Yesterday afternoon I went back to Sinai Hospital to deliver more bears for Ari’s Bears. This time was so much harder than the first time I went back. This time I couldn’t tell her story to the parents without breaking down. This time I had Ariella’s friends with me, mostly school friends, and her absence was obvious. There was no one playing basketball or challenging me to Foosball. It was so quiet in there for having seven preteen girls and one preteen boy. That room was never quiet when Ariella was in there.
I love Ariella’s friends. They welcomed her into a new school with open arms and treated her like a normal kid. They were supportive of her and it was evident how much they liked her. She was the new kid and yet never felt like one. I am forever grateful to her friends for being so kind and loving and welcoming. She truly loved her school and went even when she wasn’t feeling her best. I am also so pleased that her friends are also passionate about Ari’s Bears. They too want to continue her legacy.
But being with her friends at the hospital was so very hard (any of her friends reading this, you guys were incredible and you will always be part of our lives and part of Ari’s Bears, it’s just hard for me to do it without her). Watching them interact, hearing their conversation, and just knowing a member of their crew was missing. Ariella loved being with her friends. She thrived on the interaction. I miss all of it so much. I miss hearing about her friends, having her friends sleepover, watching her become more independent, watching her come into her own. I have a lifetime of seeing girls her age grow up, surpass her, do all the things she will never get to do and that I will no longer get to do with her. As parents we take such joy in our kids. We take pleasure in watching them grow, making their way in the world. We live through them. Our jobs are to raise them into successful, independent adults. Watching the other kids do it just isn’t good enough. Watching other kids do it is so fucking hard. I want her back. I want my baby back. I don’t want to navigate this world without her. I need her to nurture, to love, to take care of.
This morning I was at an appointment with someone at a radiation oncology office. Figured it would be fine, I was just hanging in the waiting room. But while waiting I heard two patients ring the end of treatment bell. The sounds of celebration filled the waiting room. Ariella rang the end of treatment bell twice. First after she finished her first line treatment and second after she finished radiation as part of her relapse treatment. I was so happy when she finished that radiation treatment. For one thing, she was feeling pretty lousy from the radiation so I was hopeful that she would start feeling better soon. But mostly was thrilled to be finished with that phase of treatment and hopefully move onto the next, the bone marrow transplant. Radiation worked. Her tumors were dead. Nothing lit up on the PET scan. It was time to kill those cancer cells for good with new bone marrow. So much hope. Hearing the bells brought me back to those two times when we had hope, a positive outlook. We thought things would be okay. Only to have our hearts ripped out of our chests with nothing left to live for.
I don’t want to do this anymore. I don’t want to cry everyday, I don’t want to live with a gaping hole in my chest, I don’t want to watch or hear about the other kids getting to do all the things Ariella will not. I can’t go anywhere without the threat of a trigger. There is always a reminder, something that makes me think of her. In reality I am always thinking about Ariella. I am always aware of her absence. But some things just slap me in the face. Make it painfully obvious that she’s not there. Makes me miss her even more if that’s possible.
I think my friendships are ultimately going to suffer. Especially friendships made because of Ariella. Not because of them, but because of me. It’s too painful and I fear I may have to distance myself. But then I won’t have anyone outside of family. I don’t know how to do this life. This life is unrecognizable. I am unrecognizable. I am not sure how to go on from here.