I LOVE this video (https://youtu.be/HXPbbmRG45A) & echo all they say…they even touch upon some of the struggles I’ve never mentioned, & just “deal with.” I am a really big advocate for disability awareness–that’s the whole reason for my website, jenannlynn.org. I just want people aware that I’m a person too, & to see some of my struggles & joys. Please join the fight for inclusion!:
Before coronavirus, I actually had a good routine set up…I bet u felt like u did, too. Oddly, while the world has slowed for everyone else, & made their lives less busy, my world has started spinning, as I can get more help now, & w/that help, I have the option to do so much more. Crazy, huh?!? (Interestingly, my world has only changed in ways where I try to become more like “everyone else”: music & yoga therapy are online, & horse therapy temporarily stopped—speaking of…I am REALLY concerned about them, so if like to help them out by gathering donations. If u’d like to help, go to http://www.redarena.org/ … Once here, go to “donate options” under “support” on their toolbar.)
I thought I wanted a busier life, but after a brief reminder, I realized that I don’t want that! I don’t feel as happy—even when I’m getting done what I want done—if I have to fight for my time alone to have time for my personal scripture study & meditate. Seriously…I’m happier on the days I fit those in! In trying to find a new balance, it occurred to me: I’VE DONE THIS BEFORE…meaning, I’ve had my life turned upside-down on me, very suddenly, before & gone from being a crazy, busy mom to being well…uh…me! Someone far less busy. Someone who looks back & can see how beneficial it can be to be less busy.
I’ve had a few weeks to “busy myself up” again, so let me share how I’m trying to figure out my new schedule, & maybe something will stick out for u as u figure things out for u.
1st, try to avoid any depression & be grateful for what is still a “can do.” Then, I use the spirit to help me figure out my “good, better, best” activities: ie, I’ve always wanted to do therapy daily, but w/the business of other people’s lives, that wasn’t a possibility before. But now it is! So now, part of me would like someone to come at least a few hours daily around lunch for help with lunch, potty, & therapy…but that seriously messes with my routine (meditation & personal scripture study, amongst other things…& now that my family can be there, I’m not!) So, I need to figure out if there is there something better or best I can do? Cuz while daily therapy is good, is it “best”? Tuesday’s used to always be my “date day” with my husband: going out to horse therapy, going out for lunch, & maybe going to the movies or to run errands with Mark—so maybe finding a way to still spend time w/Mark is better or best? & now that my family is around more, shouldn’t I find a way to interact w/them more?
Months ago my daughter (who was on her mission & has since been sent home) was facing a tough decision. I told her, “U’re faith is being tested by not knowing. God is forcing your faith to grow & making u take a “step into the darkness.”
& when she was physically hurting & felt like she was slowing down others, I told her, “I totally feel for U about your frustration with slowing down the work…I get it. But God probably appreciates u for doing your best….even if your best is just rolling out of bed one day. Reframe. Accept what u are capable of doing. God does.
Would U tell a friend what u are telling yourself? Be nice to yourself.”
Ever notice how much easier it is to dish out (rather than to take) advice? Maybe I need to take my own advice & be nicer to myself, acknowledge that I’m doing the best I know how, & grow, by taking a “step forward into the darkness.” I encourage u to do that, too!
I posted this on FaceBook & Instagram,but in case u still missed it, I thought I’d share it here:
At first, this virus thing wasn’t affecting my life too much…I’ve had to face some cancelations, but now I’ve had to start canceling therapies, so it’s getting personal. Not fun. Yoga & music therapy I’m doing via Skype/Zoom, still not my favorite! 🙄
However, one of the reasons I married Mark is because, if he wants to, he can make the best of any situation. (I had no idea how useful that’d be!). Today, we were using the paintball guns to shoot stuff. Quite therapeutic. 😂
This year on the 16th day in March, it will be 16 years since my stroke, & I will also be one year older than my mom was when she had my baby brother, Mike (there are 7 years between my 2 youngest brothers–can u even imagine thinking for 7 years that u are done having babies, & then–surprise! Time to start over!) Not only am I about the same age, but instead of a baby, my son got married, & soon I will be an empty nester: 3/5/2020 was a big day for our family, as it was Sophie’s 18th birthday (I can’t believe I have no more KIDS, only ADULTS!) & it was also my daughter, Hermana Jessie Lynn’s hump day (in other words, her mission is halfway done)! I KNOW the Lord is watching over her & protecting her!
So, what have I been doing all these years? If u are just looking at me, I don’t come across as someone who can do much, but if u get to know me, u might be surprised by all that I can do (& the advancements in technology the last few years have only increased my independence).
Years ago, Jack Rushton (who was paralyzed from the waist down) said it best when he said (emphasis added), “Lying in bed I truly feel handicapped, but in my chair, sitting upright, just think of what I can do. I can work on the computer, read and write, or go outside and sit in the sun or roll around, and if I’m real lucky, get hauled into the van (or go on a plane/cruise ship) and go off with Jo Anne (Mark) for a never ending adventure. I truly am a lucky — or as I prefer to call it—a blessed man.” (woman!”)
So I thought I should address my typical day—from my husband’s eyes: I have taught early morning seminary for the past several years and we usually get up at 5am. I help jenny use the toilet and then I shower both of us. I dress her and quickly do her hair. She has been attending seminary with me so I load her up in the van and drive her to the church where I commence to unstrap her (and the chair) and help her out of the van. After seminary, I load her back up and unload a few minutes later once we get home. I make her breakfast and give her some liquid meds, but she is able to get her pill meds from the prepared med box by herself and take them with food or water. Jenny can get water from the refrigerator, as well as some prepared food from a refrigerator drawer. She needs assistance with a paper towel bib to protect her clothing while she eats, but she does all of her own feeding. Self-feeding is not always pretty by the time she is finished, but Jenny literally buys Shout Wipes by the case. Jenny drops her dishes in the sink and throws her garbage in the trash can. We have tried to hold family scripture/prayer sometime during the day. I will shortly thereafter help her use the toilet again and she is able to access her computer and other supplies in her craft room with little or no help for most basic things. Jenny has a few exercises that’s he does with and without help from others- mostly with help. Her new wheelchair is a “stander” so she can get standing exercise and reach higher things on shelves without help. Jenny has discovered grocery deliver service, Amazon, and other related tools to be a huge blessing for her independence. Our current home has smart home technology where she can play music, turn on/off lights, adjust the thermostat, and open and close dose remotely from her iPad. Jenny usually does not need assistance until lunch (which she can get on her own if need) and then to use the toilet shortly thereafter. Things kind of repeat until dinner (which is the similar routine as with lunch). Jenny requires me to dress her and help her use the toilet one last time before bed. I carry her to bed and get her situated with a rolling stand that has her iPad and ear buds. Jenny needs significantly less sleep than me (or average humans) so she will often go to sleep after me and get up well before 5am and either lays there or keeps herself busy on her iPad. I no longer have to move her several times each night. It is less than once a week where she needs me to roll her on her side or reposition her in some way. I own this to the magic of memory foam and her ability to make slight movements on her own. I still reposition her when sleeping in hotel beds, but still not as often. Depending on the day, I may go to work and one of Jenny’s two helpers will come and help with the lunch and bathroom routine and other tasks Jenny is working on. She is always working on something. I am a little upset at the doctors because they promised me she will be sleeping all day in bed. Jenny is ALWAYS working on something. She makes me tired by her constant activity.