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Grown Drinks in a Kiddie Cup

Grown Drinks in a Kiddie Cup

My first post COVID vaccine outing. Grown drinks in a kiddie cup (cause plastic cups are easier to handle). I belly laughed at the irony. Bestie and I sat outside and for a couple of hours, life felt normal. Revelations: Drinks are expensive and I’m a super...

Momma

Momma

Yesterday was Haitian Mother’s Day. June 2nd is my Mom’s birthday. She would have been 74. Maybe now I would have begun to worry about her no longer being with me in the coming years. I am squarely in my feelings. So much so I asked my aide for a hug as I balled...

This Body

This Body

It was told to me that there were things I couldn’t do that were important. Being told that… hearing that? Crushes a part of you that can never really be brought back or fixed. I think about those words and sentiments a lot. Some days those words collapse me. Utterly....

Sun Baby

Sun Baby

Haven’t worn a dress in 11 years It’s so comfy Legs sooooooooo pale tho I’m gonna be a bit of a Sun Baby this year #truestoriesof2021 #SMABody

Spinraza Gift

Spinraza Gift

I’ve been feeling really self-conscious about my body and it not being able to ‘do’ things like able bodied folx. Like really self-conscious. I’m not immune from this, even though I’ve been disabled all my life and have done more in my short little Brown Woman’s life...

Disabled Chronicles, No. 2i

Disabled Chronicles, No. 2i

29 The amount of seconds my labs say it takes for my blood to clot and for any potential punctures, say to my spinal column, to patch themselves shut and stop leaking. 30 The amount of minutes it takes for Spinraza to thaw/ come to room temperature before it can be...

Powerhouses

Powerhouses

I drink four bottles of water a night - 67.6 oz. every. night. Just during the night. During the day I manage another 1-3 bottles, depending on what the day brings. I committed to this months ago, after one of my previous Spinraza labs came back with quite terrible...

Strength or Life

Strength or Life

Soooo... the J&J vaccine situation has got me spooked and my anxiety about getting vaccinated while also considering my Spinraza needs has me stressed I was offered Pfizer and though that was also a contender, I declined for the moment. Do I choose my strength or...

Begin Again

Begin Again

I’ve been sheltered in place because of the pandemic since March 13, 2020. No one knew that it would be like this or last this long. I certainly didn’t. Last summer was supposed to be the Summer of Adventure. I was supposed to take my first plane ride as an adult, to...

Un-Poisoning

Un-Poisoning

In my ongoing food dramas... The new stuff came... Tessemae's Mayo. I am ashamed to call what I’ve been eating prior, mayonnaise. This tastes miles different than what I even remember Hellman’s tasting like. It’s tangy and sooooo rich - a smidge goes a long way. I’m...

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Elevate Relaxing Sleep is my YouTube channel dedicated to various sounds to help you sleep.  Check it out, subscribe and let me know how it works for you- Sweet Dreams!