Raise the Bar

This post was to be the “Dark” post to balance the “Light” post from last month but I couldn’t  pull it off because with each dark alley we go down as a family at the end I find a kitten or a unicorn or an angel.  Meaning I find something that opens my heart more or is miraculous and fun or holy.  This past month has not disappointed in the least!

All along this journey one of my favorite things is the “raising the bar” scenarios.  It has been so interesting because I raise the bar and make big goals for myself all the time, but when it comes to someone else my bar raising is always complicated.  It gets sketchy when the other person has come from a troubled past or a past that was so unfair and awful it’s hard to breathe or when someone inherited a big obstacle totally outside their choice and you know how dang hard their lives will be.  That is when I go into full compassion mode with a lot of hand holding and “let me help you over that wall” mode.

This way of being became challenged when I became the director of a small family foundation 4 years ago. A Bigger World Foundation  was founded by a man I call Miracle Matt and I have talked about him in previous posts.  I call him “Miracle Matt” because getting the job in the first place was remarkable.  Not because I don’t have the skills set to create a foundation, but because my interview was set up by a friend of mine who lives in Atlanta and it was so random and out of the blue.  However, I don’t want to get sidetracked with that great story I want to tell you how Matt and I used to butt heads over the way a few things should be played out with the youth we were serving. 

Matt has an incredible journey full of hard work, curiosity and drive. He has become very successful in many ways with one being financial that he decided to create a family foundation.   He comes to the table with a whole different set of eyes based on the things he has learned along the way just like myself and just like anyone really right?  When we were working with our kids I always wanted to “cut them some slack” so to speak because many of the kids had big obstacles to overcome.  Matt on the other hand always wanted to RAISE THE BAR.  It used to annoy the fuck out of me and I would try to preach my case from my point of view.  Matt would listen to me and then think about it and say “that doesn’t feel right to me so I think we should do it this way.”  The thing I loved about working at A Bigger World was we both worked first from out guts and then from our heads.   I respected his answer for two reasons.  One being the obvious he was my boss and two maybe I don’t know all things and I can learn something myself.

Matt was always right.

Ugh.

I could weave a story on how my point of view was valid and good and would totally work too, but for the impact we wanted to make with these kids Matt’s way was always better……annoyingly.  The kids we were serving ALWAYS rose to the occasion.  We honored who they were as people and we recognized the challenges they had, but we RAISED THE BAR and believed they could reach it in spite of themselves and what they carried.

All this to say I have had a goal for Nick this whole year. I have had a vision in my head that before the year anniversary was up Nick would be standing at the parallel bars in rehab learning the very first things one needs to begin to walk again.  We are coming up on a year October 31 and his year anniversary and I needed to make this happen. When we went to rehab a few weeks back the therapist asked me what I wanted to do that day and I said I wanted to get Nick on the parallel bars and in a standing position so he can envision himself walking again.  The team was a bit taken back, but they have seen Nick do things recently that were unexpected.

So his therapists RAISED THE BAR and this happened :-)

After that day I texted Matt everything I just told you and he loved the story because he knew how awesome this was.  Can you see how big I was smiling? It was one perfect moment.

In closing I want to salute all the people the raise the bar for others with love and intention.  Matt was never militant in his thinking or had to prove anything he just wanted the kids to know they were awesome and they had what it took inside of them all along.

Nick does too.  Since this day we have done the parallel bars again and he stood all the way up, but I didn’t have my phone in my back pocket unfortunately to snap a picture so you will have to imagine it.

  I ask that in your quiet moments you envision Nick fully upright and strong walking with his feet firmly planted on the ground.  If we all have a collective vision great things will happen.

The Light

So much has happened this last month I don’t even know where to begin!  Ack! I guess I will work my way backwards because I want to celebrate the awesomeness for the people who surround us in love and help us on our path.  I chose to title this post The Light because another post coming up will be The Dark.  I was planning on doing one big post, but when I started writing about the not so fun stuff it felt icky on the page and it muddied the celebratory feel of our gratitude.

Let there be light!

 The Candlelite restaurant in Chicago (thanks Pete and Pat ) closed their doors for us on August 8th so we could celebrate Nick and raise money.  For those of you who went to the event Thank you so much!!!  For those of you who didn’t well, you missed a good party. A Big thank you to Jackie Kaplan-Perkins and her team and to my family and friends who volunteered Susie, Tricia, Steve, Rita, Suzen, Pam and Beebs! If I forgot someone please don’t take it to heart my mind hasn’t been able to contain a ton of information lately :)

  There was pizza, salad and beer and drinks and laughter and squeals from folks who haven’t seen each other in a very long time.  Basically it was amazing.  We raised $10,000 which went towards the Ford Transit Connect Van and its lift equipment.  We were able to pay off our $7000 lift and to pay for some medical treatments.  Pete one of the owners of the Candlelite took me to Gillespie Ford to pick up our mighty chariot. Pete calls it Nick’s Whip (look up Whip in car terms)  and it works like a charm.  We were lucky enough to get 0% financing and our car payment each month is only $336 which is pretty good I think. (photos at the end)

Nick was at the party and stayed a pretty long time.  My favorite part was that he was surrounded by his friends.  His long time friends who just never left his side which meant a whole lot.  They are in the fight with us to just get back any tiny piece of Nick because a little bit of Nick is really pretty great.  Of course, we are chanting the FULL RESTORATION cheer, but we all know how long the road is and we have trained and prepared for the marathon that this is.  When tiny pieces of Nick appear pretty much all of our hearts explode.  His group of friends have already been through a lot as a collective.  Death, Cancer, Depression, fighting for the rights of all, and the usual 23 year old stuff and Nicks cheery on the top Anoxic Brain injury.  They are a mighty band of brothers (and a few sisters sprinkled in.)

Emily was home to visit which was super fantastic.  I miss her so much and now that I can’t fly to California on a whim, which is tough for my spirit.  She is our delight. She has grown into a beautiful strong rooted woman.  Even though she thinks her world is falling apart every 2.5 seconds that is pretty much the norm for your early twenties.  I can’t wait for her 30 year old self to look back and see how bad ass she was.  I know how hard it is for her to watch Nick struggle and she still is a fierce warrior for his care.  She still questions things I am doing (respectfully) and I know she is doing it because she loves her brother insanely and I can’t even imagine what it would be like to watch my siblings struggle so I just try to be there for her and support her and answer anything she needs me to answer.  When Nick saw her it was one of those moments that made butterflies in my stomach.  He looked at her directly, then looked her up and down as if to say, “is that you?” and then he started vocalizing in a very unique way which our family knows as excitement or happiness .  It was lovely…really.

