Ever since we came home from her CAR-T infusion Ava has been sleeping in her own room. Sometimes she moves to the couch in our sitting room, but most mornings Kevin will tap her to move to our bed once he leaves. On the rare occasion that he forgets she asks me to remind him for the following morning. It’s moments like this that remind me she’s still a kid and she still needs me, even if it’s just for little things.
Throughout this journey she has been so brave, so composed, and so mature. There have been only a handful of moments she’s shown fear or doubt. This post isn’t to brag about how she’s handled all of this, but more to express my wonder of how she’s done it.
This is not to say that there haven’t been tears, she’s human so of course there have. I’ll never forget all the fear she’s had over doing LPs with out sedation. The pain she was in while those happen and the time she fell asleep crying from the pain after one. Or the day we told her she wouldn’t be home for Christmas. I don’t think I’ve ever seen her cry so hard or so much. Maybe it’s just me, but I don’t consider crying a weakness. To me it’s a coping mechanism that allows you to keep going.
My wonder is more about the lack of fear in what leukemia could mean in her life. As much as I’ve tried to keep my worry in check it still happens. Throughout this process I’ve really worked on turning my worries into prayers. My go to is praying a Hail Mary or giving thanks for an answered prayer whenever my mind wanders. Sometimes it works sometimes it doesn’t. Sometimes the anxiety gets so bad I have to talk to someone. My first person is Kevin. Though he always makes room for my fears and validates then he also always reminds me worrying won’t change the outcome and quickly moves on. This leaves me to reach out my mom, a friend, or a fellow cancer mom to talk through it all with. I don’t know how I’d do it without these amazing people to walk me back. That’s where my wonder of Ava comes in. She never needs to talk to through the worry of the future, the what if’s, the tailspins.
We’ve been on this journey for six months now and the question I seem to always ask myself is how? How does she do it? How did this 14 year old who was dealt such a crappy hand learn to be so confident? How does she deal with the fear of a procedure without needing to lean on anyone?
Last week when Dr. Molina called to give us the results of her CD19 blood smear I was upstairs with Ellie and she was watching a movie with Kevin downstairs. I ran to the stairs and said “Dr. Molina called, Ava’s got no B-cells!” Later that night she mentioned in that second between Dr. Molina called and Ava’s got no B-cells and panicked and worried something was wrong. That my friends is the only crack I’ve ever seen in her armor. Besides that she’s always told me and been confident that she’s going to beat leukemia. If she has doubts she keeps them all to herself.
On one night in early January she asked me to lay with her until she fell asleep. I told her I would pray the rosary while I waited. Shortly after I finished she asked me, Mom do you think I’ll have a husband? I told her I didn’t know. She’s always been so independent and spoken of not wanting one so I didn’t want make her feel she needed one. Her question made me realize that she’s planning her future. Another evening she was crying because she was getting a c in geometry and was sure she wouldn’t get into medical school with a c in math. I had to laugh. Really? All that you’re going through and your biggest worry is a c in math?
Yesterday we went to Harris Teeter for some dinner supplies and she saw someone she knew from school. As we were walking out she said “Great, she saw me.” I asked who and why it mattered. She told me that the girl was not a nice girl and it’s because of girls like her that she won’t return to school this year. Several times she’s told Kev and me that she won’t go back until her hair is fully grown in because she doesn’t want to be made fun of. She doesn’t want to be bullied by other kids. This blows me. How is that she’s been through all this difficult stuff, endured so much pain, but is scared of what other kids may think?
There’s so much I don’t understand about my girl. Perhaps, she will always be a mystery to me. What I do know is that she was perfectly made for this life. For that I can’t thank God enough.