Hey Super Bowl. Fuck you. And while we are at it. February can go screw off too. .. Well maybe not. Maybe I love Februaury too. Because its the last month I held her. The last month I felt her heart beating..
Always strong until the moment it stopped. Just like Jennifer was.
Because Tony wants to watch the game. Because he doesn’t have the same connection to this day that I do. So we both feel guilty for upsetting the other one.
Because Jonathan just can’t stop hurting right now. His pain is strong. Intense. Real and for him so confusing. He doesn’t understand why its suddenly so palpable again.
So he is constantly looking for reasons and explanations to explain why the feelings are bubbling. But the truth is.. its simply just almost been a year. And all parts of his body remember.
We had all the kids here for the Super Bowl last year. And my friend came to take pictures for us. Our hope was some last family pictures. That show our love.. and maybe snippets of joy.
it didn’t work out that way.
That Sunday, though not the first of the month, was horrific. A day we started to really doubt all the choices we had made.. that we started to doubt if we could really give her what we believed she wanted.. to die at home. She couldn’t pee. She was in so much pain from it. From the full bladder and constant urge to go. Can you even imagine that kind of torture? And then a lack of any true communication skills to tell us about it.
im so sorry jennifer lynn. so sorry you had to endure this day.
You know I am not scared of dying. Not even a little. I am however terrified of suffering. But part of me wants to. To know everything she had to endure.
Part of me really believes I deserve to. Because I didn’t stop her from suffering. And I am her Mommy. Not even just her Mom. I was still her Mama. Thats what she called me.. A title I yearned so much for.. a title I will forever question if I deserve.
We tried to cath her. We couldn’t. She didn’t speak anymore at this point. But oh did she yell. And cry… Physical and emotional misery for all of us.
Her cries filled our home. And so then did the cries of every adult in it. Our boys went to my parents again soon after this. Unfortunately..and as their mother.. a painful admission of guilt. This is part of the collateral damage of childhood cancer. You cannot care for one that is dying while giving those witnessing it everything they need. I had no idea they could hear. .. no idea they were standing guard right outside her door.
We were trying to take her out of pain. She trusted us. She wanted to feel better.. but everything I promised .. every new medication never stopped the vomiting.. headaches still overtook her and then this.. She simply had to go potty. But couldn’t. A simple procedure should have brought relief. It didn’t.
I took her into the bath with me. I thought she seemed so tiny then. I thought there was no way she could possibly get any skinnier or simply keep living any longer.
I think she really liked being in the bath with me. I remember trying to figure out if I could make that be where she died.
She was exhausted after all of that. Her body was exhausted and so was her hope. In that moment she seemed resign to her suffering. A child should never have this look in their eyes.
Jennifer did return to us again.. her trust and innocence were never beaten by her cancer.
I eventually made my way out to the kitchen and realized it was Super Bowl sunday. I hadn’t even remembered. I heard the game and the announcers and remember being so angry. How can this still be happening? How is the world still operating? When a innocent little girl… when MY 6 YEAR OLD is laying under her princess comforter dying??
i don’t think i have stopped asking that question.
I felt so horrible that I couldn’t relieve her of anything she was going through. I remembered combing through her hair with my fingers and feeling depths of pain and guilt I can never ever accurately describe. It was like I had been completely turned inside out. Nothing was right. Nothing was where it belonged.
Jennifer trusted me to take care of her. But I couldn’t.
So now I sit in her room.. her lifeless room. I had to escape the pre-game .. because all I hear as they talk.. all that echoes in my mind.. is her writhing and screaming in pain.
suffering. dying. ..
i am sorry jennifer.
love your Mama.