It Breaks My Heart Still

I took Sarah grocery shopping with me today. I knew she needed to get out of the house and I didn't want to shop alone. I figured she was a safe bet to take with me since she cannot see what items are on the shelf and therefore cannot ask for some random food item that is not on my list.

Because her body wears out on her pretty quickly she will sometimes ride in the cart when I take her places with me. Today was no exception. As I was crossing off items on my list and placing them into the cart Sarah said to me out of the blue, "Mama, I can no longer remember what I look like."

This statement damn near brought me to my knees in the store. The quickest things I could think of to say in response and still maintain my composure was to ask her if she could use her hands to help her see her face and to remember what she looks like. She told me that she has tried and that it doesn't work.

When you experience heartbreak - your heart literally hurts. I felt this pain a lot when Sarah was first sick and was in and out of the hospital all of the time. I literally had to put my hand over my heart to stop the ache from getting worse. I haven't felt that pain in a long time, but I cannot get rid of it tonight. That ache is indescribable, and I wouldn't wish it upon my worst enemy.

Maybe you don't ever get over heartbreak like this. Maybe you just learn to live with the wound and from time to time feel it fester.

After I put her to bed tonight, Sarah told me that the shadows the she relies on to get around the house are disappearing. That the black dots are taking over everywhere and that she knows that one day all will be completely black in her world. She anticipates it to be sooner rather than later and she says that the blackness is creeping up on her slowly now unlike before where it would come on suddenly and quickly. She knows that we have tried everything to save her eyesight. Nothing has worked.

Yesterday, she came inside after being outside for a while and could not remember which room she entered. She ran into Josh, who was sitting in a chair, and panicked and then ran into a cupboard door in the school room. She started turning around in circles because she could not figure out where she was. Then she started to cry. I pulled her into my lap and let her cry it out. I knew she was scared and I knew then that the shadows she relies on so much were fading.

I cannot tell you or even verbalize in any way how much this all breaks my heart. The hurt is different than it was in the beginning, but it hurts none-the-less. I still have to hold my hand over my chest to make it stop.

I was angry with God tonight. Angry because life is not fair. Angry because Sarah does not deserve this. Angry because it doesn't make sense - there is no rhyme or reason for her illness. Just luck of the draw or perhaps some other ridiculous reason.

After I was done being angry I remembered to be thankful.  Thankful that she can still walk. Thankful that she can still use the restroom on her own. Thankful that she still has her cognitive abilities. Thankful that she is not on a respirator. Thankful that she is alive. This disease could take any or all of these things away from her. It may do so yet, but for now all it has taken it her eyesight.

And all the while I am thankful I still feel a throbbing ache in my chest. Because, even after all that we have been through as a family with the disease that lives in Sarah's body and even though I should be used to all of this, it breaks my heart still.