Today I found myself reading blogs about cancer, and finding that there were more similarities than differences to Anya’s diagnosis. True, my life is not at stake, but my child’s is, and there are so many of the same emotions swimming in my head. Everything going on now reminds me of when my Mom was diagnosed with cancer when I was in high school.
The first is just disbelief- I have suffered through so much in my life, that this is something I had never prepared for. Losing your mother at 18, and father at 31 with after a long stressful illness, you would think that karma or grace would give me some breathing room, some peace at last. Unfortunately my life it not meant to be that way. ‘Hello, Mr Heartache, I’ve been expecting you…” sings the Dixie Chicks- touché. Oddly though through the despair I feel myself using old coping techniques that I have perfected over the years- they make me feel lazy but they keep me off the ledge, so I am not going to criticize myself.
One blog discussed how others comment that you are so strong- a compliment, but one that just feels strange. Unlike the blogger, who did not feel like she was all of that strong, I know I am. I have gone through to much to back down now. In my opinion people really don’t know how strong they are until they are faced with something awful. The old saying- ‘God does not give us more than we can handle.’ Is a slap in the face, ‘you mean if I was weaker this wouldn’t be happening? Maybe if I have a breakdown God will back off…’ The other saying, that everyone has their own cross to bear- is one I have always agreed with. I always said if the last cross I had was to deal with my weight issues I would lead a blessed life- I wish I would not have said that so loud. One of my first reactions was anger, sheer anger, that I was handed this- I wanted to know that other people who seemed to have a charmed life had something in their closets- alcoholism or crippling debt; then I feel ashamed that I wish ill on people.
I am so afraid. Afraid of the unknown. I am not as afraid that she will die as she will live, and because I push treatment too long, and she will have a heartbeat but no quality of life. Even if Dr. Kays gives us a better prognosis there are no guarantees, she could still suffer a stroke or worse. In that case, what will our life be like? Arwen’s life? And who am I to say what quality of life is? At what point do you say ‘STOP’ while still being able to live with yourself, and know you didn’t choose the easier road because of fear?
Another is fatigue. I am so tired. I don’t have any energy left for anything. The thought of what is ahead makes me even tireder. Recovering from childbirth in the NICU anyone (away from home)? Or worse, planning and attending a funeral while recovering from childbirth? Yay. Rushing back to work while she is still in the NICU states away? Missing out on most of Arwen’s summer, and maybe her first days of school next year? Years of fussing over a child who is always ill, in and out of the hospital, doctor’s office? I didn’t ask for this. I have done nothing to deserve, or cause this to happen.

Today went blessedly fast. I am such an odd place.
The best I can explain is that I have given Anya up to God. I haven't given up on her, but I no longer worry if she will die, even though I don't want her to. If she has a chance at life, if Dr. Kays thinks she has a chance at life, we will give her that chance. If not we will lovingly let her go.
I am excited about the consult at Shands but full of forboding about it as well. I am worried that we will decide to go down there and we will not be back for such a long time that we will never recover from it. I worry about missing out on Arwen's first days of next school year, missing out on so much of her life. I am worried that Anya will come out of this with such severe complications that she will never have any quality of life. Will it be possible to stop before that happens? I don't want to torture her.
It is so hard to decide when to start treatment and when to stop, and I really hope that I can get the answers to these questions.

It has been a month since Anya was diagnosed, and I have about 4 months to go of the pregnancy. I am so tired, not really physically, I was able to take a walk today and felt good- but just emotionally. At work today at one point I just felt very dull, going through the motions, not the worst I have felt since this all started but like I just didn't, couldn't care anymore about anything. Tomorrow is the MRI, then the next the echo and dicussion of results. Every other time I have gone for an appointment I am excited, because it is something to look forward to, but every time I am disappointed, because getting through this is just so far away. Then I get so angry, and restless, and don't know what to do with myself. God knows there is a lot of stuff I could do around the house, but that isn't really appealing, nothing is appealing anymore. I miss my normal life, one without all of the threat of NICU and worsening things. I think one of my biggest fears is to have to spend longer than a few months in the NICU with Anya, or a long time and then if she dies anyway- if she is going to die, I almost want her to go sooner in a way. I am afraid of her suffering, getting messed with so much, and never having a moments peace. I have come to realize that she really won't care if she dies, she will be fine either way, it is us who will be affected. I guess that line of thinking is the only way I can let her go. God help me get through this mess and find peace on the other side. I just keep telling myself that one day I will be happy again, whatever happens.
That day is very far away now.