12/31/2005 New Year's Eve

I added to the page Theo's photo with Santa. We went to have the picture taken following his doctor appointment on December 21 (Winter Solstice). He was so calm and peaceful that day.
Our Christmas was quiet but nice. We were very sad over the holiday. I am really glad it's over. For me, it wasn't so much this actual Christmas holiday, so much as how sad I felt knowing that future holidays will never come to pass. There will be no more Christmases with Theo and so much that I hoped for and looked forward to with his birth will not happen. All the tree decorating, present opening, cookie making, driving around seeing the lights, all the family traditions that we won't be starting with him. Thinking of all those things that we'll never do together made me feel so sad and hurt and empty inside.
We did have a small tree this year and my mom and grandmother brought lots of nice gifts and so did my dad. Theo got lots of cute, cuddly outfits and a new quilt to keep him warm and new books for us to read to him. It was good to have my mom and my grandmother here. We had Christmas dinner and rode around to see the lights on Christmas night. Theo fell asleep on the car ride--he loves to ride in the car. He for sure knows that lots and lots of people love him and that's all the gift he really needs.

Tonight we are planning on staying home with him and bringing in the New Year with him at midnight. He is almost always awake at that hour and we plan on toasting him and giving him the first kisses of 2006. We'll have some champagne and he will have his formula since his last feeding of the day is around midnight. He did get tastes of sugar, honey and chocolate syrup over the holiday--we rubbed a little bit of each on his tongue. He didn't have much reaction to the honey but smacked his little lips over the sugar and the chocolate. I couldn't really tell whether he liked it or not, but at least he got to try some tastes on his little tongue.

I really appreciate all the supportive comments I have gotten from people on email and on the blog about my last post regarding the attitudes and reactions of others to terminal diagnoses and death in general. The support from people who care about us and who have had common experiences, whether with dying parents and loved ones or with struggles with their children with disabilities, is so helpful to me. I am reading several books right now, each a little different, but all having to do with dealing with grief, bereavement and loss, and they all speak of how crucial it is in these situations that the bereaved or grieving persons are not alone, how much the support of others determines how well they deal with the loss or tragedy. Knowing others care about us, empathize and sympathize with us, makes me feel less alone, lessens the pain a little bit. And I know that it will only get worse for us before anything gets better. I know that there will be a time when I won't be able to imagine it ever getting better at all. We're not there yet. I am not looking forward to that time at all, but I am trying my best to be as prepared as I can.

I am slowly I think coming to a place where I am beginning to accept that brain tumors that cause irreparable brain damage and ultimately death--and other tragic things like disasters, sickness, accidents, violence--are not things that God can intervene in--or otherwise He (or She or the Universal Spirit or whatever you call the Divine) would. If I don't believe that, then I can receive no comfort at all spiritually and I don't believe that I could get through this, and all the days that are to come, on my own, without feeling that I can recieve help from some higher power. Harold Kushner the rabbi who wrote Why Bad Things Happen to Good People (and whose son died from a progressive, terminal disease) writes that can believe one of three things about God---that either 1) He is all powerful and sometimes chooses to intervene sometimes not, 2) we deserve what we get and God allows those bad things to happen to us, or 3) there are some things God can't control, things that are subject to laws of nature. Which, in Kushner's view, God created as unchangeable for good reasons--like gravity is a good thing because it holds us all on the planet and keep everything in place, but doesn't get reversed to save a child from falling off the second story balcony. All the things we are taught to believe, if we pray hard enough, if our faith is strong enough, that God can do anything, that nothing is impossible, all those things only set us up for heartbreak and bitterness when they don't come true. Those things cause us--cause me--to bargain with God, to make promises (if only my child will be healed I will do this or that) which is just ridiculous becuase if God was going to do something why would He need to extract some promise from me to do it? To beg God, which is also useless. Those kinds of beliefs cause us--cause me--to only feel abandoned, cast aside, unworthy, alone, angry and then guilty for being angry. Those beliefs cause us --me--to think that maybe it is my fault--maybe I didn't have enough faith. Thinking which then leads to the possibility that the unfaithful are then responsible for teh tragedy out of their lack of faith. I am not responsible for Theo's tumor and brain damage. I would do anything to save my baby and take away all the hurt that he has been through over these past four months. I can hardly believe it's only been four months--it feels like a lifetime. But those kinds of beliefs are useless and dangerous and harmful. And very, very hard to get past. Even when intellectually, I know better. Emotions and desperation have considerably more pull than intellect when your baby's life is at stake and being threatened. And when those kind of beliefs are reinforced by people around us, it only makes it more difficult to resolve feelings of guilt and inner conflict. Do you know that a woman at my job--who I am not at all close to-- actually told me that perhaps it was my doubt that was keeping my baby from being healed? How someone could say such a thing to another person going through the pain of a child's illness and impending death, I can't even imagine doing such a thing. Anyway--I am trying to come to a place of peace, where I can be comforted and strengthened by Spirit. Just my writing all this down tells me that I'm not quite there yet. But the most positive thing I think is that I really believe that my negative feelings are comiong from me, from residual teachings of my childhood that are not serving me well at all now at this most devastating crisis of my life and that behind all these feelings is something else. I think that there is peace and comfort from a Source greater than me and when I am able to resolve my own inner conflict, it will be there for me. Indeed, I am sure that that Source is helpign through all the conflict and searching and confusion that I have been trudging through since August. It's like swimming through mud, trying to get to clear water.

I know that the coming year which is fast upon us will be full of more difficult times and holds a future that I cannot look toward with any hope, except the shred I hold that we can get through it intact physically, mentally, emotionally and spiritually. I know that it will get worse before it gets better, but I know it is possible to get through it--forever changed, but at least intact and still able to live life and find some happiness even if seems impossible at times. I also hope for the continued love and support that all of you have shown us. We wish you all a beautiful New Year of 2006, filled with love and peace.

Love,
Karla