I had to stop to get gas today. Such mundane things still need to be done. I was pressing buttons on the kiosk to enter my zip code when I noticed a button that said 'help.'
I knew it was for disabled people, but I stood there and stared at that button. The way you have the impulse to leap from great heights, I had the urge to press repeatedly on that button. Help, help, help, help.
Last night, I spent an hour on the phone, talking to Nick's doctor to find out if hallucinations are an acceptable side effect of prednisone and dehydration. It turns out that they are.
"Mom, I'm having hallucinations," Nick had told me.
"What are you seeing?" I had asked carefully. I don't know if he heard the alarms screaming in my head.
"I saw Seth walking toward me when he was just lying there. Earlier, I saw a red dot just floating around."
"Are you hearing anything?"
"No. And there was a white light too."
Not the white light. Anything but the white light. So, I spent a long thirty-five minutes last night, waiting for the on-call doctor to return my call. I tried to stay focused on breathing. I imagined taking Nick to the ER, having both my guys in the same hospital, but Nick's usual hospital is different than where Mike was. Could I manage having them in different hospitals? Nick came into the kitchen once, but I tried to sound very calm, hugged him, and sent him back to bed to try to sleep. In sleep, hallucinations are just ordinary dreams, right? Then, I texted a good friend. I knew she was overwhelmed with her own problems, but I figured she'd forgive me for freaking out on her watch. She's a veterinarian. I know, I took advantage, but I figured she'd forgive me asking questions of the one friend who might know an answer. I kept trying to breathe.
It took me a couple of hours to calm down after I got done texting with her and talking with the doctor on the phone. He was a kind doctor. He told me he'd be there all weekend if I needed him. My pharmacist hugged me today too and reminded me to breathe.
Mike. Nick. Breathing. Heartbeats. Oxygen, oxygen, oxygen. It's all about getting oxygen at our house.
I know I shouldn't be writing right now. It's 3:34 in the morning and I've spent the last hour and a half listening to Mike breathe. He can't be resting easily if I'm shining my ambient phone light on his arm to make sure it's a little pink. Last night, a nurse was assigned to watch his heart beat, to watch his breath. Cardiac care. I want one of those here, like an extravagant baby monitor, so I can go sleep on the couch, so I can cry in the parking lot at the grocery store without worrying I'll miss a big hiccup.
I can tell you that I'm not normal right now.
Nothing in our house is normal. I remember that feeling from when I was a kid and my dad got cancer. Another surgery and no one at home became the new normal for me back then. I was twelve, about Nick's age. We pretended to celebrate Thanksgiving and Christmas but did not really manage to look authentic. Nick had some of that freaky time alone while Mike was in the hospital. I told him that I was sorry that he had to grow up so fast while he was sick himself and having trouble breathing.
And having hallucinations.
Here's the other thing - I can't keep up with all the well-wishing and offers for help. I feel bad not calling people back sooner, not replying to all the Facebook notes. I can't think of things for helpful people to do. Can I really ask someone to wash the skylights over my bed so I can lie there looking at the stars at night while Mike breathes in and out next to me? I'm afraid to even open my mouth, people are so eager to help. They love Mike. Oh, I get that and I feel blessed by all this care. It comforts me to know people are praying for us.
They're praying for us. It must be really bad if they're praying for us and trying to bring us food.
I never did press that 'help' button at the gas station. I don't know how long I stared at it. Time does strange things in an extended crisis. But even though I didn't press that button, help is all around me.
All I need to do is let it in.
Thank you for listening, jb
"Mom, I'm having hallucinations," Nick had told me.
"What are you seeing?" I had asked carefully. I don't know if he heard the alarms screaming in my head.
"I saw Seth walking toward me when he was just lying there. Earlier, I saw a red dot just floating around."
"Are you hearing anything?"
"No. And there was a white light too."
Not the white light. Anything but the white light. So, I spent a long thirty-five minutes last night, waiting for the on-call doctor to return my call. I tried to stay focused on breathing. I imagined taking Nick to the ER, having both my guys in the same hospital, but Nick's usual hospital is different than where Mike was. Could I manage having them in different hospitals? Nick came into the kitchen once, but I tried to sound very calm, hugged him, and sent him back to bed to try to sleep. In sleep, hallucinations are just ordinary dreams, right? Then, I texted a good friend. I knew she was overwhelmed with her own problems, but I figured she'd forgive me for freaking out on her watch. She's a veterinarian. I know, I took advantage, but I figured she'd forgive me asking questions of the one friend who might know an answer. I kept trying to breathe.
It took me a couple of hours to calm down after I got done texting with her and talking with the doctor on the phone. He was a kind doctor. He told me he'd be there all weekend if I needed him. My pharmacist hugged me today too and reminded me to breathe.
Mike. Nick. Breathing. Heartbeats. Oxygen, oxygen, oxygen. It's all about getting oxygen at our house.
I know I shouldn't be writing right now. It's 3:34 in the morning and I've spent the last hour and a half listening to Mike breathe. He can't be resting easily if I'm shining my ambient phone light on his arm to make sure it's a little pink. Last night, a nurse was assigned to watch his heart beat, to watch his breath. Cardiac care. I want one of those here, like an extravagant baby monitor, so I can go sleep on the couch, so I can cry in the parking lot at the grocery store without worrying I'll miss a big hiccup.
I can tell you that I'm not normal right now.
Nothing in our house is normal. I remember that feeling from when I was a kid and my dad got cancer. Another surgery and no one at home became the new normal for me back then. I was twelve, about Nick's age. We pretended to celebrate Thanksgiving and Christmas but did not really manage to look authentic. Nick had some of that freaky time alone while Mike was in the hospital. I told him that I was sorry that he had to grow up so fast while he was sick himself and having trouble breathing.
And having hallucinations.
Here's the other thing - I can't keep up with all the well-wishing and offers for help. I feel bad not calling people back sooner, not replying to all the Facebook notes. I can't think of things for helpful people to do. Can I really ask someone to wash the skylights over my bed so I can lie there looking at the stars at night while Mike breathes in and out next to me? I'm afraid to even open my mouth, people are so eager to help. They love Mike. Oh, I get that and I feel blessed by all this care. It comforts me to know people are praying for us.
They're praying for us. It must be really bad if they're praying for us and trying to bring us food.
I never did press that 'help' button at the gas station. I don't know how long I stared at it. Time does strange things in an extended crisis. But even though I didn't press that button, help is all around me.
All I need to do is let it in.
Thank you for listening, jb
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