Rage has taken up residence in my heart today. I am angrier than angry. I wanted nothing more to walk up to the top of A Mountain this morning when I woke up and scream at God at the top of my lungs. I wanted to yell at him for all of the injustices that my daughter has suffered on his watch. I wanted to tell him that he was an a-hole.
The ache in my chest is not subsiding. It has been with me every second of last night and stayed with me throughout the night. It tapped me on the shoulder this morning when I opened my eyes to remind me of its presence. To those of you who have no idea what this ache feels like - I pray you never have feel its hurt. To those of you who are intimate with this ache - please pray for me as you alone know how difficult and lonely the ache makes you feel. Even in a crowded room filled with loved ones you feel alone. The hurting throbs in your heart. It almost chokes you. At some points today I have felt like that ache was going to bring me to my knees. At others I have felt like giving the finger to the sky. The utter sorrow and rage alternate taking center stage in my heart. I do not know how long they will maintain a residence there. I hope I can kick them out before they get too comfortable. I want to move beyond the pain and hurt. I want to move beyond the sadness, but as I am reminded so acutely these last two days, I am not dealing with an issue that will go away. I am dealing with an issue, that until there is a cure, will be a life long struggle. I cannot push any of this away. It is in my life for better or for worse. I pray that it is the former that I will deal with.
I forget that Sarah is not blind because she has some eye condition alone. Sarah is blind because she has a disease that resides in her body and has the potential to unleash an unrelenting storm of crippling damage. It hides and crouches waiting for opportune times to strike. It lets us get comfortable and feel that we have a handle on things and then it slowly slithers throughout her body eating away at her brain and currently, her optic nerves. It causes extreme exhaustion in her little body. And makes every day tasks seem like running a marathon.
And she handles this with grace. She will be experiencing a symptom in her little body and will wait sometimes days - sometimes weeks to tell me about it. She is hoping that the symptoms will go away on their own. She doesn't want to bother or upset me. And even though I try to hide the emotion from her she is too smart. She knows. She is wise beyond her years. This disease has forced her to be so. Only when she is certain that the symptoms are not going away does she let me know what is going on. She doesn't dare tell her daddy what is happening within her body - she let's me do that. I think she is trying to save him the heartbreak because she knows of their bond and the connection they share. She doesn't want to hurt him. She would rather I tell him the news.
I should not have been surprised yesterday when she told me that she could no longer remember what she looked like. After all, how much can you remember from when you were 10? I can remember bits and pieces of my life, but not a whole lot. Now imagine what it would be like to be 8 and have two years of your life be a Swiss cheese of blurry and more blurry memories. Some of the holes in those two years are bigger than others. Some of the gaps in time do not allow any visual memories at all.
I have been thinking a lot between last night and this morning. I wonder when the last time was that the was able to see herself in the mirror? Did she know then that it would be the last time she would ever see her face? How can I accurately describe her beauty? How can I put into words her beautiful blue eyes? Her long wavy brown hair? Her bony chin? Her lean and tall body that is slowly becoming that of a young woman's? How can I describe a beauty that is indescribable? What is the last memory she has of her sister? And how about her brothers? Or her Nana & Papa? Her grandparents? She will not see what her youngest cousin looks like. What will she remember of me?
As she grows I wonder how much memory she will be left with. Will she remember all of the trips we took a little over a year ago in order to allow her mind to capture as much of this beautiful country as it possibly could? Or will she only remember her experiences through the eyes of a blind person?
With every little piece of the picture that fades in her memory a part of her old life dies. I feel certain that a part of me dies too.
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