It’s a lovely fall morning here. Grass covered with dew that glistens in the sunshine through the trees. It’s picture day at school for Adler today. So not only did he get to wear a new Picachu shirt, he got to go to school early today since he normally goes half days since he’s still tired from chemo. 14 months later we are done with chemo. For now. Most likely in about 4-6 scans (so about a year or so) he will have to go through it again is what his doctor predicts. He said “I hope I never ever have to have chemo again. It makes me tired when I don’t want to be and I hate puking” He has a depth of an adult poet lariat with the imagination and day dream ability like the great Lewis Carroll. What’s hard for me as his mother is to not go down that rabbit hole.
We climbed into the ol’ mini van and headed to school. Music on and singing along when a familiar song came on and he relates that song to his MRI’s. It’s lyrics are “wake me up when it’s all over”. Makes total sense! Then I asked not thinking he would have such a deep answer for me “what’s your cancer song Adler” He responds with “you know that one song that goes the heart wants what it wants?” I say “Yes, let me pull it up on my phone” So I Google it and pull it up and play it. Driving along the same road we always we listened to the song. It is about a break up and how she’s shattered and cold and hurt and she hopes she will survive that break up. I question Adler “why did you pick this song as your cancer song?” His answer stunned me into tears and now anger. “Well, because cancer broke my heart. And it’s sad and it hurts and I want to survive like she sings about”. And there it is. He gets it. We have not sugar coated anything through this. He knew in the beginning it would be a fight for his life and he understood that and obviously still does. The doctors always speak in front of him and even seated in his tiny rocker in the hospital room engrossed in this iPad games, he hears everything we say and it sinks way in there. He reminds me of that all too often. He may be 5 but his mind, body and spirit are all grown up. He has adapted to his surroundings and evolved to survive. His methods are quite true and necessary in his world, our world of living with disease. I can’t believe I just said “living with disease” after my son, my fucking 5 year old son related a break up song to his own mortality.
I wiped my tears and took him into the school. We talked about our favorite words we like to say. He likes “kazoo” and I like “trouser”. They are fun to say! So naturally I avoided and shoved down my anger and fear and sadness to make him comfortable on the way in to class. He went off to get his picture taken in the library and I hung his back pack, that lights up and has a Captain America and an Olaf and a hand sanitizer dangling from it and his lunch bag too on his hook with his name above it. I chatted with the teacher and again acted like I was fine. But inside I was crying, weeping, begging for my son to be OK! Why, why him? God why? Cancer broke his little heart and that hurts. It hurts to know that’s how he feels. But yet he shines so brightly and is so happy and joyful and playful and just craves normal. He likes being different but he hates being sick. We as his parents have tried to just let him be himself and love every bit of him and love every second we have with him for as long as we have him. May it be until we pass on ourselves and he out lives us both with the reality of his own life and family and friends in the future. Not fucking cancer and chemo and possible radiation and all that comes with it. We try not to think of the what if’s or the maybe’s or the possible things we are trying to stay so present and so in the now but sometimes it is just easier to be numb.
He’s had some really fantastic experiences in the last couple weeks. He walked onto the field during a Notre Dame game at the stadium with the NCAA Fencing Team that he is a part of as they were honored and I tried so hard to be there, in that moment and cheer and be excited!! And He had a party at Super Target just for him with signs up and employees clapping for his last chemo because all my little boy wanted was a trip to Super Target for a pretzel from the snack bar and a toy!! So the manager set up a party for him. It was outstanding. He was part of the ground breaking for the new Memorial Children’s Hospital and he danced in front of tons of people again and was a part of the construction crew. It was a big deal!!! We also had a benefit for him where 535 people came and showed their love and support for us and our son, who is purely contagious once you get to know him. And again, I was there, alive and in that moment but my has this journey caused me to fold into a place that is very uniform and routine, comfortably numb and safe almost. Where my true emotions are stifled and on hold and my face smiles and I feel good about it all and happiness is genuine, its hard to explain. It’s like you go through the paces while it all happens and then you can recall them later as a wonderful exciting moments and you know you were there and you could feel something but it’s not like it was real. It’s like watching a movie in your mind sometimes. All those glorious moments are so fantastic and full of love and light but lurking in the shadows is cancer. Always. And that just sucks.
I have fallen into a pattern of chemo days and after care for those days and the monitoring of his meds and pain and always watching him, always worrying and focused on him. Just him, always Adler. I am a mother and a caregiver. He has physical limitations that require my help though he has gotten so much stronger physically over the last year and his heart has too. But just to hear him say what he said today brought out those feelings, those emotions that I force down inside and they came out. And I let them. Home alone I sit with the box of Kleenex sobbing. And let myself feel angry and cursed as I picked up the house while he’s at school with his friends. Normalcy, let it just happen. Why can’t I just let it happen? But it’s scary and unknown. God Bless my therapist. I may be upping my times with her.
We have won the battle but not the war and it certainly still rages inside me. May it be calmed by letting it out and by the sunshine and the love and support from those that listen and understand and by trying to feel again. Until then this cancer mom will remain uncomfortably numb and continue the day dreams of comfort and routine methods of healthy distractions.