Hope? What’s That?

One year ago today was Ariella’s last day of school. Ever. Of course we didn’t know this at the time. When she hugged her friends goodbye we never could have fathomed that it would be the last time some of them would see or talk each other. They made her cards and gave her gifts wishing her well with the bone marrow transplant. They said they would miss her and couldn’t wait for her to be back in school with them. We knew she wouldn’t be going back for that school year. But we never in a million years thought that she would never get the chance to go back. That she wouldn’t finish middle school, go to college, get married, have a family. A cancer diagnosis forces you to face your child’s mortality but that is then pushed aside by hope, and optimism. The thoughts that Ariella may not survive were there or course but I never fully believed that she wouldn’t make it through. You can’t think like that as a cancer parent. Our child is going to be the one to survive. With every bad scan or relapse the possible mortality slaps you in the face again. But then life gets in the way again. In between the treatments and bad times were plenty of good times, fun times. Thoughts that your child may die are not at the forefront, though they do hang out in the background rearing their ugly heads at random, or not so random times. But we were able to go on living and enjoying life, even after Ariella relapsed. We were worried and scared but always thought we would get through it. That she would get through it. We never got to the point where we lost hope, because we still had options for treatment. And then she was eligible for the transplant. The hope carried us through. Because how can you live that kind of life without it?

I am now living a life without hope. I have no hope that life will work out in my favor anymore. I have no hope that I will be okay. I have no hope of ever being happy again. Because what I want most, Ariella, to be a mother to Ariella, has been stolen from me. I can’t live another 40 or more years without my daughter and be okay. Or be happy. Living a life in pain, in constant sadness, in yearning, in missing the one you love the most, is no kind of life at all. It is dark and frightening, overwhelming and daunting. I don’t want this life, one as a childless mother.

Every day I walk through the halls of schools. I see students getting books from their lockers, sitting at their desks, socializing with their friends. I work directly with children, some close to her in age. And I picture Ariella in school. In her uniform, getting in trouble with the teacher for talking, gathering at the lockers with her friends. And it shatters me again and again. Not to where I want a different job, because I don’t. I like my job and I like my students and I enjoy working with them. But at the same time it is often incredibly difficult. I wish I didn’t have to work at all. Some bereaved parents find they need something to keep their days filled, but I just find it exhausting. So fatiguing to pretend to be okay when I’m not. I can’t find the words to describe, but it still doesn’t feel right to me to do anything seemingly normal when my life is upside down. I still can’t see the point in any of it. Nothing matters. I was never much of a talker but I talk even less now. I don’t like small talk, I don’t want to make conversation. Because most small talk is pointless and a lot of conversation is outright painful. It is all just so futile and I just want it to be over. I’ve read in some articles that suicide rates are high among bereaved parents. And I get it. This life just sucks.

February

It’s here. It’s well underway. February. The month that started it all. It actually started a year prior, in February 2016, with the death of my father. He died on the 25th and was buried on the 29th. I hate that it was such an unusual day. I’ll never be able to look at leap day as anything other than the day I buried my father. February 2017. Diagnosis day. Biopsies. Scans and tests and procedures. Appointment after appointment. Waiting. More waiting. We knew we were dealing with cancer but it took weeks to confirm the actual beast we were facing. Waiting to start treatment, worrying that the cancer cells were rapidly multiplying, taking over while we had to wait to find out what type of cancer, which would determine the treatment. Central line placement, pneumothorax, chest tube. All of this before treatment started, which finally began in March. Did that delay allow those microscopic cells to start taking off through her blood stream, unable to be detected by chemo? Or was it our delay? Brushing off her pain as an injury that would get better with rest? Or was she doomed to succumb no matter when we caught the cancer? February 2018. Fraught with anxiety. Recently off treatment, in between scans. Everything still so fresh in our minds, worrying about relapse. We got lots of congratulations at that time, but I just couldn’t fully celebrate. Because I wasn’t convinced the cancer wouldn’t return. February 2019. Started out so hopeful. Radiation did the job it was supposed to do. Ariella was cleared for bone marrow transplant. More tests and scans. More appointments. And some optimism and hope mixed in. February 11, spent all day at Hopkins for blood work and baseline tests and such. February 18, admitted for what we thought would be 4-6 weeks. Starting the pre-transplant radiation and chemo. Actually managed to have some fun in the hospital. We (thought) we knew what we were in for so were making the best of the situation. February 26, the day we were all waiting for. The day we hoped would cure her for good. The day that set her death in motion. Bone marrow transplant day. What people often call a “re-birthday”. I would give anything, anything to roll back the clock to that day and change things. Not do the transplant. Or do it a week earlier, or a week later. Anything that could possibly change the outcome. Ariella didn’t end up in the ICU until March but February started it all. And it kills me to think about what could have been, had it all gone well like we expected. Why? Why did this happen?