June 13, 2011-2016.  Five years ….

5 years ago today, Tom fought the fight of his life.  After suffering an aneurysm, and heart attack, Tom lay in the ICU at Palomar Medical Center in a coma.  Doctors worked their magic and beyond all odds, and beyond anyone’s belief, Tom did survive.  Thanks mostly to his first responder, Samantha.  Then  the paramedics and then all the doctors and medical professionals.  But mostly, you have to know that being loved and being held and being in everyone’s prayers, created a miracle of survival.

It is hard to believe it has been five years.  Much has changed since that day.  I am a different person by far.  The way we spend our days,  my work, Samantha’s life.   But what hasn’t changed is how we care for Tom.   We care for him, we literally care for him every day helping him dress, get ready for his day, point him in the right direction to go where he needs to go….and helping him to meals and helping him find  some joy in his day.   The days are the same to him, but different for me.  Different for Samantha.   We have seen the progress.  Little pebbles of progress that have formed our new life with Tom.   We witness the daily struggles, frustration and the small joys.   We also have seen the progress stagger and stop.  That is our frustration as well as Tom’s.   Sometimes just getting dressed can be a struggle on any given day.   Sometimes, he surprises us with a conversation or a memory.  Some days, all he wants to do is sleep.   We as a family have now accepted and understand the damage that has been done and the limits it has given us as a family.   We know we can still share special moments and remind him of special days, but every day for him begins again every 5-7 minutes.

I have come to understand and accept the pain and disappointment that life dished out to us.  But even with that in mind, I know that there is always hope, and the joy of having someone you love with you against the odds.  To be loved, to feel love, the express love and to provide love to your family is the bonus that a tragedy provides you.  We know Tom is glad to be here, Samantha is glad he is here even though it is not how she imagined her life to be with her father.  She can share special moments with him and have a photo to remember.   That photo also helps him to remember even though the memory is no longer in his brain.

You know that life is short, that life is unpredictable, unfair, and sometimes downright hard to take.  But in the end, we will always want to ask ourselves, “Did you get what you wanted?”  ….did you get what you wanted out of life.  No matter how long or short our lives are, we will ask ourselves that question.   I hope that in the end, that we will have some contentment of how we did do what we wanted,   we might have been forced into making decisions we didn’t know we could make, but we did it, and we are better for making those decisions.   Did Tom get what he wanted…I think he got life and that is what anyone would want.  No matter how difficult life can get, it is always better to have a life than not.

For the future, it is still uncertain for Tom.  The doctors do think he has made a remarkable recovery from their perspective.  For everyone else, the illness is over.  It has been 5 years.  And for most people, it is done in their mind.  For me, it is never over.  I still live with anxiety and fear of something happening.  I am certainly joyful and grateful for the way things did turn out.  We have Tom with us.  I do think about those less fortunate all the time, as I hear of people not surviving the very thing Tom survived.  Today, after 5 years,  I am grateful that I get to help Tom get ready for his day.  Help him dress, shave and make him breakfast.  As 5 years ago, I didn’t know that would be possible.   I look back on this year and my line up of the two most important people to me can still hug, have a conversation and make memories.  Samantha is a happy soul.  She knows and sees the frustration and it does affect her, but she seems to find the good in something about it every day.  She helps me so much without even knowing it when I watch her patience with Tom.  She doesn’t let the situation bring her down.  She just knows it is what has happened, it cannot be changed,  just accept it.  Work within the limitations that he has.

Caring for someone with a disability is like running a marathon with someone riding piggy-back and the finish line moving every time you get close.  I guess it is my way of learning that life has no finish line.  If it does, you just don’t get to decide when you cross it.   In fact, the course can detour dramatically at any moment so we better not become too attached to our own footpath.  You will be challenged on that path at sometime, and will have to make a decision.  Choose well.  Happy 5 years to Tom.