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!