That’s what my life, our lives, feel like at the moment. Our Christmas cards are done, we baked Christmas cookies all weekend, celebrated with my family and had a mini Christmas celebration with Kevin’s. We made to mass one final time. Last night around 11 I asked Ava to turn off the light and go to bed. She told me she didn’t want to because it just meant less time at home. Today when I was sitting with my mom she told she only had two days left till AJ goes to Hopkins. This evening Ava asked if people would still care about her once she had CAR-T. I told her I would and that seemed to the right answer.
Yesterday’s homily was about having hope even when things are at their worst. How the Bible tells about hope in the desert, hope when imprisoned. My Jesus Calling readings have been all about having hope and letting faith guide your way. As a family, as parents, and as a patient we could not be more hopeful that CAR-T will be our Christmas miracle.
But I would be lying if I didn’t acknowledge the little fear I have in my belly. The little voice saying don’t be naive, nothing is guaranteed. How many parents have taken their kids with the same hope we have and left with unimaginable heartbreak and devastation. What makes me think we will be different? We are no more deserving than any other family. Each child fighting this horrible beast of cancer deserves a cure, not just mine.
So what I’ve decided to do when the little fears begins to grow is enjoy the moment and pray for my Ava, for her doctors, and for great faith in God’s plan. Then I look over and remind myself that right now Ava is doing well. She’s strong. She’s getting over a cold, but besides that she’s feeling good. She got a little limp, but she’s still zooming around on the Segway and having fun with her siblings. She’s got such a low burden of disease, God is clearly healing her. And if nothing else, at this moment she’s with me, loving me, sharing this life with me.
I have hope that this treatment will bring healing to my girl and the I also have the knowledge that she has no quit in her and powerful God on her side.