Another wondrous thing is my childhood friend from grade school who I recently reconnected with Cindy Reich Masover applied for a grant from the Rory David Deutsch Foundation on our behalf and we got it!  Cindy delivered the fabulous $5000 check in person which will be used to give Nick an even better chance at success.  This wonderful soul has a ton going on in her life but she finds the time to come over and kiss Nicks forehead.  They have a special bond.  It is quite amazing to witness really.  Cindy sadly lost her love of her life just a few months ago quite unexpectedly and her grief is still very raw and fresh.  Nick’s grief is very raw and fresh and somewhere in there they speak telepathically.  It’s jaw dropping to watch and I know healing for both.

The Next Night for Nick is being planned with Heaven Meets Earth Yoga Studio for the end of September  I will post the details as soon as I have them all.

Nick as some of you know has a new communication device called a Tobi Dynavox it will allow Nick to communicate only with the gaze of his eyes.  The thing about this equipment is you really need to train yourself to gaze with your eyes.  Try it.  Just scan the room without using your head to move in a direction and find things and gaze on them.  Your ocular muscles hurt!  So like Nicks challenge to get food into by mouth because he has to retrain his muscles to eat food this eye gaze stuff is rough!  We are making it through in small ways.  He can tell me when he needs a break and he has been doing pretty well with yes and no but the other day in one of our sessions I had a moment where I almost needed to leave the room.  On his equipment we have sayings already loaded in boxes and Nick can scan the board and pick them.  This day he kept repeating “I Understand” “I Need Help”….”I Understand”….”I Need Help” and it was so deliberate I really gut level feel that he does understand and he is really asking us to help him which as a parent knowing your child is frightened and scared…..well, lets just save that for the “dark” blog post!  UGH!

Lastly, I have become an essential oil freak :-)  I don’t know if I ever wrote about my anointing Nick’s feet with Frankincense oil but it was life changing for me.  I already lean toward the Jesus is my very best pal crowd and in the bible Jesus’ body had been anointed  on several occasions and more importantly he anointed others.  It is a sacred story to me so when two of my friends came to the hospital at Holy Family (where the Virgin Mary was and I had that “moment”) and left me with a variety of Young Living Essential Oils I had a field day.  My gal pal Mary Slight left me with a diffuser which she stole from her kids room mind you, and she left me with great oils to diffuse in it.  Like Lavender and Peppermint.  My other friend Dr. Nate Clark who is the Chiropractor I used to work with left me with Theives blend which is anti bacterial and a variety of other oils he grabbed while leaving the office and they both gave me a book which has 100′s of uses of oils.

The interesting thing is that they both gave me Frankincense and both because this oil actually travels past the blood brain barrier which means it helps your brain.  When I saw Frankincense I thought I can holy anoint Nick’s feet and pray over him and connect with him in the best way possible and I knew that the bottoms of your feet directly impact all your systems so it was a win win.

Everyday I anointed Nick’s feet and prayed and every day doctors and nurses and one of my favorite groups, the cleaning staff, they would come to the room just to inhale the fragrant oils and they all told me that our room was known as the “feel good” room and they would sometimes congregated outside the door just to be in cloud of Love so to speak.

When we got home I still used the oils daily and then I started creating lotions and potions for myself which has been great.  My friend Robin Hallett makes this dynamic body spray called Love Spray and I have gone through 3 or 4 bottle of the stuff because I found it grounded me and now I had the makings of creating my own healing products which I did and still do.  Game Changer!!!!  On my new website which is being designed now I will have an essential oil freak corner and you can see what the heck I am diving into.  More importantly I want to share things with other family members of people with Traumatic and Anoxic Brain injuries.  It is something concrete they can do for their loved one and maybe help them feel less lost like it helped me.  Stay tuned  and lets see how this vision plays out!


Pop Goes the Weasel

The sound of a G-tube exiting a body comes with a small pop!  Like the kind that happens when you put your finger in your mouth and curl it around your cheek and then out your lips…*pop*  Did you hear it in your head?

Well, that was part of my week last week when I accidentally pulled out Nick’s feeding tube while transferring him from his wheelchair to the bed.  It somehow wrapped itself around the handle of the chair and when I heard that strange little noise and I looked down and saw the tube not attached to Nick any longer I freaked out.

I lifted his shirt and saw a small pool of blood collecting around the hole in is stomach.  Thankfully I just had a conversation with his Speech Therapist about what to do if this ever happened.  I grabbed gauze and tape and taped Nick up and then I ran out of the house calling to my friend Lisa who was gardening in my yard.  She was very calm and helpful (thank you Lisa) while my voice rose a few octaves.  I called 911 and they actually calmed me down and told me that it wasn’t an emergency, but I did need to take Nick to the emergency room.

When Perry Nick and I arrived at the emergency room somehow it was the busy day of the year.  We waited 5 hours and by that time the doctor couldn’t put the tube back in because our miraculous bodies heal themselves.  So the next two days I had to find a surgeon/gastro doctor and without getting into how frustrating that was Nick had surgery last week and a brand new tube was placed in his belly.

Lately, my life has been about convincing people who work in cubicles that Nick is worthy of services.  It used to drive me nuts when I had to do that when I served the homeless or even more crazy when I had to convince my superiors when I was a police officer that the help I gave was a right and not a privilege to the poor that we served.  It has been a running theme in my life.

I am burning up some crazy Karma around this right now.

This also brings up this very careful dance around pushing for what is right and needed and not pushing the buttons of the people you are trying to convince.  Sadly, I know what can happen to the person you are trying to help when the other person in power is feeling backed into a corner and they really didn’t want to serve you.  When I was a teenager I went to visit my mother in the hospital where she was detoxing from prescription drugs.  Even at a young age I could see the corruption all around me and how nobody was going to help my mom get well.  Finally, she gets into a program and I go and visit her, but I see she is in great distress and no one was attending to her needs.

I pitched a fit….in the way one does when you don’t know how to hold onto your emotions and use it to influence for good.  I got my mother what she needed, but when I left that day they put my mom in a straight jacket.  It was horrible beyond belief.  It scarred her mentally and she refused any visit from me after that because she didn’t want to be victimized like that ever again.

My soul was crushed.  I just wanted my mother to feel better and I totally got why she didn’t want me there.  It was way to scary.

As I maneuver through the medical system with Nick this story sits in the back of my mind.  I have to literally bite my tongue or step away for a moment to gather my thoughts.

