100 Days

Yesterday as I was pulling on my jeans I noticed battle wounds on my thighs.  I have bruises up and down my legs  from all the physical stuff that I have to do now for Nick. When I arrived at the hospital to change shifts with Perry I walked in to find Nick in discomfort and when he saw my face and heard my voice the tears came.  He was just feeling really crappy.  Now that he is more aware we can communicate in small ways and I made signs asking if he was in pain or was he feeling nauseated.  He told me he was feeling nauseated.  This was from his gastro paresis and it didn’t end for 12 hours.

The past couple of days have been challenging for me.  I can see cracks in my armor and they aren’t the beautiful ones that let the light shine in.  These cracks are the ones that shift my foundation cause some instability before the fall.  This fact doesn’t scare me like it has in the past.  In fact watching your child die in front of your eyes really has erased a good handful of irrational fears that I have clung to before. The cracks that I have now are the ones that cause you to break open and reshape AGAIN.  The good news is that this process is pretty cool when it happens the bad news is, at least for me, things get harsh, painful and exhausting.   Although, this time I know its just a season in my my growth so there is an end to it and each ending after I have transitioned through something big has brought more joy and more depth to my spiritual journey so it has been worth it.

 Nick is shapeshifting himself.   He is becoming the new Nick with the old Nick’s essence inside.  He recently had a Cat Scan which showed that the damage to his brain is now stable and there is no new blood or fluid creating chaos. Our next big challenges besides all the challenges with his gut are communication and gearing up to learn to walk again.  Nick has been doing so well that his date of departure has been changed once again to the 26th of February. 

Yesterday marked 100 days.

We are all still trying to navigate these waters.  I have taken Nick outside the hospital a few times now doing different things and I have learned in short order how my most difficult times will always be the emotions of others.  It is something that is hard for me to do these past 100 days.  I would take 300 squat pivot transfers to one person feeling sorry for us or one horrified look that I dared invade the space of an able body person.  

This used to happen all the time when I was building the Inspiration Cafe.  I would be working with people who were homeless and when their reality bled into the non homeless community there was always judgment and feeling sorry for etc.  Then I realized its not my job to change your attitude.  It is my job to serve who I am serving at that moment.  

It is hard enough when expectations and philosophies clash right in my own backyard.  Things I find as strengths other family members may find as weaknesses or challenges.  It is when someone close to me reflects what Nick won’t be able to do any longer as if I haven’t recognize that fact.  I do recognize it but I don’t dwell in it.  Plus, it is always in the delivery of your comments.  If there is any melancholy or slumpiness in your voice, the hair on the back of my neck raises up.  Which I know is a judgment on my part so I am working on that and I am learning to let everyone just have their own thoughts and feelings and I really just need to stay in my own lane. Period. 

Nick recently received Botox injections in the muscles in his arms so his wrists can unfurl.  His hands are contracted and every time I work on them I tell him that I am doing it because I know he would want to play his guitar again.  

Music has been healing Nick.  We now play it all the time in his room and in his therapies.  Perry was with Nick when a music therapist came in and Perry told me that Nick responded right away when the guy played his guitar.  I put in a request for more of that type of therapy and when we get home it will be one of the first therapies I will explore to bring in the home.

This week with Nick will be about Stretch, Strength, and Communication.  These three things will unlock a whole plethora of new pathways.  Nick is also getting fitted for a custom wheelchair (hallelujah ) and he is having another Cat Scan.  I will be doing more lunge squats in the hallways and will be lifting some weights and Nick and I will be doing more yoga.

Wish us luck!