She was much afraid he’d be on a ventilator by morning and got him the last bed at a large teaching hospital a few hours away. We took an ambulance to the airport, me and him and his diaper bag, and flew the 250+ miles in 35 minutes. He got sicker and sicker. He kept breathing. On his own. He had every test available at the big hospital. Christmas came and went. Specialists across the country were called and consulted. No one new why my 1 year old, my bright, healthy, sweet baby was nearly completely paralyzed. It took everything he had to breath. Air in. Air out.
WordPress kindly reminded me today marks the 6th Year Anniversary of this humble little blog. Wow. Six years. I’ve had my kids and one of my cats longer. I don’t have anything special in mind to celebrate. Actually, celebration is about the furthest thing from my mind. I find myself in quite the funk tonight. The bright spot, the thing I’m holding onto to get me through is a Narcotics Anonymous meeting in a few hours. I have to go to a 12 Step meeting just to get a hug and a group prayer. Still better than visiting the liquor store on the corner or buying a bag of dope. Better than spending the night alone, trapped with my self and her worry and hurt.
I spent the day running errands and making financial arrangements for my son’s surgery on Tuesday. I will need to be well stocked because it will be hard to get to the store. There isn’t likely to be anyone I can have run out for more popsicles or jello on Thanksgiving day. Sometimes the logistics of raising kids alone are mind boggling. I have good planning and time management skills or we’d have died long ago. Always prepared, planned ahead, plans A, B, C and D. Except when I don’t keep enough options open for myself.
I thought I had plans with a friend so I wouldn’t be sitting here by myself, once again reaching out to cyber land because I’m lonely. Loneliness is still new to me. I have both enough time to myself and a clear enough mind to get lonely. I’ve been thinking I should find volunteer work. But it’s not going to be soon because I will have a child who needs me close while he recovers.
And that is where worry and hurt come in. Or maybe terror and angst. I’ve been through a lot with that boy of mine. He’s a million dollar child. A baby who’s chances were nearly equivalent to getting struck by lightening 5 times. And just thinking about being trapped in the waiting room while he’s in surgery is enough I’m nearly over the edge. I knew I’d be having to work to keep myself at all together so I made plans, but they fell through. And I didn’t make a Plan B for me. I could go to my mom’s and drink. I could call my (former? I still don’t know) best friend and get stoned. I’m in no shape to say NO to anything right now. Or I can ride it out a few hours. Let the tears flow on the key board. I cleaned like a maniac trying to keep busy. I tried my usual distraction in books. I can’t seem to keep focused well enough to read or watch TV.
I’ve learned pain doesn’t go away by ignoring it. And right now I hurt. I’ve heard it said that an addict alone is in bad company. This is me right now. Usually my own company really isn’t so bad, I’m generally a nice girl who enjoys trying to help others. I did pretty good all day keeping myself positive and cheerful though all the preparations. I kept my mind busy and focused on the bright spot of having somewhere to go.
How do I know this lesson about pain and just why I have no choice but to ride it out, feel every last drop? For the exact reason I’m such a wreck about my little boy being on the operating table.
December 16, 2005. They ran every fast test available at the small, local ER. They called in the best pediatrician in town. She was much afraid he’d be on a ventilator by morning and got him the last bed at a large teaching hospital a few hours away. We took an ambulance to the airport, me and him and his diaper bag, and a flew the 200+ miles in 35 minutes. He got sicker and sicker. He kept breathing. On his own. He had every test available at the big hospital. Christmas came and went. Specialists across the country were called and consulted. No one new why my 1 year old, my bright healthy sweet baby was nearly completely paralyzed. It took everything he had to breath. Air in. Air out. He was all I had. I prayed. A lot. I got the flu and wasn’t allowed to see him. My grandma passed away. I dropped out of college for the second time. Slowly he stabilized. He could breath easier. He moved his eyes, his fingers. A miracle. Even with the best of modern supportive care 10% of botulism patients die. Seventy days from when we went in he could mostly swallow again and I got to take him home. It took three more months before he could really eat and drink like a normal little toddler. It took another six months before he was mostly back on track developmentally. Guilt and shame and shock. Fear and worry and stress. And no one to care about me or him. People came to visit at first, the novelty wore off soon and they went back to their regular lives. Right before Christmas the hospital is full of do-gooders. And then they feel better and go away. And I stayed in a state of complete dissociation. Shock. I had to think fast and clearly. There was no room to feel any of it. I’m good at checking out when I’m over whelmed so I can break things into pieces and process them later. I’m great in an emergency, all quick thinking and fast acting and breakdown about it later. But that time it took months for later to come.
We got home. I sterilized everything in our little single wide. Slowly life got back to normal. I worked through the bad mommy guilt. The shame. The trauma. But nothing ever goes away entirely. He’s not an over-protected kid, despite my urge to keep him in a bubble. We picked up the pieces of life and as he healed and grew so did I. Kids and young women have a remarkable drive to keep developing and learning no matter how frightening the circumstances. It took a long time to deal with it, leaving it in a box didn’t solve it, I still had to feel all the shit I put away.
That’s the story, the back ground. Why I am so tore up over a tonsillectomy. I know that unlike botulism this is a common, ordinary in-and-out thing. I know that he will feel better and have a better life.
Despite my many short comings and character defects I’ve always tried to do right for my kids, to make sure they feel loved and have what they need. And I’ve been learning to do better at taking care of myself. To ask a friend for company when I know I’m likely to need it, to go to meetings and work my program. For me. Maybe I need to learn to make a Plan B for myself, too. I always have extra snacks for the kids, a second option in case the first falls through.
And I always have the option of pouring my heart out to strangers on the internet. It lacks something in warmth and contact. Crying over my key board isn’t as comforting as having companionship. But maybe someone else, alone with cats and a computer, will feel slightly less alone reading this. And I do feel better to be able to share somewhere. It’s almost time to head to my meeting. And there will be people there, people who know what it is to ride out anxiety without drugs for the first time, people who will let me cry and just be close.
I think, right after Christmas, when all the do-gooders go home, I’m going over to the hospital to volunteer. I’ve avoided hospitals as much as possible, going to see people when they needed someone but trying to stay away. Just the smell of the soap and BANG, there I am washing my hands in a little dingy bathroom and seeing my own face in the mirror, unrecognizable in fear and shock. But I know how lonely it is there and I care. I can’t give much but it will be good for me to have something to give. Even a little small way to make little small differences. I need to be more than a just girl crying over her keyboard. And if you’re still reading, thank you. I needed someone to hear that story tonight.