raw and real

The goal of this particular post is to give a raw and real accounting of how a young mother(me) is feeling about her little daughter having a tumor resected from her brain in the next week.

Honestly, Im completely destraught and devastated. Its true, Ive been through this before but never with so much time to wallow and stew in my fears. The first time Kel had a brain tumor it was emergency surgery. The neurosurgeon gave her just enough time to get prophalactic antibiotics and a course of major inflamatories to reduce swelling before diving in and hoping she would survive. This time Ive had a month to stew and overthink things.

The weird thing is that Im still surviving. Still going to work....a major stress in my life and usually the first thing to push me over the edge. Still waking up every day, even though there have been days when I didnt want to. Still pushing on...because no matter how much I just want to spend every waking moment just holding Kel(like she would let me) other people depend on me. I cant let this disrupt everything around me and I have a responsibility to keep my sons life together as well. I know I cant fall off(the edge) because Gage needs me too. I guess he's most of the reason Im functioning as well as I am. Little did I know little Gage would be one of my rocks. In turn I have to be his rock too.

I dont think Ive ever bawled so much in my life. In the car alone those little thoughts pop into my head like: "you only have 5 days left of your daughter, she could die in 5 days." Or the thought of seeing her on total life support again with nurses, resp. therapists and doctors surrounding her puts a huge lump in my throat and makes my eyes well. I guess its more the thought of seeing her hurt so badly that really gets to me. Once youve seen your child with her head cut open and drains coming out of her brain it never leaves you. Its seared into my memory and I will never forget what kind of despair and helplessness that completely encompassed me at that moment in time. I dont want to see that again but I know I have too.

Its honestly the vent(breathing machine) that scares me the most. Last time she would breathe on top of the vent and then let the vent do the work for her. In medicine that meant she wasnt completely ready to be extabated(the breathing tubes pulled out). But they did it anyway. The docs know what theyre doing but Im just really nervous about everything.

Im nervous and scared because I know too much. Working where I do Ive seen too many things go bad. Too many little things turn into big things. And things that were supposed to go according to plan dont, and people die. People die. Doctors arent god and they cant save everyone. Im firm in the thought that when the Lord wants to take somebody he will. And he has....even though it didnt seem like they were sick enough to die or it didnt seem like it was their time. Children die too. Ive never watched a child die, and I dont want next Tuesday to be the time when I watch my own slip away.

Its just been hard having more than a month to stew. There have been blessings that have come from the situation. My faith is firmer, we're leaving our house and headed for a new life with none of the baggage or reprocussions from the last surgery, we'll hopefully be able to make smarter choices and work more on education for Jay and I, my heart is softer, and Ive learned how to be a little more humble.

I would be lying to you if I said I was happy and spiritual right now. Im not happy about my daughters life being handed to some doctors up at Primary Childrens on Tuesday. But this has been a spiritual experience. I live my life for my kids. And to be so close to letting one of them go is hard to choke down. It flat out sucks. I was angry for a while, then I felt defeated, depressed, and a level of sadness no one can understand. Its actually kind of amazing to feel such a deep deep sorrow. I carry it around with me everywhere I go. A nagging light in the distance that somehow means emptyness to me right now. But at the same time I still feel a glimmer of hope that things will turn out for the best. Must be the eternal optimist in me. The realist in me is preparing me for the worst at the same time though.

On the realism note, the neurosurgeon has told us that hes optimistic he'll get a GTR(gross total resection , which means he should be able to resect or take out the whole tumor without disturbing good brain tissue). Dr. Kestle seems to be optimistic about surgery. According to him there shouldnt be alot of "effects" from it either. Ive noticed the docs up there like to focus on the positive and skirt around what could happen just from cutting into the brain. I wont list the possible outcomes from surgery because I tend to focus on them and Im trying to be more positive. I just hope she survives surgery and the critical 24 hours after. Then itll be smoothe sailing for me.

If you havent figured out by now Im worried about Kel just staying alive through surgery. Im worried that something could go wrong and she could code and die. Im worried about these things because there are significant bleeding risks cutting into the brain or any part of the head for that matter. Its just so vascular and she could have to have major amounts of blood pumped back into her. Last time, if Im not mistaken, they replaced her blood volume twice through the procedure. Im worried about anesthesia too. Its going to be a long surgery and the longer shes down the more things can go wrong. I know all too well the miracles of modern science and how well theyre(the OR staff)is prepared to handle any situation. Its a miracle just to have a hospital and staff of that calibur taking care of Kel through the whole thing. Also.....if you havent figured out by now, Im having a really hard time not being able to control this.

I guess the thing thats bringing me the most sadness is the thought that Kels days may be numbered. Its always there, hanging out in the back of my mind. A time limit to things. A time limit with my daughter. Its a very real possiblility and it majorly sucks. Ive only mentioned this fear to Jay when my kind husband is listening to me in the dark at bed time. Im glad hes optimistic and pulls me up in my times of weakness.

So in conclusion to this very long blog post. Im sad, full of sorrow and worry. I just cant say Im totally hopeful about things. Im scared.