oops, I did it again...

Dr. R & CASEY, PT , STRAPPING ME IN.
"Keep your arms & legs inside the ride at
all times!" 

I skiied again. 
AND I LIKED IT.
A lot!  

Dr. Rosenbluth, then my Dad, and Chloe
My support staff!

We headed up to Alta on a beautiful afternoon. I tried the cart ski and had a great time!  

Casey the PT giving the all important instructions

Ready? Check.
Scared? Um....check.

Go!


We did 8 (yep, I said EIGHT) runs in a half day .  And it was heaven.

There were even times on the lift I forgot I was in the cart ski and remembered so many great times growing up...being with my family ... my sisters ... in Sun Valley, at Targhee, and even right where we were...good ole Alta, Utah.  I felt the familiar freeze on the lift; you know the one.  Where your forehead aches, your nose runs uncontrollably, and your lips won't move without great effort - because they are frozen in place.  I always loved being on the lift.  Sometimes more than the skiing part (shhh. don't tell) because I loved just looking all around from way up high and feeling, quite literally, on top of the world.  Carefree.  And those times on the lift provided so many teaching moments that, at the time, I didn't even realize were teaching moments.  My Dad took advantage of having us all to himself on the lift and we TALKED.
A lot. About everything.  And if only those lift chairs could talk, they would tell of many wise words and lessons that my Dad taught us up there ... and we never knew we were being taught such great - even profound - lessons.

And I remember talking back.  Not in the bad way.  But for some reason, being way up there on the lift, I would open up to my Dad like I never would have anywhere else.  I told him everything.  More than he wanted to know, I am quite sure.  But I would tell him about my friends, and my teachers, and people who bugged me, and my organ and piano lessons, and I'd tell him which of my sisters were bugging me - and WHY - and there was nothing off limits for me.
And I'd even ask questions.  That was a bit unusual for me, because I always thought I knew it all.  But up on the lift....I'd finally admit, in a roundabout way, that I actually didn't know it all, and I'd ask questions I never would otherwise.

Those memories flooded back to me.  They are good memories.  And for one minute I forgot I was in the cart ski this time.  I thought about clicking my skis together to get the snow off them - you know the drill.  And then I remembered my body doesn't respond anymore and I could think about doing that all day long, but it was never going to happen.
I  almost forgot that I was in the cart ski.
Almost.

The best part about the day, though? Being up there again with my Dad.  On his beloved mountains doing his favorite thing in the world.
Skiing.
It was a good day.  Even on the cart ski.    

Saturday is a special day...
It's the day we get ready for Sunnn-day...

A normal Saturday at our house involves a lot of the R word.

RRRRRelax.  (Aaaaahhhhh!)  I'm proud to say we knocked out two movies before 2pm - "Epic" and "Wreck It Ralph".  Everyone in the same room; Chloe in and out of the phone zone, Meg doing Legos, Mati just relaxing* (*see below), Halle bopping all over, Mat cranking snacks out, and I was (a-hem) knitting a cap for my grandson who will arrive in May.  A very grandmotherly thing to do while watching a movie, wouldn't you agree?

I'd also like to introduce you to...CHEF MELEE (pronounced mah-LAY)  Yes, Halle has announced that when her chef hat is on, the name changes.

And her favorite thing to do, any day of the week, is BAKE.

We have had a few crazy - but wonderful - weeks with Chloe and Mati's school plays.  Chloe was Ethel Toffelmeyer in the Music Man, and we dare say she was the most darling Ethel there ever was.  She picked a little, and talked a little, and sang a lot, and we couldn'ta been prouder. And despite our pride, I can't find even one of the million photos I took of her. But I will.  And when I do, you'll know.

Mati's school play, Beauty and the Beast, finishes up this evening, with Mati as Mrs. Potts.  She is simply darling we can't wait to see how much stronger her right arm is than her left after holding it up as the spout for each performance. She sang her solos like an angel, and her parents may or may not have bawled like babies during the theme song, "Beauty & the Beast", which is Mrs. Potts' big solo.

We aren't biased; we are completely objective:

We have the most talented kids ever born.

We'll focus on Sunday as soon as the play is over tonight, and I look forward to Fast Sundays lately (gasp!) since Sara and Riley suggested a new focus for our immediate family: "Mighty Prayer". Riley said in his mission, every morning and every evening at 10am and 10pm, the whole mission was kneeling in prayer, where ever they were.  He said there was great power as a missionary to know that the every sister and every elder in his Florida mission was praying at the same time.  So, as a family, each Fast Sunday we decide on something to fast for as a family.  Most months it's not hard; we seem to have consistent needs within this family! Then we begin our fast together Saturday night with each of our families kneeling in prayer at the same time, where ever we are, to begin our fasts. 

We have learned in a very direct way the power of a family united in prayer. We have seen miracles in Halle's life - many miracles surrounding her very premature birth as well as the scare she gave us a couple years ago. And we have seen miracle upon miracle through the past two and a half years since my injury.  I am so humbled to think of the powerful blessings that have come from the faith of a family, both immediate and extended, when they have united in praying for me.  We have seen Heavenly Father's hand bless every part of our lives.  I love the example Sara and Riley have set for all of us, but especially their younger sisters, with this suggestion. It has definitely brought unity and closeness as a family, as well as brought great blessings to us when we are in need.

Tomorrow we will be fasting for Mat to find and be offered the right job.   He has had a few very promising interviews and now it's up to the Lord to decide. We know He will guide Mat where he needs to be, and will take care of our family as He always does.  We are blessed by the gospel of Jesus Christ and its teachings. Faith works miracles.  United families work miracles.  I'm so grateful I have both!

