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.