News

Make the best of whatever life hands u!

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. 😂

I have a video & more pictures on FaceBook & on Instagram

Stroke-aversary/Typical day

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.

TheDemon in the Phone

Back around 2006 or 2007 (before I could talk), I started using a phone.  We had caller ID, so I only answered when my husband or kids called, cuz they knew “the system”: 1 beep on any button meant “hi, this is mom.”  Then the “fun” began (I’m being sarcastic, if u can’t tell)—whoever called played 20 questions with me (usually, the 1st question was to see if someone was there who could read my ASL,  & I would answer them with 1 beep for yes, 2 beeps for no).

Then, I got a cell phone in 2016.  This seemed silly, since I couldn’t use a phone yet, really…the phone was more to hold on to my son’s phone #, during his mission (which I “stole” because I’d been texting from it those 2 years, so my son was nice & let me keep my texting #.)

Last year (2018) my son called me & asked me to return his call…& when I went to return his call, I had like a 15 minute panic attack before calling him back—“what if he didn’t understand me & I was all alone, & there was no one to translate me?”  It had been 15 years since I held a conversation on a phone….I was kinda’ out of practice…”what do I say/ask to keep a conversation going?”  “Was this a good time for him?”

I told my music therapist about this experience, & she encouraged me to start having more phone conversations with more open-ended questions, & to also have people call me.  I started small with just immediate family & 1 friend, until I got the nerve to post about it (but to those kind friends who responded  & said to call, I STILL haven’t had the nerve to call them!)  However, my sister & I set up a weekly time to talk.  I still can be hesitant to call her  if I don’t think my speech is good that day, but now it’s not my “usual” anxiety as much as it is just knowing how much energy I  need to  have to speak,& if  talking is hard that day, it takes lots of energy to speak!

Monday, my missionary (daughter) called me—& for the 1st time ever, I wasn’t even phased when I heard my phone ring, I just answered it, not even caring that I was alone!  She seemed to understand me just fine, & I enjoyed our talk! I felt  like Supergirl when we were done because I had conquered a demon!  I am sure it has helped to talk to my sister (thanks Missy!), because I’m ok if my family calls now…someday I’ll get to where I feel comfortable answering any call(instead of getting nervous & hanging up on telemarketers! Ha! Ha!)

Time for an update…

I haven’t posted in a while, though I meant to last June (found this post):

Today (6/18),I  was using my grabber to pick up trash that didn’t quite make the trash can, & when the trash can lid opened, the trash was flung to the other side, & onto the floor. Instead of sighing, or giving up, I laughed about it.  My niece (who has been staying with us) saw the whole thing & commented about how “u know it’s a good day when u can laugh at stuff like that!”  & ya’ know what?  She’s right!  There are days I can’t even gather the strength to go get my grabber, let alone take 3 tries to throw away TRASH, & remain in a good mood!

Anyway, been a busy summer: my son got engaged (I get another daughter, Maddie,  on Oct. 19th!, & we all love her so much—she just “fits”), we finished building a home in Utah with my in-laws (WE ARE NOT MOVING!  My in-laws & my son live there for now, until Maddie joins the family & they will live in a “basement apartment”…but upstairs, there is a room for me in the house, so we can visit longer), & took (what my niece called) a vacation in a vacation: flew to London (I swear it is the most accessible place in the world!), then flew to Spain, where we boarded a cruise ship for a Mediterranean cruise, visiting another port in Spain, France, & Italy.  Then we flew to Denmark.  After visiting all those awesome places, is it wrong that the highlight of my trip was seeing people (who weren’t disabled, & probably just wanted to be alone to poop!) thrown out of the disability restrooms?!? I love Europe!

In our church, the members take turns speaking, & last Sunday I gave a talk in church: https://app.box.com/s/tu1mw6ktoulqwbnhhnk3v4nf9e0k01oy

I intended to introduce myself & my daughter vocally—I could do it at home, & I got up to the pulpit & raised my chair to standing, but I was too anxious, & ended up signing the intro & my testimony—though I did end it vocally…(thanks to the fact that I pray with my family vocally, & talks are ended the same way as prayers,  so apparently repetition helps me, too, not just when u teach kids!)

I started horse therapy again this week!  I am so happy!  Horse therapy heals me emotionally & physically, which is awesome!  Attending horse therapy is 1 of the bright spots in my week (the others are seeing/hearing from my missionary, Jessie, on Mondays, & attending church Sundays)  One of the things I miss the most is that pain u feel that tells u that u are getting stronger.  But that is why I love horse therapy so much—cuz sometimes I can feel it working!  (& Growing can hurt, so u might as well enjoy it!)  This (I think) is my 6th year. I used to be wiped out all day after a session…but my endurance is getting better, so while I could feel my muscles “waking up” (so awesome!), I wasn’t wiped out this year.  Yea, me!