Sorry to have left you hanging the other day. This blog post will be in two segments, one medical and one spiritual. There is just too much to say and I am not talented enough to weave it together even if it all is one continuous moment in my mind.
Medical: Nick still has some fluid in the frontal cortex of his brain. The neurologist will be speaking to the brain surgeon tomorrow to see if he will check Nick to make sure the spinal fluid isn’t filling the space in his brain. He may have injured himself somehow or when he had his lumbar puncture which caused a leak. However if there is a leak there is a miraculous way it can be patched using his own blood. Stay tuned for the verdict.
Nick has been more awake and aware lately. He even had tears of frustration that crushed me to watch ,but I celebrated how real it was and it is his way of expressing the horribleness of his situation. I have been filming different ways he has been responding since he responds more to his family then he does to doctors so I can use it when staff says he is not responding appropriately.
In fact, when his therapists push him he will just shut down and go into another space and time. I can see it happen. I tested this theory this weekend. There were no therapies for him professionally this weekend, just from me. I was able to pace all of his therapies throughout the day and we did it at his pace. It worked out much better.
Nick has been using his voice more lately with long sighs and the last time the speech pathologist worked with him he responded in a more natural voice. It reminded me of when someone dies and you find an old voicemail from that person which is very sad but fantastic to hear their voice once again. Hearing Nick use his deep voice even if it is just a sigh is beautiful.
I have reached out to some more alternative therapy folks because we are making such good headway lately I need to keep the train moving forward. I am also exploring communication boards and I am learning to tune in very deeply to Nick’s responses. For instance, today his heart was racing and the alarms were going off. His arms were curled tight to his body and in the very beginning I thought he was trying to sit up or engage with me. As I talked to him I noticed him staring deeply into my eyes, but in a slightly different way and I thought I needed to break his body pattern to see if I could trick him into relaxing. So I used an old massage technique of engaging a different part of the body so that persons mind would go there. Just changing focus ever so slightly can make a profound change. It worked and when it did I thought maybe he was in pain somewhere and sure enough I found the culprit. Poor guy was in pain for at least 30 minutes before I caught on. I hate when that happens.
Spiritual: I know I have spoke about feeling very close to God lately. It has been so surprising to me that being in the middle of grief and frustration I can still find those god moments. As things spin out of control all around me I begin to feel myself rooting into the earth and a sense of peace showers over me and I know that in that very moment I am safe. Nick is safe and all is well.
The other night I was sitting in the lobby before going home. I was talking with another mom whose son is down the hall in similar circumstances and as we spoke she pointed out how the staff had been coming and going into the chapel as we were in the middle of our conversation. She told me that staff begins and ends their days like that. I sat in awe. At least 80 percent of the nurses began and ended their 12 hour days that way in the presence of God. I thought how wonderful! The next day I began that same ritual. It is different for me from beginning the day recieiting a prayer from one of my books. The difference is the physical action of kneeling before Jesus, Mary and Joseph which for myself being raised Catholic is my go to crew. In the beginning of the day I mostly pray for strength and grace and at the end of the day I thank them for helping me achieve that.
Grace happens all the time at every hospital that Nick has entered. Somehow his energy attracts people from all different places. Cleaning people just pop their heads in the room and checks on his status to other patients whom are recovering themselves ask how he is. When I say people are praying for Nick all over the world I am not lying. It has been incredible and I am fully humbled by it all. It nourishes me and gives me the extra little bit I need to keep going. It allows me to hold my husband up when he starts to slip into a darker time. Believe me there are times where I want to fold up into a ball and drop into a corner, but it passes. I know it will get harder the more days that go by but right now in this moment I am grateful that I have the strength to carry on.
The other fuel I have is you all. The gifts of food, company, drink and cash has served us all well. The big bills haven’t hit my kitchen table yet but they are just around the corner and hopefully I will be able to not panic and just breathe and keep repeating “all things are possible.”
This moment is all that we have.