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.