Like when I received the bill for $18,000 for Nicks medical bed.  It was approved through my insurance and it has been a great help in Nick’s healthcare. The insurance company said I made a mistake and they refused payment.  Now I am responsible for this large bill and the story is long and drawn out and right now there is no resolution, but I do have the Attorney Generals office working on the case and they are pretty confident in the outcome.

When you are taking care of someone with a brain injury the insurance companies will fight you for a very long time because from their cubicles they don’t understand what is taking so long for this person to get well.  I have many stories like this but I won’t bore you.

I have been trying to get Nick into long term treatment again.  He has come so far and is doing so well that I know if he can be in therapy all the time he would make big strides in his healing.  It is a BIG uphill battle but I need to try.  The place we are working to get Nick into is called QLI in Omaha Nebraska. www.qliomaha.com  They were recommended to me by more than one resource so that is where I am focused.

I have been interviewing other families about their journey with a loved one with a brain injury and so far the stories have been all over the place. Some earth shattering sad and some pump up the volume fantastic.  One theme though is that everyone lost everything.  Their money, their homes, their lives as they knew it.

It is a scary place.

Things happen because you spend so much time in battle with the insurance companies all the rest of your responsibilities get lost.  People in your circle can only hold you up for a little while and then they need to get back to their lives and like I said brain injury recovery is super slow. 

The entrepreneur in me is refusing to go that route.  I woke up the other day and said “Fuck that Noise” I will not succumb to someones reflection on how this should play out and since then I haven’t been able to take a full breath :-)

Panic attack?  Maybe. 

When I was interviewing an awesome mother of a 22 year old daughter with an anoxic brain injury, I heard about a personal training studio called Pushing Boundaries in Washington state. http://pushing-boundaries.org

 I am seriously considering gleaning as much as I can from this studio and possibly sending Nick there for a bit so I can hopefully with a little luck open up a studio like that here in Chicago. I had worked in the gym industry for over 17 years and have developed programs before why not try now?  Why should I let the insurance companies beat me into the ground. Why not be the proactive entrepreneur that lives inside of me and create a space, program, experience that I want for my son.

Now onto some milestones:

Stander arrived at our home and Nick has been standing in it and making great strides!  His muscles in his legs are firing which means his brain is sending messages.  His trunk is getting stronger which means he is getting stronger overall.  If he ever learns to hold up his head on his own he could begin learning to walk again.

He passed is swallow study so we are eating food by mouth a little and it’s going real well.  Next chewing and building endurance because it is hard to eat after not having solid foods for 7 months.

Nick will be receiving botox injections in his wrists and his feet which will help with spasticity and he will be able to unfold his hands and we can work on getting them working again.

He is going to have a 3 day EEG to make sure he doesn't’ have seizures so he can be taken off this medicine that clouds his nervous system a bit.

We are meeting with a company next Wednesday to get Nick a communication device he can use by scanning his eyes.  I am very excited for the possibility to communicate with Nick on his own terms.

Lastly, our friends who own the Candlelite in Chicago are having a Night For Nick on August 8th from 5pm to 2am.  All proceeds from buying yourself drinks or dinner or both go to Team Nigro and will be put aside to purchase a Ford Transit Connect Van that we already have in the works.  So if you are around and you want to do a good thing and have some good food in a great atmosphere come on by!!!!  Here is the website so you know where to go

http://www.candlelitechicago.com

Love to you all from our family to yours.

Applesauce Miracles and the Gnashing of teeth

On May 21rst Nick, in our backyard, began to swallow normally again.  I don’t know why I decided to feed him applesauce at that moment.  I think it may be because he looked slightly different.  More alert and engaged.  I grabbed a spoon and a small amount of applesauce and placed it in his mouth.  He started rolling it around on his tongue and he had a ever so slight smile on his face.  Then he started making sounds of delight.  Then he swallowed and looked to me for more.

I went nutty.  I did a little dance and I also immediately filmed it on my iPhone in case this was a one time event I wanted evidence.

He did it again and again.  It was our Applesauce Miracle.

When I showed it to the speech therapist she immediately set up a swallow study which means he will eat something under her guidance and they will film where it goes internally.  They want to make sure it goes into his stomach and not into his lungs which would obviously cause big problems.

With this new happening I called Grandpa Joe who since Nick lay very ill in the hospital would tell him that one day he and Nick would eat French Silk Pie together.  French Silk Pie was one of Nicks favorite pies.  One week after I called Joe he showed up at our house with a slice of French Silk Pie and Apple pie (another fave) and Nick had his first tastes.  It was beautiful to watch.  To know that Nick months ago was laying on a hospital bed full of tubes hearing his Grandfather whisper this promise to him and today being able to witness a promise kept there are actually no words to describe my feeling of that day….there are only feelings.

Completely on the other side of this phenomenon of becoming more aware is Nicks frustration of not being able to do what he used to.  You can see Nick try so hard to move his limbs or speak and nothing is going the way he wants to so in response Nick has been grinding his teeth LOUDLY.  So loud in fact, I have run across the room to check to see how many he has cracked in half.  So loud that his therapy team has jumped.  So loud that it wakes me up out of a sound sleep.

Nick is frustrated and I am sure angry and for him this is the way to lash out.  To do something that causes a great reaction around him.

When Nick can’t sleep which is something that has been happening again, he cracks and grinds his teeth.  Yes there are small chips happening and no there is no way to stop it.  I have him chewing on rubber teething things that therapists use to teach chewing which does stop the noise for a bit but I can’t stand there and hold it all day and I can’t rig it to keep it in his mouth because he may bite off a piece and choke on it.

So I try with all of my might to practice non attachment.  I say over and over in my head that this is Nick’s life.  This is Nick’s journey and those are Nick’s teeth.  I can’t proclaim to know all the answers.  I just whisper that it will be a bummer when he is walking and talking again to have no teeth.  It doesn’t work.  Nick is very independent and if this is his only way to have control then that is what it is.  I did ask the neurologist  if it could be brain related and he said there are two theories.  One is that it’s a pattern from where his brain is damaged but then why hasn’t he done it all along. Or two, it is as I say, frustration.

Either way it sucks.

On a positive note our family was gifted a Stander for our home!!!! A wonderful human being who has been reading my blog was so moved to act.  She called me and asked what I was in need of and I told her I was working on getting a Stander for our house.  A short time later I received an email saying it will arrive next week!  Amazing right?!!!!

With this wonderful gift Nick will be able to stand in short bursts everyday.  This means his feet will be planted on the ground giving neural feedback to his brain that this was something it had done before and lets get moving to make a path to do it again.  It will also allow him to get stronger.

