Moments of Clarity...

This weekend has been an interesting one...interesting in good ways. First and foremost, my daughter, Stesha, was offered (and accepted) a job at Louisiana State University. That is the great news. The crazy news is that she is moving this coming weekend and starting her new job on June 3. It is awesome and crazy all at the same time.

Meanwhile, at home, Javad is doing well. When I post pictures of him it is deceiving...he looks much stronger than he is. He has fully regained the ability to give a cheesy grin (with accompanying drool coming from the side of his mouth) and can now stick his tongue out and close his mouth for a period of time. Similar to when he was a baby, David is working hard at having him do "monkey see, monkey do" tasks like stick his tongue out, give kisses, etc. On Friday, his teacher came and started to use a laser pointer with him so he say "Yes" and "No." Step-by-step he improves, although it is not fast, he is improving.  This was a moment of clarity for me...we are making progress...maybe not as fast as I want or as dramatic as I would like, but he is here, moving forward. I need to be celebrating that, focusing on what is, not what isn't.

This weekend we didn't have night nursing for two nights. Not having nursing really confirmed to me how lucky we have been over the years...Javad has required a minimal amount of care at night and we have been able to sleep. Now that his medical status has changed, he requires more monitoring. This was another moment of clarity for our world of medically fragile, Javad has moved into a place where he was stable, even at times, strong. I need to remember that he is a fighter, not be defeated by this set-back, rather encouraged by each move he makes. I need to focus on what is, not what isn't.

So many things are different, and yet, they are the same. I am lucky that I have close friends who understand this crazy life we lead, friends who understand that energy ebbs and flows, friends who see themselves as part of the solution. True that through this all, there has been mourning. Similar to when Javad was a baby, I remember the things he will never do, and now I am hoping that the things he used to do are on the table again. The last thirteen years have been ones that I tried to fill with hope and belief of what he will be and now, I need to continue on the path. This is where the real clarity comes...I am in charge of my own joy, my own hope, my own fears. I can choose how much power to give fear and I choose joy. I believe that Javad will improve...I know that he is inside, trying to figure out how to tell us what he wants and needs.

It is time to lift the fog and find the moments of clarity, time to see the future ahead, time for hope and joy to reign. It is time to choose and...I choose Javad.


  1. I love your strength and grace. Thanks so much for sharing this journey with all of us. Love to you!


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