I haven't posted since June 25th. I haven't wanted to write. I have spent a lot of time wondering--wondering why me?  Why my life?  I have spent a lot of time feeling like I was dealt a shitty hand.  I have been busy playing my violin.

Since June 25th, Evan spent time in rehabilitation gaining his strength for a couple of weeks, then he had a seizure, caused by the medications and was sent back to floor. There, we also found he had a staph  infection that caused terrible blistering in his mouth and on his face and entered into his blood stream. For a couple of weeks he remained on the floor in bed taking antibiotics and anti-fungals.  Infectious disease was concerned it could be a deep lung fungal infection, and they treated him out of caution.  It turned out after removing a sample from his lungs that he did not have a fungal infection, and the staph finally cleared.  In his condition, with the heavy immunosuppressants he was on to stop the underlying vasculitis, an infection of any kind could be deadly for him.  He finally got better, and was cleared to go back into rehab.  

Six weeks was the time estimated that he would need in rehab to be able to do basic self care without assistance.  Six more weeks...He was scheduled to discharge on September 4, 2020. He was first admitted to the hospital on April 8, 2020.  He came home today---September 4, 2020.  Evan spent five months in the hospital.

It has been a long journey for Evan.  He has been our strength, our hope, and full of love.  The team in the rehab unit loved having Evan. They were very sad to see him leave.  

He is such a hard worker."

"He is such a great kid."  

"He is so polite."

Through it all, he smiled; he said please and thank you; he kept pushing.  I kept pushing.  We kept pushing because Evan kept pushing through it all.  His life will be different.  He looks a little different.  He knows this.  His body is different.  His skin is different. His hair is different.  His outlook may even be different.  But, his spirit is the same.  He laughs. He plays video games with friends online ,and he swears like a teenage boy (he doesn't think I hear him).  He looks at his mother, and he wonders if I am ok.  He knows I worry.  He knows I am afraid. He sees through all of the veneer. He says, "Mom, stop worrying.  I am ok.  I got it." He does.  I don't.

He is home, and he walked up the stairs, several times today.  We have stairs now.  He can walk.  He walks differently.  He will continue outpatient physical and occupational therapy for a while. He is home. I can hear him now playing online with friends.  He is home.  He and his sister got into a verbal match today---his first day home.  She ran off crying.  He is home.  Life will be the same as it was before April 8, 2020, yet it will be so different.  I don't know what life will bring Evan.  I don't know what life will bring me.  But, I am going to play this shitty hand I was dealt. I will do it with gratitude because Evan is home.  I will look at it as an opportunity for growth.  I will feel the pain and move through it, and I will remember to love.  Evan is home.