More good news is that a small and mighty group of folks have created “Nights for Nick” which was birthed from my gal pal Jackie.  She emailed different folks to see if they would do something in honor of Nick and people have responded.  First there was a night at Fat Cat tavern not to far from Inspiration Cafe which was hosted by Sarah and I heard was a reunion of sorts of old Inspiration Cafe folks.

Then there was a lemonade stand and a sidewalk sale hosted by different people on Summerdale Ave and that was a big success.

The following day was a fun fair held by two young men and their families in Oak Park which had a dunk tank and homemade games and signs and tickets being sold.  They were the most successful so far and I get to meet them today in person which Nick and I are looking forward too!

And there was one of the first Nights for Nick which was a private event held in California given by my childhood friends.

All good things.

I will end saying I have 21 bruises on my legs and about four on my arms and actually one on my palm from wrestling the 90 lb wheelchair in and out of our car when I need to take Nick places.  This has led to my rethinking our mode of transportation and we are leaning toward a Ford Transit Connect XLT wagon.  It is a small heavy duty van with windows and it will allow me to still get Nick in the front seat but I can then pop the chair in back if I get a small ramp. We won’t have to get it tricked out in anyway which will save us about $20,000. Nick and I have some road tripping to do so I think this will be our best bet.

Also, thank you to all who have recently donated to our youcaring page!  The money came just in time because our insurance company is now denying things left and right so I am paying for some big ticket items out of pocket.  The only piece of the youcaring page that I have not solved yet is getting everyone a thank you note or email.  It is just all too much trying to juggle.  I am really really hoping that everyone knows how grateful, deep in our guts grateful ,we are to be supported and loved by so many.

The Scream

This morning I walked into Nicks room like I do every morning to check on him and found Nick staring ahead mouth wide open, but with no vocalization and his body was rigid like a board just like the picture “The Scream” by Edvard Munch.

https://en.wikipedia.org/wiki/The_Scream

I quickly jumped into action massaging his legs his arms his feet anything to get him comfortable, but nothing worked.  I then grabbed a sponge with a little water to see if I could get him to drink which would at least got him to close his mouth for a minute, but he went right back to his silent scream.

It was awful.

I called Perry and Perry did what he always does with Nick and he began to speak in the most quiet tones and then he put his forehead on Nicks forehead and stroked his hair asking him what was wrong in those tender tones.  Nick locked eyes on Perry’s and slowly like one would unravel a sweater by tugging a thread Nick released whatever what was holding him in panic.

It was insanely moving.

I haven’t written in quite some time.  Not because everything has been scream worthy ,but more that we have been working extremely hard and the highs have been really high and the lows have been really low.  I just have so much to say about it that I paralyzed myself from writing anything.

I will tell you the high points.

Nick finally received a bed that we have been asking for since January.  Because of the work of his former physical therapist and his doctors and after writing letters and jumping through hoops.  I received a phone call that went like this.  

“Hello, Mrs. Nigro? This is Linda from Hill-Rom and I am pleased to tell you that the bed you requested was approved by your insurance company.” (This bed costs $18,000)  She went on to tell me how unusual it was and rare to have such a request granted.

We also solved our transportation issue in a more reasonable way since we don’t have $40,000 for a handicap accessible van just lying around.  There is a company called Access Unlimited that creates custom made parts to fit in your current vehicle which essentially creates a lift to transport your loved one from their wheelchair into the car.  Check it out here:

https://youtu.be/r9O01Ds4cvs

A side note and a thank you to Chris the guy that built our ramps.  Chris was a stand in for Perry when I needed to get trained virtually on how to use the equipment.  He was an angel because of his handy dandy ways he knew what the heck the trainer in New York was telling us via FaceTime .  Chris would then translate to me what was being said and directed me accordingly. Everyone needs a Chris in their life!

We finally received approval for out patient therapies!  Nick now goes 2 days a week to Swedish Covenant Hospital and he has been working with a PT, OT and Speech therapist all trained in nuero-rehab.  This came about after calling the insurance company and basically pleading my case since they only approved Nick for ONE DAY of rehab in the beginning.  I finally got a call from a nurse practitioner named Andrea who said that my file came across her desk from someone that I spoke with and she was going to be our advocate.  She has been amazing.  Truly amazing.

We found a bike for Nick called a Theracycle which allows Nick to pedal while sitting in his wheelchair.  It is tough to get him strapped in and going but after the first minute his body relaxes and his muscles let out a long sigh of relief. We were originally shooting for something called a Quadricycle but it costs $18,000 (I know weird right? Just like his bed) so we settled for a $2500 mechanical bicycle until we figure something else out. 

Nick has been receiving Thai Massage by a friend of mine Allen Walker who is my Thai therapist and I just knew that Allen would tune into Nick energetically and I was so spot on with this.  He and Nick have these amazing conversations.  Allen speaks and Nick responds with his body and Allen just keeps the conversations going.  It is really something to watch. 

Penny still comes by on a regular basis to massage Nick’s wrists and feet and Marty a physical therapist comes by weekly to work on Nick.  She gives me an assessment of where she feels he is at and some goals to work on that week. These girls are angels I tell ya!

Nick’s former co-worker has been visiting weekly and its been wonderful.  They have so much in common from music, anime, art, video games.  She isn’t fearful of his twisted body or that he can’t speak she just plunges right in and picks up their friendship where it was left off that fateful afternoon on October 31rst.

His other friends bop in and out of our home which also makes Nick extremely happy.  One of the last visits was on his friends Ricky’s birthday.  Ricky told me he couldn’t celebrate his birthday without Nick so he brought a tribe of Nicks buddies and stayed for the afternoon.  Ricky picked up Nick’s guitar and started playing a song that they used to play together when and Nick literally picked up his head off the wheelchair back and turned and looked directly at Ricky.  We were all blown away by this.  You can tell that Nick recognized the song.

My friend Paige had been diligently working on getting Nick therapy dogs to visit our home and she has been very successful!  Nick has been visited by a registered therapy dog named Jake.  This also inspired Zen to bring over her Bernese Mountain Dog Levi.  You can ride Levi because he is that big, but he was amazing with Nick.  So gentle and patient he is a natural therapy dog.  

I have friends who I call “The Crowes” (it’s their last names :-) that live down the street from me.  I see them weekly they run errands, massage me, paint, bring their dog over to sit on Nick’s lap. Wonderful people.  Lisa one time made my father in law laugh so hard that now when he comes to visit me he asks for her. It is sweet.

