It matters not the pain of the last 2 days that were burdened with a crippling migraine. It matters not the past 2 years heavy with pain and suffering for our son with disease and illness and treatment. What matters is this very moment when he says “will you lay with me for a minute?” and I do.
He rolls over into the sea of stuffed animals all carefully selected and named and introduced to one another one night. One anxiety filled night after a conversation about wanting his old bed back after he’d wanted a new one that Grandma went and purchased along with his own choosing. So we added more guys to make him more comfortable in his new bed. Some old and some new guys. Some from the hospital in Chicago and some gifts from friends or from mommy’s trips to Super Target and Whole Foods on Sunday’s to get groceries and take time to think and drown out the woes of the everyday by being a consumer for a couple hours instead of a mom and caregiver. There have been many late night talks about things that no mother should have to talk to her child about. His fears of death and of this cancer causing his death, is one that we have had more than once and I hate that. How dare life do this to him, to us? But it has. And no matter the pain, whether it’s frequent or infrequent, we still have to talk about it. And often those talks end in tears and me holding him for comfort. He crawls on my lap, his body against mind and I wrap him up in me and try to take the sadness from him. I much rather prefer the ones where he’s happy to see me and runs to me and jumps on me forcing me to collapse to the ground and we fall in laughter and kisses. Who has to worry about their son having PTSD after his cancer treatment because his cancer is inoperable and he knows what that means……I do. And our own minds have gone dark and cold sometimes requiring talks that a husband and wife shouldn’t need to have but we do as the parents of a sick child it’s all part of it. But you hold on, you have to and the light flickers again and with deep cleansing breaths, you settle your racing thoughts and hope your body can catch up one day.
I curl up beside him and he laughs and giggles and we talk about school on Monday and hot lunch and a classmate that’s in Florida now and how much fun we had when we went on his Make A Wish trip and he rolls over and says “I am going to sleep with you” and he holds me like I am one of the stuffed animals. His arm draped over me and pats me a few times. I put mine around him too and I say “this is what matters, right here, right now, this is what it’s all about”, and he smiles. I breathe him in. His hair smells of outside and Aveda shampoo and frankincense lingers in the air still from me applying it to his feet for a natural anit-depressant and calming agent and in hopes that like the many many articles I have read on self help and healing that somehow it’s true and it will soak in and shrink the tumors that still live in his brain and spine. Hell, at least it smells good and he loves the scent. It makes me think of the high masses at church from when I was a child and how they burned it in the sanctuary. The sounds of the Led Zeppelin lullaby CD ping and ting as the soundtrack of his sleep and the lava light has begun to bubble and make patterns on his walls. And the newest addition is a Himalayan salt lamp in the shape of a bear on his night stand lit by a red Christmas light. It’s supposed to help clean the air naturally and help all sorts of ailments from pain to stomach aches. Again, it can’t hurt anything.
I have held him like this many times in his life. From the moment I could hold my growing belly with my two hands to when he was placed on my chest but I was too drugged and too sleepy form 30+ hours of labor to really hold him. To when Aaron finally went back to work after the two weeks off after delivery and I held him all by myself. The wonderment of the life I created lay in my arms and I felt him as my own. I still feel that now. Every time I hold him. I have held him in the first moments of his life and I have held him at near death. It was before his correct diagnosis and he was sadly and very unfortunately misdiagnosed, he fainted twice in one day from the unknown hydrocephalus and we didn’t know then but a few days later that he was in fact dying because of the amount of water on his brain. He was drowning in his own fluid. His brain had begun to absorb the water. So when he fainted, I grabbed him and held him and caressed his sweaty head and his fear soaked eyes gazed up at mine with the same fear looking back at him. I held him in the throws of the most agonizing pain I have ever seen a person, let alone, a child go through. It would drop him to his knees and I would grab him and hold him to me. Telling him I loved him and him repeating it back to me. We would just say it over and over and I never let him go. I just held him. I have held him as they drew blood, accessed his port over 100 times for treatment or fevers that left him weak and wounded. I have held him as he vomited over and over or when he just simply wanted to hug me. When he’s been scared, mad, sad, overwhelmed and needed to get his cry’s out as he says I have held him. And in those times he has held me back too because the tears weren’t always just his.
His breathing slowed and his eyes were closed. I closed mine too and allowed our breaths to sync and react. I opened my eyes and looked at him. I looked at the boy that lay next to me. All 56 pounds 3’11’’ of him and saw him. HIM. My son. The boy we weren’t supposed to have because of my heart and we planned him. Sitting at the dining room table one evening we planned it all out. I saw my docs and Aaron saw his and we planned it. We did it all right. We ate right and took vitamins and within 8 months, I was pregnant.
I fed him organically when it was time for him to eat table foods and snacks. Baby food by the case price from Whole Foods from Chicago that my parents bought special because I was sickly as a kid and I didn’t want him to be, so I paid close attention to his diet and made sure it was all good for him. No fast food and no soda either. He still hasn’t had a fast food meal to this day. And he still got cancer. He still got hydrocephalus and adrenal insufficiency. I mean, he couldn’t just get one life threatening illness, oh no, he got 3! FUCK.
But here we are. 6 months post treatment after 15 months of weekly chemo and he’s stable. I am not sure I am mentally but he is and that’s all that matters. I am broken, bruised to the bone and as frail as a dandelion in the wind, but I am here. He’s here and I am holding him as he falls asleep.
The room is quiet and the stars that were once on my ceiling as a child glow on his now. And his walls are covered in everything super hero and he loves it. Special gifts from special people adorn his night stand and dresser and I take inventory of them. There’s so much more to things. Hugs and holding him aren’t just goodbye’s at school or hellos after school….it’s because he can go that makes them so special. I appreciate that more than I ever imagined I would. His hand pats me again and I lean in and kiss the tip of his freckled nose and say I love you and move out from under his arm and replace it with Steve, the latest Build A Bear bear that was stuffed in Chicago for fun a couple weekends back. I left his room feeling comfortable and calm. He holds me just as much as I hold him and I hope that never goes away.
I have had no choice but to become numb to so many things and feelings during this journey we have been on that will continue for who knows how long but I can still feel his little arms around me no matter how big he gets or how far away the memories go during my moments of distraction. He still fits on my lap right up against me when I get to hold him like a little baby and make him giggle and he laughs and smiles. The holds that are so tight you melt together with pure emotion and you get lost for minutes in each other. Those are the holds that stick. Those are the ones I love more than anything and cherish isn’t just a word, it is truly felt and almost worshiped after everything we have gone through. And time is as precious as he is and I will never let go of him and even better, he will never let go of me.