Thanksgiving has come and gone. Charlie was able to spend his first Thanksgiving with his family and it was wonderful. I'm trying hard not to be so bitter and angry and trying to muster up a few things that I am thankful for. It's hard because the reality is I am pretty bitter and angry but I'll work through it.
I am thankful for the friends and family and even strangers who have supported us through our journey. Thankful for the family and friends who have helped us with the kids, especially Henry during this time. I feel awful how little attention I've been able to give the other kids but having a support system of people who could help has been wonderful. Thankful for the friends who helped in small ways like bringing food to the hospital or just sitting there hanging out with me. Especially my lovely friend Elie who would just come and let me talk about things that were not Charlie and not cancer. Having a friend who will answer off the wall questions about growing up in a communist country is totally priceless.
I am thankful that we live in a large city with an incredible Children's Hospital and an incredible team of doctor's. I am thankful that when Charlie developed a cold right before his shunt surgery the PICU nurses and doctor's worked hard to save him and then keep him alive. I cannot believe in this day and age of medical technology we still do not have a handle on the common cold and that my baby with cancer almost lost his life due to a cold. I am thankful that he did not and he is here with us. Watching your baby almost die from a cold is just such an awful helpless feeling. There is no medicine, no treatment nothing you can do to fix it. So I am thankful to the PICU nurses who were so kind to us and took excellent care of Charlie. They reminded us a few times that we weren't required to stay with him at all times and we didn't have to stay the night but honestly I was incapable of letting him be alone. So I am thankful that they also did not push us to leave even though we were some of the only parents staying with their kids in the PICU.
I am thankful to my small Internet group of friends who were there the entire time. There for me no matter how crazy it got no matter how crazy I sounded they were always there with encouragement and kind words. Thankful that there is an Internet to help keep me sane while we go through this. From google to facebook to online support groups to crazy youtube videos the Internet really helps save your sanity.
I am thankful for the people who keep telling me that they are in awe of me and that I am an inspiration. Because I don't feel like one I feel like a hot mess and like I don't know what I'm doing and that I am just failing. It's nice to have a reminder that maybe I'm not doing as bad as I think that I am. I keep hearing from people that they would never be able to handle it or stay strong. They would just cry all the time and be crazy. I will say crying all the time is really tempting but it's honestly not always an option. Sometimes you just have to power through it. I will say that you really don't know how you will act in these situations. I've surprised myself a few times because if you had asked me 5 months ago how I would handle some of this stuff my answer would not reflect the reality of how I have handled this.
I am thankful that I can be a big contradictory mess and never make sense and no one seems to be bothered by it. Or if they are they keep it to themselves. I feel like I am on the world's worst roller coaster ride which sucks because I hate roller coasters. I hate rides. When I was a kid my mom forced me onto a few roller coasters convinced that if I just went on them I'd like them. No. Still don't, hated every minute of every ride.
Finally I am thankful for Charlie. Sometimes I think about how much the notion of him being put here for just a brief period really sucks. It's stupid. Giving people their babies for a brief period is stupid and dumb and sucks. But I am thankful that I get this time no matter how it ends. I am hopeful that Charlie will be with us for many, many years and thankful for whatever time I do get. But I'm putting it out there it really sucks if I don't get that much time. It sucks and it's unfair and I will seriously stomp my feet. I am an ugly cryer and no one wants to be subjected to that. It's just unfair all around.
So happy post thanksgiving everyone, may your leftovers keep you full for a week.
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