I am still being fed regularly by Tina and Rose and Christine has been coming over to cut Nick’s hair and my hair and she always is bearing gifts of clothes, do dads, products who the heck knows what will be in her arms next.  Mostly, she is  my personal comedian because she is a gifted story teller and she makes me laugh.

Jackie is up to her magical ways of fundraising again.  You remember Jackie because she set up our youcaring page. Which I can’t thank people enough for donating.  

https://www.youcaring.com/the-nigro-family-463208


Jackie has created “Nights for Nick” where individuals or groups of people create their own personal event and raise money.  So far our ramps have been paid for and Nick’s medical bills for nutritional counseling and tests have been paid for but we are shooting for his car lift and bicycle and to get a stander at home so Nick to stand up. 

Tina and I are still trying to figure out how to create a family foundation so we can create on going events because as you see this whole journey with Nick will be in the millions and that is a lot of money to raise. I am trying to get Nick into long term programs that specialize in anoxic brain injury and I know its hard to get the insurance companies to cover it so I may have to supplement part of it.

There is more to tell you but I have to go take care of Mr. Nick.  I just want to say one last thing to my boss Miracle Matt.  I couldn’t have any peace of mind without your generous gift of space and breath.  Because you gave me some time to wrap my head around all of this I can function and fully participate in Nicks miraculous healing.

Thank you Thank you Thank you.




One month of baseball bats

Hey Team,

Long time no see!  We made it home :-) and it went the opposite of what I was wishing for, well, at least some parts of it has been.  As you can see in my title of this blog post I would describe our homecoming as me walking down a street in a neighborhood that I know very well, and am comfortable in, when four thugs jump out of the bushes and beat me to the ground with baseball bats.  Yep. Baseball bats.

Sound dramatic? I can’t help what I feel.

The first few days home were a rollercoaster ride and I actually accomplished to do everything wrong and had endangered Nick on a few occasions even after I was trained so well by the amazing staff at RIC.  

*I gave Nick double of a med one day and didn’t realize it until he was vomiting and crying and in a complete panic which of course made me cry and be in a complete panic.

*The bed they sent to our home was NOTHING like I was told and when the staff at RIC tried to rectify the situation you could see the communication paper trail was lost and I needed to make do.  Which I have, but one caveat to the bed is it doesn’t raise and lower the same so in a transfer the first week Nick and I missed the mark and in slow motion we landed on the floor.  I basically got super sonic strength to hold up his deadweight 125b body and I guided him to the floor with pillows around him.  

Thankfully, we know own a mechanical Hoyer lift so I was able to lift him off the floor and from that day on it has been Hoyer lift transfers only, which for Nick is nice because its like sitting in a little hammock as you move about the room.  For me its more complicated and time consuming, but it is better than the floor.

One side note though I did find a sling/belt that goes on over his clothes that looks like underwear and has good sides to hold onto so now I can put his knees against my knees and move into a deep squat and transfer him physically so that happens sometimes now too.

The second week we were home besides the construction workers being here everyday cranking out the most beautiful bathroom.  We did meet our home health care team.  A few things about that.  One is only one person on the team had worked with someone with a traumatic brain injury. Nick was anomaly.

  Two, we only received 3 total visits (we got three more after)  that means Nick no longer has any Physical Therapy, Speech Therapy, Occupational therapy or a nurse to come by which is where my baseball bat moment came in.

*swear word alert…..

“ARE YOU FUCKING KIDDING ME?”

Yeah, basically I am doing everything.  Which I still hold gratitude around it but it came out of left field.

Some of you are asking, “Where did Perry go?”  

He is still here, but not here day to day because he received and opportunity to work at a full time temporary job at Northwestern University’s library.  It is what he has been going to graduate school for and yes, we know the timing of it sucks, but the poor guy had to give up a year long fellowship to London that he worked so hard for.  When Nick got sick, Perry was called into his final interview for the fellowship and had to bow out which was utterly heartbreaking for me to watch because if you know the Nigro’s London is one of our favorite places and after 26 years with the Chicago Police Department doing what he had to do for our family, it would of been a cherry on top moment!

Okay, let me head to the land of positivity because there is much of that thank God.

**The ramp fairy came to my home and put up temporary ramps (permanent ones happen this week) so we are not trapped in our home.  Thank you ramp fairy.

**Nick and I have rode the trains and took the city buses testing our to see what is possible and because we live in the great city of Chicago everything is possible.  It just takes longer and a bit of planning and the occasional panic moments when the gap at the train stop is wide and people are breathing down your neck to exit, but I will manage it the more I do.  I also won’t, if I can help it, travel during rush hour.

**A friend for her birthday had an event where people brought gift cards for our family instead of bringing gifts and they were delivered by one of my soul sisters and we opened all them and danced with celebration which is fun to watch since we are both dancers :-)

**The bathroom is complete and the men and women who made that happen were god sends…literally.  Nick has been able to get showered in a space that was perfectly designed for him.  In a chair that was made for his condition so he is safe.

**Nick has received massage therapy, music therapy, and pet therapy from my friends and one of his guitars was restrung by my friend “B” and when he played it for Nick it was like angels fluttered into the room because the tone of the guitar was so fantastic!  Nick was receiving kisses from a little wiry dog named Bella who sat on his lap while music played throughout the room.  It was wonderful.

**Food has been delivered to us.  Essential oils delivered to us. Eggs from my chickens! delivered to us and best of all

<3 Love has been delivered to us.

** Nick has gained 3 pounds we now have about 35 more to go but YaY for the 3 pounds since his gastro paresis still sneaks in every once in a while.

Lastly, I will leave you with two beautiful things:

One is that I had a meeting with my boss whom I have always called Miracle Matt. When Nick got ill I had two jobs.  One I lost because I couldn’t do my job and the other is with Miracle Matt.   As Matt and I talked about how it is now near impossible for me to do the work that I love with his foundation and I began to weep (I wasn’t planning for that to happen because I wanted to be more professional) he looked at me and said, “Family comes first” That he cared for me and my family and Nick’s journey has touched his life too.  He said that I can just chill out for a moment and take a breath to figure out how to navigate this terrain and I wouldn’t lose my job……thank you MM.

And then another powerful moment from this past week.

