All of this "strength" I must have for her is wearing thin at times. I feel the joy being sucked out of my life when I see her flinch. I struggle to hold in my fear and keep my anger at our situation from exploding and projecting onto others. I don't have time to care for myself like I like to. Recently Ive felt so unhealthy- mentally & physically as Ania's health has taken priority. No one ever really tells you what it's like to suffer through the forced strength you must carry during your child's cancer. There is no other choice. We "warrior parents" may appear strong, capable and resilient but sometimes we crack and lose sight of who we are. But that forced strength is powerful- and it pulls us along. I really believe faith is what makes up this strength.
With a cancer diagnosis and chemotherapy treatment, I naively expected Doctors and nurses to just take care of everything and for me to just be there to comfort her. It's not that simple.
I have to give her medications. Lots of them to keep her immunity up. Ania hates taking medicine. If fact she sometimes vomits when I try to give her all the prescribed medications she has to take now that she is on chemotherapy. Sometimes she cries for me to leave her alone and says I am hurting her. Hearing that, just tortures my soul. I know she is not really in pain but I feel horrible. I watched as she screamed for the nurses to leave her alone while try to find her port hookup unsuccefully 3 nights ago in the ER for her elevated fever. There is still no explanation for the fever she is experiencing. Blood labs appear normal. Sometimes the fever disappears for a few hours and then just comes back with a vengeance up to 103 degrees. Her personality changes and she is not happy at all. My poor girl is robbed of her sparkle and joy. And so am I.
Just when I feel like I want to bury myself in my bed and hibernate, her fever will break and she will smile again. Today after 2 challenging doctor appointments, she was smiling again. It was 5pm and she has a ballet class on Tuesdays at 5:30pm that she goes to when we can. She brought up her dance class and said she wanted to go. She was so excited and I knew it was a fleeting moment so we quickly put on her leotard and got to class a few minutes late. She hasn't been to class in weeks. It was not evident! She jumped right in and didn't miss a step! As we walked to the car after class, she said to me "Mommy, I love you"
That's just what I needed. Thank you Ania for that little gift of words.
However, as soon as we got home, her demeanor changed. Her fever jumped back to 102 and medicine time approached. I was back to enemy #1 as i tried to coax her to take her medicine and take a bath. Sigh...
You know the saying "One Day at a Time"..... Well, my life is "One Moment at a Time." I'll take the good and revel in it while it's around. That will hopefully keep me charged up with enough positive energy and faith to get through the bad.