In a lot of ways May 18th is the death of our old life. It is the day that all of our lives irrevocably changed. It is the day life plans were altered and driven off course.
May 18th also marks our rebirth. For although the life we knew was gone there was a new life waiting for us to grab on to. A life full of Hope.
I almost forgot that tomorrow was the day. There is a flurry of activity in our house right now, and time seems to be slipping through my hands. It was Sarah who came to me this afternoon and said, "Mama, tomorrow is four years. Tomorrow I will have been blind for four years."
It was silly of me to think that she would forget what day it was as well. Although all of our lives were altered significantly when she first became sick it is, of course, Sarah's life that was the most affected.
As time goes on, I have less days where that literal heart ache stops me in my tracks. I cannot tell you the last time I had to rub my hand over my heart to try and keep the hurt away. That doesn't mean that it doesn't hurt anymore because that would be a lie. And that doesn't mean that I have gotten over what we been through these last four years. What she has been through. I think anyone who tells you that you'll get over grief has never felt its sting. You don't get over it. It becomes a part of you, and you learn to live with it. Some of us live with grief better than others. Some of us wear our battle scars on the outside while others of us wear them on the inside so that no one can see them.
But that doesn't mean that grief is going to take over my life or any of our lives. Because it isn't.
Sarah is doing amazing things. Her siblings are doing amazing things and learning amazing things because they have the gift of having an abled differently sister.
There are times when I wish so desperately that Sarah could see. In these last (almost) 3 years we have lived more life and experienced more cool things as a family than in the combined 14 years prior to that (which is when we first became parents). I wish that she could see all of things that she inspired us to do. I Hope someday she will.
Sarah's disease, in some ways, is a gift. She has inspired so many people. Because of her we have done so many, many cool things. We have been so many cool places. We have met so many amazing people. Her disease was a wake up call that told us that health is not guaranteed. Life is not guaranteed.
Being blind is not the end of the world. Do me a favor? Set a timer for 30 minutes and close your eyes and pretend to be blind. Try to go to the bathroom, make your bed, pick out your clothes, get dressed, make yourself some food. It's hard. I've tried it. This is Sarah's every day life. No, being blind is not the end of the world, but it sure can be hard. And she rocks it almost every day. (Although blindness is her main symptom she does struggle with fatigue, numbness in her left leg below the knee, and some cognitive issues.Her lack of vision is what most affects her, but is not the only thing part of her body that this disease has taken its toll on.)So, tomorrow we aren't going to mope around the house and feel sorry for Sarah and ourselves for all that we have lost. That would be silly. Instead we are going to head out for a family dinner to celebrate all that we have been given these last 4 years. We will celebrate Sarah, but also Andy, Josh, and Elizabeth too. Her disease affects them all in a 100 small different ways.
Sarah is absolutely amazing. Her life is worth celebrating. If you know her personally you know exactly what I am talking about.
So, tomorrow have a beer, glass of wine, or perhaps some milk and toast Sarah. To all of the greatness that is yet to come in her life despite the speed bumps she may face. To her bravery. To her amazing resiliency.