When Nick was taken to St. Francis hospital in critical condition and the doctors were trying to save his life, the emergency room looked like what you see on television.  Doctors and nurses yelling at each other, pulling out every trick in the book to save Nick as he was writhing on the table trying gasping for air watching his body begin to show signs of brain death.  Things were beeping, and hissing, and the noises of others suffering in other emergency stalls.  I was surrounded by my family.  Perry and I were messes and a nun showed up.  Her name was Sister Hanna.  I like nuns.  I have said before in interviews about my work with Inspiration cafe that nuns had saved me so when I saw her I felt like a  holy sister walked in.  The tricky part for me was welcoming her or embracing her and still honor my husband Perry because he no longer has a faith.  He has said during Nick’s illness that if he got better it was because of Nick and science.  I don’t believe that totally.  For me its God, Angels, Nick and Science. So you can see when Sister Hanna appeared it caused a bit of surface tension and one that I didn’t want to have to navigate at that particular moment. 

I told Sister Hanna all of this and she stayed present.  Not preaching, but praying silently and stood every vigilant even when I tried to push her away.  The more I pushed back the more she held space for the Holy Spirit to enter and ground and soothe my soul.  When the team working on Nick realized he was way more critical then when he came in and he needed to be on a heart and lung machine they made arrangements for him to be transferred but the only places that had heart and lung machines were in Libertyville and at Resurrection and the docs at Resurrection which was the closer hospital weren’t comfortable taking him on.

I cried.  Nick would never live that long to travel to Libertyville.  Sister Hanna grabbed my hands and my sister Susan’s hands and started to pray.  As the world whirled around us she prayed for Nick to be held in God’s hands and for Nick to survive the journey and to make way for the best hospital.  As Nick was wheeled to the ambulance I heard over the radio that the Resurrection team changed their mind and Nick could go there.  It was such a sweet and poignant moment for me and I wanted to go hug sister Hanna but I had to be with Nick and my family.

This past week I took Nick back to St. Francis to find Sister Hanna.  We did with  the help of a security guard.  It was a perfect reunion, for her and for us.  She had said that it is rare that she ever finds out how the story ends even as she has sat at many of bedsides with many families.  Such deeply emotional and intimate moments that she gets to witness.

Here is the powerful stuff…..

When Sister Hanna walked up I clutched her tightly and was so full of emotion and she was the same.  When she said hello to Nick he actually smiled.  This was unique because Nick rarely smiles since his injury.

 Sister Hanna had to walk away for a minute and when she was out of ear shot I said to Nick, “hey that is amazing that your recognized Sister Hanna because you were unconscious  when she was with us.”  “Did you recognize her spirit?” “Is that how you knew her?”

Nick looked me directly and in the eye and in the most quiet voice says…

“Uh, Huh”  which is our version of yes.

I about lost it right there ,but I knew at that precise moment in that very second I was surrounded by all who have come before us.  All the angels and saints and god and everything that is good.

When Sister Hanna came back I told her about all that I have been learning from Nick and how deep his and mine conversations are on the deepest soul level and she then laid on her last bit of wisdom of the day.  I had said to her that people pray for him to be whole and healed and I do that same, but then I said, “what if THIS is whole and healed?”

She shook her head and said, “Nick is a perfect human being right now.  He can give love and receive love and that is all we really need”  That is all we really are…..LOVE.  We as humans add all the other bullshit on….she didn’t say bullshit…that is all me :-)

Think about that Team Nigro….

What if you were to live knowing that you were perfect right now just as you are because you can give and receive love.

Our $349,000 Day

As many of you know I received a call from the billing department of the hospital telling me I still owed money from a bill from fateful day of October 31st.  The day Nick went into cardiac arrest at our home and the day that shifted my family and all who are connected to us.

The clerk told me how much I owed and I asked what the total bill was and she said $349,000 and some change.  I stop her and say, “oh, you are adding all the days that we stayed at Holy Family too correct?”

She says No.  This bill is just from one day.

Wow….one day.  Thank you Mather Lifeway’s for employing me and allowing us to have insurance. This phone call would of been quite different if I never got that job.

You do know me well enough to know that I don’t put price tags on lives that of my sons or anyone in my family.  Lives are precious and really have no price tag it is more about the folks that aren’t blessed to be where I am in the moment.  I could lead this blog post into a whole political diatribe, but I won’t.  It is more about what I have witnessed as we move through these waters.

I have watched families pack their bags up early from the hospital because their insurance company has decided that their loved one has been treated enough.  I have seen families beg for various treatments because they know it might help but have been refused because its isn’t part of their insurance plan. We ourselves are trying to get a hospital bed that is better for Nick than what is normally given and our doctors had to write letters after letters basically explaining why someone with a traumatic brain injury deserves a bed that will help him not get bed sores.

Please know that our case managers root for us, however people in cubicles, who work for insurance companies that don’t even know our names make all the choices of the health and fate of our loved ones.  

As we near the end of our journey at RIC I am confident in my abilities and Perry’s abilities to help our son.  I have enough human resources to make things happen and will try alternative ways of healing.  I have been proactive in Nick’s recovery, and in part because I know there is more than one path to healing and I have witnessed miracles.  I am grateful that I have always attended to this problem with eyes wide open and I with a humble heart.  It is never lost on me that my family is held up and supported by loving human beings of which we know we can never fully repay and we know that all of you are doing so with open hearts as well.

Nick is ready to leave the rehab center.  Perry and I can feel it.  I think he needs to integrate what he has learned before he can move forward.  I also think he needs to know that he has his home still.  His room.  His friends.  His music and the smells of his world.  I can’t wait until he is able to eat again.  His friends parents have all kinds of dishes they want to bring over.  Nick has the greatest group of friends from many different cultures.  He has been promised rice soup and pad thai and bulgogi and a handful of others I don’t know how to pronounce.

Nick is in the middle of something called “Serial Casting” 

http://www.rainbowrehab.com/RainbowVisions/article_downloads/articles/art-fa12-therapy_serialcasting.pdf

The cast is currently on his hand.  When it was recently taken off  to have another one fitted his had was open and his fingers were no longer curled.  It was quite amazing to witness.  Now he will wear one more on one hand to get it to neutral and then we will begin the other hand.  I keep telling Nick we are doing it so he can play guitar once again.

Before the casting Nick had botox injections in his arms to release the muscles from spasticity. https://lifecenter.ric.org/index.php?tray=content&tid=top102&cid=2289

Perry and I are buying a van for Nick so we can get around.

http://www.mobilityworks.com/Commercial/commercial-transit-connect.php


We have had construction guys come to the house to plan out demolition of the first floor bathroom and the ramps that need to go in. 

We are buying rehab tables and shower chairs and all the supplies we need to take care of Nick.

He was also fitted for a wheel chair similar to this but custom built for his body.

http://www.sunrisemedical.com/manual-wheelchairs/quickie/tilt-in-space-wheelchairs/iris


Yes, we have been quite busy.

