People keep asking me how I am, and I do not know how to answer. How am I supposed to answer that question? What does it even mean?
I am tired. Clearly.
I am stressed out. Obviously.
I am awed by my husband. Again and again and again and again.
I am amazed by my children. Again and again and again and again.
I am overwhelmed with gratitude, to Mike’s patient care advocate at the insurance company and his care team at both hospitals and my in-laws and my parents and my neighbors and the staff at my daughters’ school and their bus driver and the woman who cleaned my house for free to “pay it forward” after her grandfather passed (hire her- http://www.krakenkleaning.com/), to friends who have organized meal trains and childcare, to friends who have MOVED OUT OF THEIR HOMES SO MY FAMILY COULD STAY THERE, people from the internet I’ve never met in real life who have shipped ice cream to my children and brought meals to the hospital.
But despite the constant help, the amazing support we have, there is so much still to do that really can only be done by me.
There is only one person who knows where everything in the house is, and she’s not in the house.
There is only one person who knows without symptoms when the kids have strep.
There is only one person who knows where to smell for if the little one wet the bed and tried to hide it.
There is only one person who can write the notes of comfort and love for the children’s lunchboxes.
There is only one person who can sit with my children and talk about how much we all love Daddy and want him to come home, and also how smelly his farts are, and also that it’s okay to be scared, and if we’re scared, we’re scared together, but that also Daddy is the best person we know, and the bravest person we know, and we love him so much it hurts to know he’s not coming home yet.
There is only one person who can tell my seven-year-old that if she wants to call herself ‘fat’ she’s welcome to, so long as she does it with love.
And that person isn’t there to do those things 85% of the time, because that person is also the only person who knows exactly which doctors said what on which dates, and how many more degrees in motion Mike used to have in his ankle. There’s only one person who was trained in helping transfer him from the bed to the chair, who was trained in cleaning his wound, who was handed the medications for transfer and was tasked with recording the details of their administration.
And it’s not about any of that. It’s not.
The fact is, I WANT to be doing all those things. I WANT to take care of the kids, with all its frustrations. I WANT to spend every minute with my husband, pushing him in OT and cleaning his incision and laughing so, so much with him. I WANT to be doing all of it. All of it. All of it.
And there’s the exhaustion. I can’t.
Oh God, I hate those words. When the children complain that their homework is too hard, or that the cat box is too icky, and they say, “I can’t,” I always stop them. “No,” I say, “We don’t say that. We say ‘I will try.'” And they try. And then they do.
And when Mike is struggling with his OT, and he says, “I can’t,” about extending his fingers, I stop him, too. “Don’t say, ‘I can’t,’ say, ‘I can’t yet,'” I tell him. And he smiles in that way that lets me know he’s annoyed, but also that he gets it. That the attitude matters, and that yes, he will. And he looks at me out of the corners of his eyes when he talks to the care team and he DOESN’T say, “I can’t,” he says, “My weaker hand,” or, “I’m trying.”
But I can’t. I can’t be home to pack the lunches and be at the hospital to track the pills. I can’t be home to change the sheets and also be present to make him do his exercises. I can’t make dinner for the kids before putting them to bed while tracking down his PT schedule for the next day. I physically cannot be in those two places at once. I can’t.
And I HATE it.
So how I am is good, I guess. All the things I’m doing are things I WANT to do. I WANT to be here, wherever I am. It’s one of the biggest blessings in this sort of situation, you are always prioritizing, and you always know you are where you should be, because if you weren’t, you would be somewhere else.
But I can’t be all things to my children, and that’s the job of a mother, isn’t it? To be all things?
And I can’t be all things to my husband, because that’s NOT the job of a spouse. It’s NOT the job of a wife to be everything, but the purpose of marriage, as I understand it, is that together you form a partnership that makes everything better, that makes everything easier. And there is so much of this I cannot make better for him, that I cannot make easier for him. There is so much of this I cannot take off his plate once in a while. I cannot urge him to take a day off and rest. I cannot do his chores for the day. I cannot fix this for him. I cannot do this for him.
So how I am is frustrated, but not with anyone. I am frustrated and tired. I am anxious and tired. I am optimistic and tired. I am happy and tired. I am so goddamn proud, so unspeakably proud of my family, of Mike’s determination and attitude and literally everything about him; and of the kids, and their kindness and thoughtfulness and ability to sit with these feelings and share them with me. I am so fucking proud of all of them.
But there is so much more to do. There is so, so, so much more to do.
There is so much more than I can do.
It’s a long road from home to Shirley Ryan. It’s a longer road back.
Read more about living with glioblastoma here: F*ck Cancer: A Long Overdue Rant
Read my most recent post here: When Morning Comes to the Neuro-ICU
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