It Keeps Happening

Two posts in one day. Well I actually wrote the stones post yesterday, just didn’t post until today. I write because I just don’t know what else to do. I don’t want to go anywhere, I don’t want to do anything, I can’t concentrate on books, so I have to do something. I have so much I want to say, need to say but I can’t actually say it. So I write it. I know that so much of what I write is repetitive but that’s because nothing has changed. I’m still in this dark, dark place with no signs of emerging from this black hole of despair. I’m still at a loss as to how to go on living, functioning in this world without the person that completed me, completed us, completed our family.

It took a long time to come to terms with the fact that Ariella had cancer. It was surreal, it never felt like that was our real life. It was like living in an alternate reality. Even when she relapsed it was so hard to believe that we had a child with cancer. It was simply unfathomable. We did everything we needed to do but it was impossible to believe that was our life. Things like that didn’t happen to us. We were so fortunate and happy. We had a fiercely independent, sassy, smart, kind, and beautiful young girl who was rarely ever sick. Cancer and illness happened to other families. Not ours. Of course we thought she would beat it. You always think your kid is the one that’s going to beat the odds, the one that’s going to make it. Sure cancer is horrible but we would get through it and all would be fine again. So imagine how hard it was to come to terms with the fact that she died. I still find myself hoping that this is just a horrible, horrible nightmare and that I will soon wake up. How can this be real? How can this be our life now? What’s really sad to me is that I have gotten used to not having Ariella around. Actually, that’s not true. I’m still not used to the quiet. I miss her noise, miss the evidence that she is there, miss the activity, miss her running through the house and her larger than life spirit. I’m not used to that at all. But I no longer expect her to walk in the room any minute. I no longer pick up my phone to send her a text or show her a cute or funny picture or video I saw on Instagram. I no longer pull out 3 plates when serving dinner. I do still talk to her about my day but I no longer expect to hear her answer. And that makes it all the more real that she is never coming back. That we have to live the rest of our lives without her. That this is our new, shitty, reality.

Early this morning another little girl we know died. Different cancer but similar story to Ariella (though this girl had been fighting cancer for much longer than Ariella). They were in the hospital together with bone marrow transplants just a few days apart. This girl, like Ariella, had complication after complication, setback after setback. Tiny baby steps forward and huge steps backward. Earlier on in their hospital stays her mom and I would talk about the day they would both be out of there, how they would celebrate, and the stories they would share. How even though they had at that time only seen each other in passing we knew they would have an incredible bond with everything they both had been through. Be careful what you wish for, right? They both made it out of the hospital, not in the way any of us wanted. They are both together (I hope, still not sure what I believe) but again, not in the way any of us wanted. It hurts that much more that neither of the girls survived. My faith was shattered when Ariella died. But I did retain some hope that this little girl would make it. I checked Facebook daily for updates. Clung to that glimmer of optimism when she seemed to be making some improvements. Felt every bit of devastation with each setback. One of them should have made it. They both should have made it. My heart breaks even more each time I learn of another child dying, whether I know them personally or not. I don’t understand this world. I can’t make sense of it. There is no sense to be made. None of this is okay. None of this will ever be okay. I don’t understand why kids keep dying. This shouldn’t be happening and my heart cannot take it. But I continue to follow the kids’ stories. I continue to check on them daily. Because the stories need to be shared. The children need a voice. The parents need support. As long as people continue to look away kids will continue to die from cancer. It’s hard to see. It’s impossible to watch. Stories are often not shared. There is not enough awareness. I was blissfully ignorant until my child was diagnosed with cancer. Never thought it could happen to us. I will not allow that ignorance to continue. Our children are worth more than that. And one day it just may be your child. As much as it hurts I will not turn my back on kids fighting cancer or their families. They are my tribe. And if the unthinkable happens I will be there also with my arms wide open.

The difference between this girl’s mom and me is her mom’s seemingly unwavering faith (though I do not know if her faith has been impacted by her profound loss). I am jealous of people who continue to have faith even in the darkest of times. Faith gives them something to grasp, serves as a comfort, knowing for sure they will one day be reunited with their child. This does not take away the immense pain they have without their child beside them here on Earth but I guess gives some reason or purpose, some meaning, some hope, knowing they will one day see their child again. I wish I could have that kind of faith. Make some sense out of the senseless. But I just don’t. I just don’t have faith that a greater being or higher power would allow innocent children to suffer and die. So here I am, still trying to figure out some meaning or purpose to this new life I am living.