait to see you continue to grow this year.
I love you forever and ever,