A Voice

Over the last couple of days I was able to hear Nick’s voice again and man o man does it warm this mothers heart.  He may not be able to say Hi or Help or Stop, but he can vocalize a noise when he yawns like in a sigh or when he coughs. Previously because of his tracheostomy when he did those things before it was all silent. The first time he heard his own voice his eyes opened wide and one couldn’t help but smile.

Two days ago Nick left his hospital room in a specialized chair called a cardiac chair. He was able to do this because he is no longer attached to a ventilator and he is getting stronger using his own lungs again.  

The Cardiac chair enables him to sit up but not in a full 90 degree angle.  He needs to slowly work up to holding his own head up which some of you may remember from anatomy class weighs around 8lbs.  When Nick was being wheeled around the hallways he did something he used to do when he was a baby riding in a car…he fell asleep.  That didn’t make his therapists happy but it soothed my spirit in a strange way to be transported back to his beginning.

Days are now filled with Physical Therapy, Occupational Therapy, and Speech Therapy.  Each therapy wears Nick out.  The problem is they are sometimes back to back and when that happens Nick just shuts down.  Then the rest of the night for him is basically trying to calm down.  If any of you have ever been in a hospital or have visited someone in a hospital imagine how noisy it is.  It is really loud with machines and garbage cans banging and people talking.  These noises are intense for someone with a traumatic brain injury.  It is like being at a loud party or a loud concert and your friend is trying to talk to you.  You are straining to hear your friend and you also hear all the other noise and you can’t reduce one so it just turns into madness.

I have learned how to perform all of his therapies including cleaning his tracheostomy.  It is good for the weekends because physical therapies stop on the weekends.  It is also good because he will be coming home one day and I want to be ready to do anything.

Things we are working on is putting some weight back on Nick since he lost weight during his illness and when he went into the hospital he was pretty lean to begin with.  He needs to build muscle so he can learn to walk again.  This coming Monday we are meeting a nurse from the Rehabilitation Institute of Chicago (RIC) to be evaluated. RIC sees 700 Traumatic Brain injury cases a year and Nick needs to be one of them.  I have gone on their website and read some very inspirational stories of healing with various levels of recovery which makes me even more desperate for him to be accepted.  I am trying to not hold tight to this desire and just trust once again in God and Nick that this will all happen when it needs to happen and healing is on Nick’s time not in a time that my little magical mind creates.

Other therapies Nick is receiving is aromatherapy, Chiropractic, Acupressure, Energy healing, Mantra healing, and Enzyme therapy.  All these alternative therapies have shown some benefit and this week I will add chair yoga based on what I saw Rita do at Misericordia.  

Personally as a family we have had good days and bad days.  We are not successfully navigating the new normal just yet.  It will take some time.  I had to resign from my full time job at Mather’s More than a Cafe which has been scary.   The company has been very good about allowing me to keep my insurance for Nick and myself so I didn’t have to go buy new insurance just yet. 

I still have my part time gig with A Bigger World Foundation and Matt the founder and I are trying to figure out how I can still perform my duties under these circumstances.  It will be a good thing for me to keep creating positive experiences for kids which is what I do for A Bigger World ,while my kid is on the struggle bus.  I need to bathe myself in inspiring youth energy so I don’t forget possibility thinking.   Pray that I figure all of this out.

Much love.