Let me also say that Perry and I are very proud of our daughter, Nick’s twin, Emily.  She has been amazing through all of this.  After, seeing her brother struggle so much she has ramped up her own life a bit.  She has always been goal oriented and moving forward, but now she is really doing some deep inner work which is beautiful to watch.  Perry and I are always in awe with how Emily moves through her life she is one of a kind.

Keep holding all of us in your prayers, good thoughts, and cheers when you clink glasses of wine.

We appreciate all of it.


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!

Random thoughts

You do know that I have no idea what I have written before in my blogs.  This is good so I can just free write but it may be frustrating for you the reader because I probably repeat myself.  My hope is that if I do repeat myself that I have a new spin on an old thought or experience or idea.  Do I?

When Emily was here and we went to a restaurant down the street from the hospital.  It was one that served very healthy dishes that were full of flavor.  I thought that when Nick gets better I need to take him to this restaurant to try it out.  In the middle of the meal I had to use the restroom and I saw that they were upstairs.  About mid way walking up the stairwell I got really pissed.  I started thinking how I am walking up stairs and that Nick may not walk up stairs again and to make matters worse that if Nick had to use the bathroom when we were at this groovy restaurant we would be shit out of luck because he couldn’t get there because it wasn’t handicap accessible.

Mother Fuckers

That is when I saw the elevator across the way from the other stairwell and I had to check myself and my attitude at the door!

Yeah, that now happens all the time to me.  I begin a thought process with “I want to take Nick here” and then I realize I may not be able to.  I do it unconsciously all the time.  What irks me about this thought process is that I go right to limitations right away.  My friends old and new who have all types of physical limitations would be slapping my hand right now.  They don’t fall into the “oh poor me” category.  They just do shit all day long and make it work.  I am sure at one point they didn’t think like that they were reminded of their limitations  and then they eventually learned how much potential they still had.  They weren’t put into a box they too could still play sports and travel and to fall in love.

Just a few days ago a man walked into our room and said he was sent by my cousins.  He came to give encouragement to Nick and myself.  He told me that he lost his leg and part of his tush in a construction accident.  Here he was standing with his crutches with one leg telling me incredible stories about his journey.  He wanted to let Nick and I know that there are all kinds of sports teams that Nick could join once Nick was released from the hospital.  It was very cool hearing about possibilities.  He then told me about his family and how he met is wife AFTER his accident.  Someone fell in love with him warts and all.

That is really all I want for Nick.  I want him to be able to participate in life, do things he loves, and to maybe one day find someone so open hearted and lovely he can share his life with.  How friggin great will that be.  I have met so many people at The Rehabilitation Institute who have told me their love story.  The story of how they found someone AFTER their accident.  It exists people!  Individuals who aren’t caught up in how someone looks but in how someone lives.

Another observation that I have been having is watching individuals deal with what is happening to Nick.  There are many people who struggle with his situation, but their struggle has nothing to do with Nick.  It has more to do with their own fears. The fear of ending up dependent on others for your welfare.  The fear of not having control of your bodily functions and being judged.  The fear of not being successful as the world sees it.  The fear of not being as beautiful, handsome, capable as one once was and how you will be loved less for it.

My question to them is always….Is that how you are?  Do you need to check yourself?  Do you see my son as “less than?”  I don’t say it out loud, but I do think it.  I am not here to heal their journey I am only here to heal my own.

Today when Perry came to the hospital he told me he went grocery shopping.  I love when he does that because I know when I get home there will be 100 options to choose from, but its different now.  It is different because Emily and Nick aren’t home.  Part of Perry’s shopping experience was always more for the kids and what they would like to see in the cabinets.  Little things like their favorite snack foods and drinks to ingredients to their favorite meals and once they saw them they would know what was coming that week.

Perry said today, “Shopping really isn’t fun anymore for me.”

I get that.  We were basically punched in the face one day and left to get up off the floor.

We just have to remember that we will create a new normal.  We will do it because we as a family love each other so much that we will make it work.  We will find a new way to co-exists with each other.  Our extended family and friends all have the same idea and with that Perry and I and our kids know we are the luckiest.

Medical update

Hey gang, long time no words!  I decided to produce a twofer tonight.  One blog post will be medical and the next one random thoughts.

Nick as you know, had brain surgery but actually nothing touched his brain we should really call it skull surgery.  He had his skull opened and fluid was released and then the surgeons washed his brain with saline solution.  He then had to lay flat for 4 days and wear an oxygen mask for 24 hours pumping 100% O2 in him so the nitrogen that replaced the fluid would naturally disappear.

Cat Scans were taken to see if his brain that had been pressed on by fluid would spring back up at all.  It did a little, but not as much as the doctors wanted.  Nick from his traumatic event has lost some size in his brain.  I am banking on him making up for some of that because he is so smart maybe his more compact brain would still beat my brain any day of the week.

Nick did start on a new Nuero-Stimulant which they usually use for individuals with Parkinson’s.  It is called Sinemet.  It helps with muscle control and after one dose his arms relaxed a bit.  However, if you read the side effects they are less than pleasant so this is the dance we do now.  What is the best for Nick to get to the next level.

We have two looming challenges right now.  One has a potential to be life threatening and the other has the potential for a bit of sadness.  The first is Nick has Gastro Paresis basically his stomach has lost the ability to digest food properly.  This leads to fermentation in his gut which leads to nausea and gagging for hours on end.  Pain and discomfort and potential malnutrition which of course as you all know could lead to death.  

The second challenge is his contractions of his arms and his feet.  If these don’t unwind he may lose his ability to play his guitar which he has loved and he may not be able to walk if his feet don’t relax.  Both of these are sad for sure but don’t scare me as much as the Gastro Paresis does.

Nicks’s arm was casted last week for a custom splint because he has broke through all the splints he has been given up to this point.  He is very strong and really hates being strapped down.  This is always a challenge because until his brain allows his muscles to relax we need tools to shape his arms and feet to stay in the healthiest state.

He did get all those staples taken out of his head and it looks really good.  I am hoping that when his hair grows back it will just cover it all up.  I fortunately have a childhood friend named Clara who happened to come into town to visit me and she LOVES all kinds of medical gore stuff so she gladly stood with Nick as they plucked the staples out if his head.  Thank you Clara.

In fact, this week has been full of wonderful visits from friends new and old.  My usual crew of Lisa caretakers have been busy so a new set of people have shown up to fill in the love gaps.  I have had ugly dolls delivered, pizza delivered,Chinese medicine potions delivered, Bodywork for Nick, Prayer books were delivered along with a Rosary. Oh and once when Nick vomited and I was out of the room …Penny caught it in her hand :-)  Now that is love don’t ya think!

