Look at these peonies my husband brought home for me! They were a bit heavy for me to hold, but my sister helped out and we got this shot. It's amazing what his little surprises do.They remind me I am not just a sick person; I'm still a wife and a woman.
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![]() Since my diagnosis, I have come up with elaborate methods for convincing myself I am OK with losing the chance to be a mother. I have a list of why kids would destroy my marriage and sense of self. I avoid places where children flock and families are happy (Salt & Straw Ice Cream Shop down the street is off limits on sunny weekends). I even tell myself this story: Evan and I get our wish; we have a baby! However, from the very start, we know something is wrong. The baby looks at us with a wicked gleam in his eyes. Before we know it, he is escaping his crib and biting our fingers and toes in the night. At school, he puts slugs in the other kids' jello and sets fire to his library books just to deprive his classmates of the joy of reading. Next thing we know, he is a juvenile delinquent. He kidnaps us, loads us up in a stolen car, and keeps us captive in an abandoned hacienda in Argentina. It's not so far-fetched. Think about it. Every maniac and psychopath you've ever heard of had a mom and dad. It's totally possible Evan and I have narrowly avoided creating the next Voldemort. I like to think that. Every now and then, though, I'm caught off guard and have no time to conjure images of evil Baby Doboga. Like when Laura and I were watching "New Girl" and a commercial for a fertility clinic came on. A picture of an ultrasound drifted across the screen and I made this sound. I didn't know humans could make a sound like that. It was instant and animal. I can't even tell you what I was thinking. I'm not even sure I was thinking yet. My reaction was pure instinct. Then pain and fury rushed in, and I ground my teeth and shut my eyes to hold it back. I don't want to feel that again. Laura understood right away. She grabbed the remote and switched to "Broad City," a show featuring the funniest and least maternal women I've ever seen. "It's fine now," she said. "What are you thinking we should do when mom visits next week?" That's how we erase it, or at least bury it. We have to. A person can only feel so much at one time. We have to pick and choose which hurts to feel. However, I still think of that awful sound. Whatever savage pain made it lives on in the shadows of my heart and the twist of my intestines, deeper and stronger than my bones. I have a big mouth. I wasn't always this way. Somewhere along the line, though, I learned to talk back, something I'm especially good at when sticking up for loved ones. Even though I'm in a wheelchair and my voice is fading, I just had to say something when a man catcalled my sister Laura from his car and made her incredibly uncomfortable. As loud as I could, I let him have it in what Laura later called a "fun mix of feminist ranting and light swearing." Suddenly, the man drove off and Laura grabbed my wrist. "Rachel, the volume is all the way up!" she cried. I must have looked at her blankly, because she tapped the microphone at my mouth and scrambled to turn down the sound on my brand new ChatterVox voice amplifier. I totally forgot I was wearing it, and with the sound up so high, I might as well has shouted through a megaphone! We hid by a big hydrangea bush and laughed so hard while families heading to the park and people coming home from work looked around for the crazy lady broadcasting obscenities up and down the block. I was just catching my breath when Laura said, "Well, you're definitely still a teacher... I know those kids just learned some new words." I started laughing all over again. She was right; I never could pass up a chance to give a vocabulary lesson. A lifetime of love
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Hello!
My name is Rachel. When I was diagnosed with ALS at age 28, I lost my teaching career, my plans to travel, and the chance to start a family with my husband. I lost my future. I almost lost hope, but being surrounded by so many people unwilling to let me go, I stepped back from the edge of despair. Now I am determine not to let a day go by without smiling, laughing, and fighting for my life. ArchivesCategories
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