I keep trying to think of new things to write without sounding too depressed and sad all the time and have a really hard time coming up with anything. We're doing ok I guess. As best we can. Theo continues to do ok. Not a lot of changes with him right now. He has continued to have a lot of problems settling down at night and we haven't been getting a lot of sleep. Some people have suggested keeping him awake during the day, but that's really hard to do since he can't really be engaged. Keeping him awake when he doesn't want to be would involve irritating him, making him angry or upset. He gets upset (and wakes up) when we do anything to disturb him such as change his diaper, bathe him, put clothes on him, pick him up (he calms quickly because he realizes he likes to be held), moving him, etc. And when we do those things--even when they are necessary--it's just really hard knowing that we are causing him any kind of pain at all--whether it's real physical pain or psychological or whatever, he clearly gets upset. We don't want to bother him when he is sleeping or calm no matter what time of day it is. We have had a couple days and nights where if he was awake, he was crying almost non-stop. Those times are really difficult. No parent wants to see their child cry and when it seems there is nothing you can do to help, it's even worse. It isn't always like that, there are times when he is awake and peaceful, I guess it's just that the difficult moments are more vivid and stay with me longer. During supervision for my counseling license, we talked about memories of trauma and how traumatic memories are stored in a different area of the brain than regular memories. When they are recalled, they come in flashes, like snapshots, one after the other, or like a roll of film played frame by frame. So when those moments are recalled, it's with more clarity and impact. Other memories are recalled like the film being played at regular speed. They play out and are stored away again with no problems. Traumatic memories have more clarity and immediate impact because of the way our brains store them. So maybe it's kind of like that. I know that when I think back over these last months, I have many memories that are like snapshots, that come back to me with that kind of stunning clarity. Flashes of the doctor coming in to tell me about the "blood on de brain", riding in the ambulance with Theo and the EMTs, looking down at Theo hooked up to a million wires, Theo getting stuck with needles, Theo intubated, Theo getting chemo, rushing down for emergency surgery to remove the tumor, looking at the CT scan that showed his cerbral cortex destroyed. Those things are always there in the back of my mind, popping up at random moments. They are mingled with thoughts of memories we'll never have, of him growing up, laughing, playing, running, and then there is the continuing heartbreak of the memories of Theo before the tumor. Of Theo smiling at us, Theo just beginning to imitate our sounds and facial expressions. All the new, sweet little changes that were happening more freqeuntly, day by day as he grew. Before the tumor. Even the very day everything happened. That morning, before he threw up the first time, he fed, he laid in bed with me, he smiled at me, laughing up at me, making his little "oh, oh, oh" sounds as I talked to him, Theo moving around, squirming on the bed, happy, joyful. Except we know that there was no "before the tumor" really, it was there from the beginning, growing. I look at pictures of him now, from his birth day on, knowing that it was there all the time, stupidly growing, dividing it's greedy cells inside his little brain. This stupid bunch of cells that have no purpose whatsoever except to divide and grow and divide and grow without ever stopping until they kill the very tissue that is giving them life. It makes me sick. Sick with grief and loss and angry that such a thing as cancer exists. But all that only brings me back to the "why " questions that cannot be answered. No reason for it at all. Not that we will ever know in this lifetime.
The next MRI is Nov. 30 and until then, we are just waiting, taking care of him as best we can, and just waiting to see what the pictures will show. Trying to make the best of the time we have with our precious baby.
I am still ever thankful and continue to be touched by the amount of love and support we receive from our friends and family. My mom visited this weekend and it was really nice to have her here. She is really good with Theo and he likes to hear her talk to him. Jamie's sister is coming to visit this week and we constantly have friends who come to visit us as well as my Dad and Jennifer who live really close by and come visit every week. People all over the country and the world continue to pray for us and send us positive energy. Which is welcome and good, because I have lost the ability or inclination to pray for anything. All I can do is offer up my love for Theo and all of my actions in caring for him as my prayers. That is all I can do and all that really matters. Any prayer that I might utter now would be only empty words with no meaning or feeling. But knowing that about my own heart doesn't mean that I don't know that the prayers and love and energies of other people on our behalf are meaningful and do touch us and help us in so many ways.
Because I can't do it is even more reason to ask for that gift from all of you.
Love to you all,