I remember back in the days of when Charlie was in the NICU I cried a lot. It was incredibly hard to be away from him. My husband kept trying to calm me down but I just kept trying to explain that it's a biological need to be near your newborn and it is physically painful to be away from them. I cried so hard that my eyes were constantly red and my head always hurt.
When he was transferred to children's and I could be with him day and night I thought maybe I could cry less. Then when I realized that they seriously thought he had cancer it wasn't just something on a list of stuff they wanted to rule out the floodgates opened and they haven't stopped since.
I manage to keep it together a lot of the time carry on normal conversations, go to the grocery store all that stuff. But the most random things set me off and it's hard to get it back under control again. Little things to songs on the radio that aren't even sad or just changing a diaper and just not knowing how many more diapers there are to change. Looking at his chubby tummy and his sweet little face it's hard not to cry. I'm going to feel like a real ass if he comes out of all this okay and all he knows of me is a mommy that cries all the damn time.
My 2 year old has taken to patting me on the arm a lot telling me that "it's going to be okay mommy". I sometimes like to think that maybe he knows something I don't know and maybe it really is going to be okay. I mean there are so few answers so far whose to say that the 2 year old doesn't hold them all?
From watching tv I've always thought you quickly get diagnosed with cancer, you start getting treated right away and that's that. I never realized that sometimes you just languish with no answers. I never realized there is a wait and see approach to cancer and you just hang out with it hanging over your head like a dark cloud never knowing whats going to happen. Not having answers is both a blessing and a curse. Not having answers means I don't necessarily have bad news. Not having answers also means I don't necessarily have good news.
I don't really know how to function while all this is going on. I don't know what is normal or what is okay. Is it okay to go out to dinner with your family for your birthday? Go out to dinner and enjoy yourself? Is it okay to take your 12 year old to see twilight and actually think it wasn't the worst movie ever? I mean my baby has cancer life is not normal but I don't know how to act or respond. We are just sitting around in limbo and I don't know if it's okay to RSVP yes to a Christmas party invitation. Because should you be going to a Christmas party when your baby is at home with cancer?
I sometimes wonder if all this would be easier to take if it wasn't cancer hanging over our heads. Cancer is what adults gets. Cancer is what children get but older children. Babies are not supposed to be born with cancer. That's not something that is supposed to happen. Cancer is not one of the things they screen for, cancer is not one of the things that they test for, cancer is not one of the things that they tell you your baby is at risk for. Folic acid doesn't help prevent your baby from being born with cancer because it's not supposed to happen. Charlie was the youngest baby on the cancer ward and the youngest baby that they could remember being there in a long time. They also hadn't done a bone marrow biopsy on a baby so young in a very long time. Because these things don't happen to 9 day old babies. 9 day old babies don't need bone marrow biopsies to confirm that they were born with cancer. That just doesn't happen. Lot's of things go wrong with babies, they are born with a lot of things wrong with them and I just can't help but wonder if it would be easier to swallow if it was something that we could expect or have lurking in the back of our minds as a worry. But no, it's cancer and cancer is the scariest fucking word ever especially when you are applying it to a newborn baby.
People keep telling me they are in awe of me because I have been so strong and I never know how to respond to that. Because honestly I don't feel strong. I carry around a handkerchief with me to blow my nose because I cry so damn much. Sometimes I just lay there and cry all night and don't even bother sleeping. I cry in the shower, I cry in the van, I cry so much that I wonder how I could possibly still have tears to shed. There should be some sort of lifetime limit so that at some point I can function like a normal person again and my 2 year old can stop reassuring me. I really do hope that one day I look back on this and realize how silly I was for crying all the time because I should have just listened to the 2 year old because everything was actually okay in the end.
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