It is a new day. I almost feel guilty for going about my day in a normal way. Everything seems to be alright, I am healthy, my family is healthy, we are not suffering any significant crisis. Really, my biggest complaint is that weather isn't very spring-like today and my niece doesn't like to have her diaper changed.
Today I get to spend the day with my husband, DD#2, and baby niece. DD#1 will return from school this afternoon. Later in the evening we are scheduled to meet friends for a fish fry. I'm sure it will be an enjoyable evening. Soon it is Spring break for our family and we are looking forward to a few days together on mini-vacation, a break from the routine.
It is not fair that everything is normal for me. When nothing is okay or normal for M or her family. They are facing the harsh reality that we are mortal beings. It is so incredibly unfair.
Today my heart is aching for her children. How will they do in school today? Can they focus? Is their homework complete? Did someone give them a hug on their way out the door? Do they have a lunch? Who's doing laundry? All these 'Mom' concerns.... life will never be the same for these boys. Makes me sad.
As I look forward with anticipation to the future, I know they are likely dreading the future. The boys are young, but discerning. I am certain they understand the gravity of the situation even if they don't understand what is happening. After all, all the adults around them are sad. People they haven't seen or never met are showing up.
The boys were there as I visited the other day. We all put on a face of being strong. The 12 year old made us laugh at his technology prowess as we adults struggled with it. The 8 year old found the candy and added decorations to the door. Acting much like they should at those ages. Yet, my mother's eye saw their confusion, their uncertainty, the anxiety of the unknown and lack of understanding. They were so tender with their mom, hovering near her bed, stroking her arm, and probably wishing we, her friends, would leave so they could have time alone with her. I know they were wishing she would be fine and return home with them.
I was touched by the beautiful flower in M's hair. That was a gift of her youngest son. It took away some of the austerity of the situation. Such a thoughtful act for the mom he loves.
I attempted to draw the older child out by asking him of school. Even though M cannot communicate the way she use to, it was evident she was interested in what he had to say. We discussed his studies and carried on a conversation.
Each time one of the boys drew near, M would follow them, her facial features would soften, or sometimes have a look of consternation with something she so wanted to communicate. She loves having them near her. When she couldn't find them in the room later, she seemed to have a bit of anxiety but relaxed when we told her they went home so they could attend school the next day.
So, I feel guilty. Guilty that I can hug my children while she can't any longer; guilty that I can continue to care for mine as she is losing the ability to care for hers. Guilty that I can't do anything to make it better. Guilty that I can look to the future and plan.
I am resolving to make the most of moments as much as possible. To tell my family that I love them, appreciate them, cherish them. Share my "wisdom" that I want to share, now while I can... one never knows when that opportunity will vanish.
CJD is a cruel, wretched disease. It is unfair.
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