May 6, 2019
There is a fundraiser planned for Nick on May 19, 2019, created by the son of one of my long time friends. David Kaplan Perkins (KP) decided about 6 months ago that he wanted to make a difference in someones life and we are the very lucky recipients of this heart felt movement.
The event will be at Uncommon Ground in Edgewater from 1-3pm
There will be entertainment and we will be showcasing art by Nick that can be bid on as a silent auction.
Uncommon Ground - Edgewater Listening Room
1401 West Devon Ave
Chicago, IL 60660
March 10, 2018
I have a blog about our journey on my website www.lisanigro.net. This was the last post I made on Nicks 2 year anniversary.
I have been avoiding this post for a while now. The past few months have been rough for me on this caregiving journey. We are rounding the infamous 2 year mark for Nick's heart attack and brain injury. This is the time when insurance companies write you off and doctors are less enthusiastic about recovery or any forward movement in healing.
This also marks the time when the outside world does less cheerleading because it is hard to see things move so slow. This world wants everything to "righted" right away. We have things to do, people to see, planes to catch we can't be held back with humans in need right now! We need to be cheerful and our lives need to fit into the boxes we have created in our minds for so long. If we stray off that path we have failed. We have put our lives on hold for way to long and now it's our time, my time and I can't listen to one more sob story.
That is how it feels out here in the caregiving abyss. One needs to be healed so the others can feel better about their own lives. I know you want me to say "I am fine, and things are great" because in doing so you won't have to engage deeply. When I don't answer in a super positive way I know you are thinking "Hey Man , don't harsh my mellow."
Can you feel my sarcasm ? Yeah, I have been an angry beast for a pretty long time now. Recently though I have rediscovered the work of Byron Katie, and the Course in Miracles and I completed a meditation teacher training program which culminated in a straight up kick in the ass. All of these teachings as of late are taking every obstacle and turning it into a question for deep spiritual leaning.
I call it the Holy Turnaround. It has rattled my cage and made me really do some deep dives into my anger and my relationships. How have I contributed to my own angst? How have I maintained sub par friendships and what have I really got out of doing that? When are all these obstacles in Nick's care really a call of opportunity? Can I just stay in my lane and trust that in doing so others can step up to their own lives, grow their own selfs, and it is all okay to do so?
All relationships have seasons. I am getting clear on which are alive and which are dormant and which are dead. This is a natural process and I appreciate that even dead wood can fertilize. As I navigate the waters of the secret brain injury club I hear and witness some very complicated life stories and I see the tenacity and strength of families going through the same things we are going through and I am in awe.
Here are some Nick victories:
Nick's wrist bones are not fused and they have movement and can have surgery which will release the tendon so Nick's hands can unfold. We are just trying a few things to make sure that upcoming surgeries will have less complications. We are waiting on guided Botox treatments again and some splinting to stretch things out. How wonderful to think that Nick may have the chance to play an instrument again.
Nick has been eating blended food via his gastric tube instead of canned formula. This has been life changing and a very big Holy Cow moment. The processed foods in the canned formula was slowing Nick's brain down and screwing with his digestion. He has improved in his health so much that the doctors and I are reducing some of his medications. Preparing the blended meals has been very time consuming for me, but it's all just a learning curve and eventually I will have it all down so it won't be such a big deal.
Nick has been painting with Corri who is Nick's caregiver and who is an artist and special ed teacher. Doing art with Corri has allowed Nick to rediscover his arms and how they move. He still has severe spasticity, but he is actually moving his arms more and allowing them to be stretched further which is a victory. Corri also works on communication with Nick which is still unfolding, Perry and I feel we are understanding Nick more.
Nick has been humming more which encourages me and his speech therapist Marja that some sort of words are around the corner. This is in direct relation to his music therapy he gets with Lindsey Baer each week. Lindsey explores all types of music with Nick and he listens deeply and concentrates and then out of the blue I will hear a small hum coming from him. Many times there is a rhythm to his humming so I know he is breaking down some sort of song he has internalized.
Music has been important to Nick so knowing he is making connections in this way is deeply moving to me. I am always trying to imagine what his first words will be and how I will hold the sweetness of his voice so close to my heart.
We are reducing some of Nick's medications as I said before, and this is very encouraging. The neurologist has agreed to explore possibly reducing his seizure meds and he is also allowing me to look into CBD oil for Nick which I have heard from other people with brain injuries that this oil has helped with sleep and with reducing muscle spasms.
Those are some of the highlights with Nick. There are a large load of obstacles on our path simultaneously , but I am trusting in a higher power that some how and some way I will figure out how to tread through those with grace and compassion.
Pray that I keep trusting my inner guidance system. My inner teacher.
Pray for Nick that he does the same. His inner teacher has a big agenda and I am learning from him every single day.
