Update

I love Halloween!

It has been forever since I have written… I seem to go from one thing to another, without ever coming up for air.  But this year, I had 2 Halloween costumes that were created by 2 very creative people: 1st I went to a Halloween party with my helper & friend, Angie, who did Dr. Finkelstein in one style, using make-up—Angie went as Sally, Dr. Finklestein’s helper from “Nightmare Before Christmas.”

Then, we had a trunk or treat at our church this weekend, but I wanted a more family-friendly costume for it, though…At 1st, I wanted to be a transformer. Then the Dr. Suess fish in a bowl.. But one day Mark joked about how when I talked, I sounded like E.T. & he had me say, “E.T. Phone home”. I DID sound like E.T.,  & the costume was born…so, Mark did ET in another style, using his own set of talents. He was Elliot, I was ET, & my niece was the moon.  I love how I can give  Mark or Angie a creative project, & say, “Here’s what I want to do…now make it look awesome!”  & they do!

                    

 

BTW, I still LOVE my standing chair!  Our world & our bodies are made for standing, & it comes in handy for the smallest things (like I stood up in order to pull down the medical coat for my Dr. Finkelstein costume)! I had a tilt table (a type of standing frame), & had looked at other standing frames before the standing chair, but the fact that I needed help getting into them turned me off – & now I’d add that the lack of mobility while standing would kill me, cuz I love being able to move while standing: getting into cabinets,& going down the hall (which freaks my kids out to see me “walking” down the hall!)

Several years ago we looked into a standing wheelchair, but we were in our old house, & it wouldn’t fit in my elevator.  I was super bummed, but it was a blessing in disguise: I was not strong enough then.  I was too weak to even stand up w/o assistance, & after sitting in this chair for extended periods of time, I can see how much less support it offers…it would have exhausted me!  , This chair requires much more torso strength, which I never developed until I started taking horse (equine) therapy (which I started  later–I was like a rag doll until then!)

More Than Meets The Eye!

I feel so smart!  I had dropped my keyboard, but I wasn’t strong enough to pick it up with my grabber, so, after several attempts, I leaned my keyboard the long way against my tire.  If u saw my posts on Facebook or Instagram, u know that on April 16) I got a new wheelchair that can stand.  But in order to stand, I wear a chest strap that prevents me from leaning forward.  But my backrest moves, so I leaned that forward, & I was able to pick up my own keyboard!  🙂

About my new wheelchair: Like 7 years ago, I looked into a standing wheelchair, but my old home used an elevator, & it was a bit too big.  However, it was a blessing in disguise.  Not only has the technology advanced & made it safer & capable of doing more, but additionally, I was not ready for it!  My core was way too weak, & it would have made the chair uncomfortable—so a big thanks to horse therapy, again!

Now, I am like a transformer, & if I have my knee brace & chest strap on, I can “transform” from a “sitting car”, into a “robot”!  & when I do, I turn into a “robot” that is much taller than my “human form”!  I will try to post a video!)

The last few weeks have been crazy trying to NOT sit!  (After 14 years of sitting, standing is a bit more appealing!)  In the last 14 years, I have created a world for myself where I sit, so at 1st, I was very limited to what I could do standing…But if I’ve learned anything in 14 years, chances are high that I will need to make a sacrifice in order to gain something greater. So I have spent more time doing other things.  Talking I can do sitting or standing, so I’ve done a lot of standing & having conversations—& it has actually become a challenge to sit & talk: (Maybe it is a coincidence, but I think my diaphragm is less “squished”, so I get more air…)

This means that when I stand, I lose my belly (that I support my iPad on), & I lose my lap (which means I can’t use my iPad pillow, or carry/transport stuff, & I don’t think our dog, Cooper, likes my chair too much, also, since his lap is gone: he’s always staring at me, like he’s saying, “When’s it my turn?”) , so at first, I made a make-shift “tray” for my iPad, but it was hard to type, so I spent more time deleting. I now have a tray (which is AWESOME because now I can do anything I want to do while standing—like typing this post!), though it is requiring a few adjustments from my OCD-world.  The biggest adjustment is by my dear husband, who has a myriad of straps & equipment to remove from me every time I need to potty!  🙂

My kids are adjusting, too…At 1st, it freaked them out to come home & find me standing in the room, or to walk down a hallway only to find me rolling down the hallway as I stood!  But my favorite was that one morning, while I was standing, I went to see if my daughter was up & knocked on her bedroom door.  She opened it & gasped: she was NOT expecting to see her mom STANDING outside her door!  J
I am so grateful to God who has provided me with the means to be blessed this way.  This chair has provided physical & emotional benefits (hugs are SO much better now!), & increased independence (in my personal activities, & it has also allowed me to do more therapy on my own.

i FORGOT TO POST THESE…

When I went to write my last posts, I realized I had these written as well, but I never posted them:

 

Here’s a post I started to write after my Christmas phone call with Zach:

Next time I talk to Zach (on Mother’s Day), he’ll be home like 3 weeks later!  These 2 years have gone so fast!  I remember how, when I was a teenager & my oldest brother served the 1st mission I had ever experienced, it seemed to take FOREVER!  It was so hard! But this is not “my first rodeo”, & my brother’s mission was before Skype… at least now u can see them on Skype when they call!

 

Here’s a post I started to write when Giuli left & I bawled like a baby:

Giuli left today, & I bawled like a baby I am terrible at goodbyes!  I get weepy anyway, but if my PBA kicks in, I sob!  I hate it!  & If I want to speak, I can’t, because my breathing becomes so erratic!

 

The thing I hate most about PBA is how I give mixed signals. I may laugh at a dirty joke, for example. Not because I think it is funny, but either I “sense” how the person telling the joke feels, I hear laughter, or the emotional response of disgust comes out as laughter instead of tears.

 

Here’s a post I started to write after I read the New York Times obituary for President Monson:

This part of the New York Times obituary for President Monson ticked me off: “…the church declared same-sex couples to be apostates and restricted their children from baptisms and other rites.”  That is not true at all!  If u are a kid of gay parents who are living in a way that conflicts with the church’s teaching about eternal families, how can u be baptized, & live peacefully with your parents???  You can’t!  The church was being sensitive to what could have been an issue!  & it is not like we are against same-sex attraction, but because God has taught us about eternal families, we are encouraged to live in accordance with our beliefs, & unfortunately, a same-sex couple cannot procreateJ, so it is not a lifestyle we promote!  But this has absolutely NOTHING to do with ANY prophet!  Prophets speak for GOD!

 

That’s all folks!   We are all caught up!

14 years ago…

After so many years, I had to start “doing the math” before each birthday, & now I can never remember how old I am!  I just have lost count…well, I have reached that stage w/my “post-stroke” years: after subtracting this year from my stroke year, I knew this was my 14th stroke-aversary!  Ha!

A good friend recently told me about the movie “Breathe” (a movie based on the true story of Robin Cavendish who, at 28 yrs. old — I was 30—was paralyzed by polio and given just months to live — I was given 24 hours to live. Against all advice, Robin’s wife Diana brings him home from hospital(like Mark did), & he becomes a British advocate for the severely disabled—which may explain why England is SUPER accessible!)

Parts of that movie hit so close to home that if I had seen that movie years ago, it would have been a struggle to watch, but since my stroke occurred so long ago, I was able to watch it & just relate to many of the situations & conversations (only my side of the conversation was either in my head, blink spelled, or signed!) I echo his words: ‘I don’t want to just survive. I want to truly live.’  Thank u to all who make that possible…this day is for u, too!