Also known as:
Em Has Come a Long Way in 4 Years
4 years ago, Em had badly dislocated her knee. We were waiting for an MRI, Physical Therapy and an explanation, still blissfully unaware that her life had changed irrevocably.
3 years ago, she had spiraled downhill and by the end of the summer was profoundly debilitated by dysautonomia and was headed for even scarier times.
2 years ago, we were desperately waiting for a neurology appointment that would either make it possible to try Diamox or not. (It did and the rest is history.)
1 year ago, Em was still recovering from her appendectomy, having lost more than 20 pounds and struggling mightily with gastroparesis symptoms.
Last night, Em auditioned for a part in The Sound of Music. Let me repeat that: Last night, Em auditioned for a part in The Sound of Music. She walked up on stage, she stood for probably 2 hours give or take a few minutes. She sang alone for the musical director. She danced. She faced down her anxiety. And auditioned.
Will she get a part? Probably not, but it doesn’t really matter – that she was able to actually participate in the audition process is practically a miracle. When I saw her up there with all of the other kids, I teared up, knowing what she has been through. No one there knew what she has lived with or the challenges she faces. Oh, we know many of the people who were involved and they may have a vague understanding that Em has been sick. But, they only know the barest details and just saw a pale, pretty, quiet girl who was not quite as perky as the other teenagers on stage. Me? I saw a miracle and the bravest person I have ever known.
What she overcame to get up on that stage is significant… She has been very ill for a long time and has enough medical conditions to go on with. Any one of those conditions is enough to bring the average person to their knees but she is not going to be defeated by it all. Yeah, the past 4 years have been tough, but she is overcoming. Just her day-to-day challenges are big enough to overcome – and, sadly, that is with her being significantly better.
I don’t think it is much of an exaggeration to compare this child to Job. (You know, Job, from the Bible: Job suffered greatly – he lost his children and his livestock (and thus his wealth) and then his health was taken. He suffered profound agony as his body failed. His friends said he must have done something to deserve it. )
Yesterday morning, the day of the audition, Em woke up with a serious stuffy nose and sore throat and her voice was shot. The hot lemonade and honey she drank to help her throat triggered a mast cell reaction and she was curled up on the floor in agony from the stomach pain. She was nauseated and struggled to eat the rest of the day. She had wrenched her ankle the night before and it was still very sore; she twisted the other ankle when she got up. Her shoulder was messed up more than usual and that cascaded to the rest of her upper body joints so she was just a mess. She was exhausted before she even got up.
But, she was determined to audition. And she did. She could have focused on how bad she felt. She could have dwelt on how she has missed the last 4 years at the theatre, when it had become such an integral part of her life. She could have though about how unfair it is that during the years the other kids were honing their skills, she was bedridden. But, she didn’t. She decided to step out in faith and reach beyond herself.
She feels horrible today, of course. The cold she struggled with yesterday prevented her from sleeping well last night, after an exhausting 4 hour audition. She is in a lot of pain. Her SI went out and she couldn’t get it back in. Her feet hurt. Her head hurts. But, she accomplished something special last night. Needless to say, I am proud. And grateful for the progress we have made – progress that I thought completely out of reach a couple years ago.