Where we stand...

"The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy." ~Martin Luther King, Jr.

This, my friends, is a quote that really resonates with me today. I am at a wall, one unlike any I have seen before. I know I have talked about my job and my love for it. I truly feel called to work with my students and yet I feel flat. I love my life, have a great family and wonderful friends and yet I feel flat. Why? I don't know...

When you have a child with a chronic disease you live a life on a roller coaster. Some days you are laughing and having fun and others you are screaming. Some days this life wears on you. I think that's where I am, worn. I am not the shabby chic kind of worn, but rather worn down to the nub kind of worn.

Javad has been sick for many weeks. I have been standing in a place for him to get better. I feel a bit like Atlas pushing the rock up the hill. I am tired, weary. This week we are admitting Javad to the hospital for tests. It is one of those times when I am mixed about what I want them to find. Part of me wants them to find something because I have felt for so long that I knew what is going on and I want it to get treated, but the other part of me clearly wants nothing to be wrong. It is a difficult place to be in.

When you have a child with a life threatening disease, you are continually faced with a reality that no parent should have to face. What if?

I realize that, as a parent, we are not guaranteed anything for our children, but I can count on two fingers the times that I thought any of my other children were in mortal danger. With Javad, this is a thought that is constantly nagging the back of my mind. What if this is the time they don't figure it out? Javad's disease is so rare and there are so few children in the world that every loss is felt throughout the entire community. Don't get me wrong, I am not being morbid, just trying to sort this all out.

So, how I see it, is that now is a time of challenge and controversy, so Dr. King would say that this is the time where I am to be measured. I would like to think that I will measure up in these times, but I am concerned because of this wall I have hit. Will I be able to be measured? Will I have the energy?

I am always the strong one, the one that fights. I know that when push comes to shove, I will be in fine form, but at what cost to my soul?

My life is one of comfort and convenience. I truly have nothing to complain about. My body is aching and my heart hurts because I am powerless in this area of life. Every parent wants to take pain from their children, have them live a life of innocence. Today, Javad was swinging and "walking" backward. The joy on his face captured my heart, but I am deeply tired and weary. The joy he brings is beyond bounds and I would never choose for him to be healthy and not know this boy that I have. He has forever changed me, made me see people for who they really are, made me see the limits of myself, taught me what deep love can be. He is my heart, this little man.

I want to be measured and found to be adequate. I want warm healing breath to come into my soul. I want to be found to be enough in this time of challenge. This will not be the last challenge, of that I am sure, but I want to be able to get over this wall instead of being held by it. I want to be free...


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