A long Update

Tonight when I was walking to the train from the hospital I was admiring the holiday lights downtown and the sky in winter and how things were crisp and a little bit uncomfortable, but if I walked faster I can create enough body heat to keep just warm enough and I was happy.

I have been realizing that with this unfortunate set of circumstances since Halloween my life has become very small in focus, but strangely I have more freedom then I have ever had.  When I was forced to strip away all the fodder that I have attached to my life I have found something I love…..myself.  

Yes, I am worried about things like when Nick becomes fully awake he may resent his dad and I for saving his life because his healing journey is incredibly painful and very hard.  Exhausting really.  I am worried that the pieces of Nick that will arrive may be someone totally different than the boy I had before The West Nile Virus stopped his heart.

Something that I have been examining over and over since that dreadful day that Nick died was an event that happened at his birth.  This is something I have never ever acknowledged to anyone ever except for a few family members recently in the waiting room at the hospital when we truly didn’t know if Nick would live or die.

Here it goes…..

When Emily and Nick were born on August 26th 1992 I had a “visit” shall we say from a spirit.  I was holding Nick in my arms and a voice clear as a bell said, “He is your gift that was given to you to show you that we see you are now making right choices in your life”  Previously, I had made some really poor choices of which I paid the price for and they haunted me for quite a while, but I had turned the corner and I created the Inspiration Cafe and I was growing in my spiritual walk and I was doing this very consciously. 

 This spirit also said to me that Nick wouldn’t live long and left it so vague that I was petrified he would die as a little baby.  I never told Perry or any family member this story of my visit from this spirit because I feared saying it out loud would make it come true.

It did eventually.  Nick died twice on October 31, 2015 and that one way conversation on the fateful day of his birth kept creeping into my head as we sat vigil by his bedside.

So what I am feeling now is that this new Nick who is emerging will be completely free of that weird soul contract that I had experienced.  This brings me great gladness and a bit of trepidation on what is to come or who is to come from all of this. My family which is more than just Perry, Emily and myself is learning new ways to define ourselves and this brings either curiosity and wonder or the opposite of that. 

Two years ago I attended this year long program called the Good Life Project. It is a program that takes entrepreneurs from all walks of life on a journey for a full year where we share our entrepreneurial story.  We explore what makes us tick and how we can expand on the work we do in the world.  It is overseen by its creator Jonathan Fields and it is meant to shake the boat a bit on a personal level to either change the game in your business and personal life or take a deeper dive into oneself.

At the end of the program I was still in what Jonathan calls “The Thrash” because I didn’t really know what my next move was.  Like any good teacher he asked all the questions of where I put my energy and what makes me happy etc.  One day I said to him, I know I am suppose to look at my community work because it is naturally what comes out of me, but if I were to be totally honest, I mean brutally honest with myself what makes me happy is to work in my garden, cook for my family, love on my animals and just basically be a housewife.

Can I have a job as a housewife?  Don’t you think it is funny that what I want to be when I grow up is to be a housewife?  I won the Presidential Citizens Medal for the work I have done in our community for kripes sake and here I am secretly wanting to garden and cook and clean and fold laundry and tend to my animals.  Who the hell am I?

Jonathan didn’t save me or give me an answer he just left it hang out there.

Here I am two years later with a son who has a brain injury needing round the clock care and where is he going?  Home.  What will I be doing? Care taking and Homemaking and doing my paid work from my home office.  Kind of what I said I love to do in a twisted way.

Strange right? 

Note to self:  When making a dream life list add details and really flesh it out because if I had done that I would of made sure that mine said that all my family members where happy and healthy before I laid out the homemaking vision.

Okay, enough about me.  Let’s get to the main attraction Mr. Nick.  He is doing awesome.  We had a meeting with the doctors and therapist’s and learned about their goals for Nick and his discharge date which is January 20.  We learned a few things.  One is Nick isn’t classified as a Traumatic Brain injury he is actually classified as a Non-traumatic brain injury because his injuries were caused by Viral encephalitis and Cardiac arrest.  His brain has some damage in his hippocampus and he will get another Cat Scan to see where the fluid is residing in his frontal lobe or if the body absorbed that.  He will be getting more neural stimulants this week and he is set to get his tracheostomy out on Monday the 4th or Tuesday the 5th.  That means the only thing left to come out would be his feeding tube but that will be way down the line.

Nick in physical therapy has learned to sit up more on his own.  He is getting stronger all the time. He peddled a recumbent bike for a short time and he has been on a tilt table which is the first step to getting in something called a Stander which will lead to learning how to walk again.  We are battling muscles spasms which is normal in brain injured individuals and they are very painful but with the help of my massage therapist friends and myself we have given Nick a great shot at having almost complete motion of his arms and legs. Nick has been fitted for splints on his arms and legs to keep his muscle integrity in tact but he fights them so much he is actually causing more harm to himself than good so I have negotiated with the Occupational Therapists to let me and his dad stretch him and to honor the healing path Nick has chosen for himself.

Our son amazes me each and every day and I really can’t express that fact enough.

Our next steps are to start construction on our home to accommodate this new family situation.  We need to have a ramp built and to have a few doorways widened and we have to change the configuration of our first floor bathroom.  We have been in contact with a lawyer who is to set up a non profit foundation for Nick so we can raise funds for his care.  Nick is getting fitted for a wheel chair on January 12th and I will be purchasing a hospital bed, a lift, a shower chair, a bladder scanner, all the medical supplies that go with that and gym equipment because we need to make our front room a mini physical therapy space.

I have a few things on my plate don’t you think?  We couldn’t do this without our friends and family (and some very kind strangers).  Perry and I still hold deep gratitude to all of you.

Thank you.