Other celebrations in the medical realm without getting in too much detail is that Nicks bodily functions are working properly so even though he is challenged in some key areas his body is still kicking some ass!

This week I am going to chat with the Nutritionist and I am going to ask for a consult from a Gastroenterologist. Hopefully his splint will be ready and we can still pray that his new nuero-stim medicine will reduce his muscle spasms and not create new problems.

One thing I have been doing is remembering how far we have come.  Do you all remember?

So really, I don’t have much to complain about now do I……

Finding a message from yourself.

As Nick lay sleeping in his hospital bed I searched my back pack for something and I found some writings that I had done a while back and it spoke to me today as it did when I wrote the words.  Here it is:

“Be mindful of your self talk and the rules you create for yourself and of others.  Place no judgement on if something is good or bad.

Suffering is Suffering is Suffering.

How does one strive or thrive living the middle way.  It is a question I ask myself often.

I sit crosslegged on the floor gazing at a candle aware of my breath.  My thoughts dance in and out.

Will it come?  Will the answer come to me?

Suffering is Suffering is Suffering…..we all do it.  I heard it said it is a gift to be unwrapped.  I hold mine in my lap.  The middle way is far from me.

My knuckles turn white and my hands cramp holding on to who I am in the world.  Who others see, who are you without the parameters placed upon you from the world?

What if the current is too strong?  What if I get too tired.  What if I get stuck on a branch that floats in the river?  What if I drown?

Fear…Faith…..Fear

Will the middle way be enough?

I latch on to the 8 worldly concerns like a blanket.  It is so soft and it has been my companion for a long time

Let me release one hand from the bank of the river and let my hand float to feel the current.  It is okay.”

Here are the 8 worldly concerns taught in Buddhism

-Wanting gain and avoiding loss
- Wanting praise and avoiding blame
- Wanting fame and avoiding insignificance
- Wanting pleasure and avoiding pain


I know what you are thinking right now.  I really do.  You are thinking “what in the hell is this chick writing about in a blog that is about her son’s traumatic brain injury”  

Well, you may have a point there however, I think I have been preparing for this moment.  The suffering that has enveloped our family has taken me down a wondrous mystical path.  One I would have never chosen, but one that lay before me allowing me to trust that if I stay open and curious and don’t become full of fear and contract,  the nuggets of beauty that I will experience will explode my heart in one million tiny pieces.

P.S. Nick pulled through his surgery and the fluid has been released from his skull.  His brain hasn’t fully puffed back up to fill the space which is a bit sad because it reveals how much trauma his brain has suffered.  On the other hand no one knows how the brain completely works so even with the damage that it has endured Nick may re-route his neurons in a different way and he will create a different healing path.  I have prepared myself for all outcomes so I am at peace.



We are Soaring and then we are Grounded.

Yesterday was one of those days full of the full catastrophe.  You know the one that begins with immense beauty and ends with tears because you are full of fear.  My friend Jackie calls it “multiple truths” and she and I write about these days often.  Let us begin:

On my way to the hospital driving down Lake Shore Drive the sunrise was crazy.  It was full of oranges and pinks and the light shone through the bare trees in such a way that was breathtaking.  In fact, I took pics all morning to send to Emily because I don’t want her to forget she is a Chicago girl as she lives her LA life.  I just soaked this moment all in.

When I reached Nick’s room I found him moaning with the saddest face and dry heaving.  He had a small fever and he wasn’t digesting his liquid meal again so it sat in his stomach reaking havoc.  The staff had given him an anti nausea med and I just decided to stop the drip all together.  I cancelled Nicks first rehab session and I told him we were going to take it easy and just do things slowly.

Doctors rounded in and told me that the Cat Scan Nick had yesterday was a little un-nerving.  My stomach dropped because this was a big surprise to all of us because of Nick’s incredible progress.  It looks like there is more fluid and more blood collecting in his brain and a brain surgeon will be contacting Perry and I for advise of next steps.

The rest of the day was actually pretty amazing.  I learned manual transferring and was feeling confident.  I reviewed techniques with the Occupational Therapist to make sure I knew how to take care of Nick when we were home.  We talked about shower chairs and wheel chairs and Nick ended with a Physical Therapy session where he engaged muscles that he hasn’t engaged in a long time.  He then got fitted for new leg splints so they casted his legs with this fast drying temporary cast stuff which was super cool and then our amazing day started to slowly spiral out of control.

Perry came in to take care of Nick and I left ,but shortly after I left Perry told me that they were headed to Northwestern Hospital for observation.  Nicks observation turned into the news that he will be having surgery today January 07, 2016 to release the fluid in his brain.  He will then be put in ICU for I don’t know how long and to be ready as a family for a possible set back before he rebounds again.

That is when the tears came.  

His brain may respond as if it has been traumatized again.  So all the steps forward may disappear in one full swoop and we are back to basics again.

Perry and I are scared and at the same time (multiple truths again) we want this to happen because apparently the brain may rebound and do better because of the lack of pressure and gunk that it has to compete with.

We are still scared.  Because still even now with the brain surgeon team each has mixed opinions.  One says this will be a great thing and Nicks brain will rebound and fill the space and the other surgeon says this is good but he feels it may fill with fluid again.

WHO THE FUCK KNOWS ANYTHING.????

The brain is so freaking intricate and amazing that nobody knows how it really works.  We are basically walking miracles if I had to tell the truth.  The other day when I was standing on the train platform I was watching everyone on their phones or looking at the maps and I thought about how we aren’t anything that we think we are.  That all the frustrations and the wanting of things are just electrical maps firing. We can’t even stand up without our brain saying stand up!  What we really are is a soul essence, that indescribable piece of energy that the great mystics teach.

I am that.  You are that.  Nick is that.

Which is where I am holding my strength and thoughts right now.  Nick once again is showing me he is his own person.  This is Nick’s journey of recovery and I have my very own with my very own lessons.  Our journeys are linked but they are very very separate even if I want to entwine mine with his.

It is my hardest parenting lesson ever and I think it will always be.  I was just the vehicle for this precious life.  I am just the caretaker the steward of this miracle and I don’t know the plan for his life at all.  I just keep saying this mantra over and over in my head.

Release, Release, Release………

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

Lastly, but definitely not the least my niece Colleen and her husband Joey will be meeting their son for the first time today.  Colleen is having a baby today!  Where there is a new life new magic arrives.  Dreams are born and the world shifts a bit and that is where I will dwell.

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.