This is one of those thinking too much at night posts...but every night when I rock Brinley before bed I sing to her, and think...and think....and sometimes cry....and think. Here are some of the things in my head.

Now that the diagnosis has sunk in, it feels so normal for me to say "My daughter has leukemia". I can talk about it like it's nothing to a perfect stranger. I don't usually choke up talking to people, and most of the day I feel like I am plugging along just fine. We are handling this, and that feels good (of course we are in a good part of treatment). Then there are times when I look at her and realize what she looks like to the rest of the world. I forget when we go to the store, or church that people are looking at her, and she looks like a cancer patient. Her legs are skinny, her hair is just growing back in. This feels like it isn't really my life. Like when I see a family with a sick or handicapped child, and give them a sympathetic smile and wonder what life is like for them. We have become that family overnight. So totally unexpectedly we were knocked out of our normal world and dropped into this different world without warning. Sometimes I think my head is still spinning from that change. But the reality is we are adjusted and this sometimes feels normal.

Sometimes. Then there are times that I want to scream. So many people have said "she will make it through this", myself included. If I really start thinking about it, I am terrified. Brinley still has a 90% survival rate. That is high. Kind of. When I think of 10 kids standing in a room, and mine is one of them, all with the exact same odds, and I know that one of those kids is not going to survive, that is terrifying. One in ten! If the odds of winning the lottery was 1 in 10, how many more people would be buying lottery tickets? I know I would. The scary thing is we have years before we are out of the woods. There is a girl that is very much like Brinley, diagnosed with the same thing at almost 2 years old, went through the same treatment for 2 1/2 years, 3 years AFTER she was off treatment, she relapsed. Three years later! She then had to go through much harsher chemo and they almost lost her several times. She is off treatment again now, and they have to just pray it doesn't come back. That could be us. What if she is the one in ten who doesn't make it? Who would let their kid go to school if there was on 1 in 10 chance of them getting shot? For a school of 500 kids, 50 would be shot and killed. The school would be empty. I don't mean to sound ungrateful for those odds, because certainly when it comes to cancer, those are good odds. But I want better odds when it comes to my daughter. That's not good enough. Brinley had a .01% chance of getting leukemia, and here she is, with leukemia. So please don't tell me you KNOW she will make it through this, because one of those 10 kids isn't going to, and who's to say it won't be mine. Someone has to lose a child somewhere, or we wouldn't have the 10% death rate. None of us know the outcome of this, and I have been known to say it will be good, but the truth is we don't know what is in store for Brinley. That is the reality that I try to escape every day, until I am rocking her and it is quiet, and I have my thoughts to myself and my baby there in my arms. What is her outcome?

4 comments:

Anonymous said...

Kristin,

All i can say is I wished i could take some of your pain away even for a little while. You, Brinley, and your family will be inmy prayers.

JohnH said...

I think about Brinley and all of you every day...several times...and of course pray for you. I know noone knows the outcome for sure. We all hope and pray for the best. But the one thing we DO know is that God knows, and He will be right in whatever He decides. You will keep moving along with all the pain and suffering and joy and happiness and accept the outcome as His will. When it is all over, we will all rejoice together as a family forever. I love you, Kristin, David, Brinley, Jade, Taylor, and little Tallahasee. I can't wait to see you again. :)

WendyK (all-kids list) said...

We are right there with you, and all I can say is that we will pray that Brinley will be one of the 9. Hugs for your family. There are no words to take that fear away no matter how hard people try.

www.caringbridge.org/visit/kadenkilburn

Phil801 said...

Kristin,

This post brought up lots of emotions and memories. It's so scary what our kids are going through and sometimes it is completely overwhelming. It doesn't get easier it just gets less frequent. I know EXACTLY how you feel and just want you to know that in our Cancer world it's completely normal! :)

Love how you described the flip of realizing that YOU are now the handicapped family people are feeling sorry for, it's weird :)

As you've already found, you'll have great up days and really ****y down days - the only good thing is that the down days teach you to be really grateful for the up days.