P.C.

I had an a-ha moment last week.  I can't get it out of my mind. And I have come to a conclusion:

I am not P.C.

Never have been.  Never will be.  Politically Correct hasn't ever been part of my life.
Neither have other acronyms for P.C...
Purely Courteous,  Polite and Cordial.  etc.

But let me be Perfectly Clear:
If you open a door for me, I'll be so thankful.

I am not disabled.  But I have a disability.
I am not limited.  But I have limitations.
I am not someone who will ever be offended when you run ahead of me and open the door for me.  I will happily and very gratefully be very relieved, and say THANK YOU with all my heart. (And you better hope it ends there.  Sometimes I start to cry and tell you how really grateful I am to you, and list all the reasons why.

I was wheeling up to a door, by myself, with Halle on my lap, and my purse flopping around next to me, on me, around me, and Halle trying her very hardest to be helpful.  And a guy sat and watched me for a few seconds.  I couldn't figure out why; I mean, we were quite a sight to see--pathetic sight--but why did he just watch?

Then he finally jumped into action and headed for the door we were heading for.  The Young Man cut me off and opened the door.  I gratefully gushed out a "THANK YOU SO MUCH!" and cute Halle said, "Yep! Thanks a lot!"  And then he said something so sad.  He said: "I didn't know whether to help you or not.  Some people get really angry if you try to help..."


We chatted for a few minutes and he told me he had tried to open a door for someone in a wheelchair a few years ago and he vowed he wouldn't make that mistake again.  Because the woman yelled at him.  She told him that under no circumstances did she need his help. She may 'look handicapped'. but wasn't, and didn't need his help with the door - 'or anything else!' She then went on to chastise him for assuming she was "disabled" and couldn't open her own door.  How did he think she got around all day every day?  Hmph!

The Young Man said he was so shocked and embarrassed at the woman's response.  They were in a very public place and she really laid into him.  He said he was just trying to help her with the door, not make assumptions about her "handicap" or anything else.  But he swore he'd never again make the mistake of assuming someone in a wheelchair needed help.  And he hasn't for a few years now.

Well,  guess what, girlfriend? Judging by that response, you probably did need his help...maybe more than you knew. And you almost scared the poor guy off forever.  Or at least for awhile!

I am not sure why there are people who feel they have to pretend to be Superman.  Or Superwoman.   When you're in a wheelchair, chances are, you need help with a door now and then.  Or a lot.  I do anyway.

I'm also not sure why the words "disability" or "limitations" or other words that are now part of my life are often so...well, debilitating to some folks. Or offensive.  Admittedly, I didn't ever crave having those words be part of my life in such a literal way. It took some getting used to - realizing that those words now described certain parts of me.

They don't define who I am.  But they are part of this new-ish life of mine.  I do have a disability now.  I do have limitations.  Many more than I ever wanted.  But it's not a bad thing.  Or it doesn't need to be, I guess.  To coin an over-used phrase (that Mat really dislikes)  IT IS WHAT IT IS.

So we went through that door, and The Young Man thanked me.   I might have been able to get the door for Halle and I...given enough time and after several attempts.  Maybe.  In any case, I didn't want to find out.  I don't need to be able to open my own door to feel accomplished.  I just needed a little help, and that purely courteous Young Man helped me out.  He was also a great example to Halle in just being helpful.  Courteous.  KIND. My favorite word.  And I love her to see such great examples of kindness.

So thank you again, Young Man, whose name I didn't even get,  for opening the door.  A seemingly simple task to both of us, that was a day changer for both of us, too.

The Wewwy Wewwy Fun Pawk

This is kind of a re-post.  A re-do.  Reiterate. Re...whatever you want.  
I will try to post regular updates on our current situation. If you're interested or even just desperately bored, read on.  Read often. If you're looking for politcal correctness, constant upbeat Pollyanna attitude, or sugar coating reality, stop now and don't read further.  Ever.  I am not politically correct.  I say what I feel and never mean to offend, so in the words of President Thomas S. Monson, "Don't take offense where none is intended".  (I don't think that's one of his famous gems of wisdom, but I heard it in a talk once and loved it---and have never forgotten it!)  I may use words that aren't eloquent.  I'll probably overshare ... TMI...consider yourself warned.   But I'm just going to get it all out here, probably more therapeutic for me than informational for you.   Just think of it as reading Marcia Brady's diary, only unlike Cindy, you're not going to get busted for it.

What I've noticed is some days I really need/want to talk about it all, and some days I just want it to go away and never speak the dreaded words...

SPINAL CORD INJURY.  Spinal infarction.  Ischemic lesion in spinal cord.   Parapalegia  Medical Rehab (as opposed to substance! Just medical people, just medical here.)  Physical Therapy.  Occupational Therapy.  Recreational Therapy (ok that one isn't so bad, but...)

Brown-Sequard Syndrome. (syndrome?!) 
Am I a syndrome?
And then there are the buzz words I'm learning ...
"Transfers"  "Mobility"  "Tone"  "Clonus"  "Hyper reflexes" "Nerve stimuli" "Spinal Precautions"  "Foot Drop"
"Handicapped access"  "Disability" "Neuro....anything"

And of course...equipment....
WHEELCHAIR (gross).  Walker.  Harness.  Boot.  Binder. Botox. Brace.   

Lots of words.  That didn't pertain to me til May 10.  But they do now.  And will forever.  Maybe not as much as time goes on, but they will be part of my new normal forever. 

Brown Sequard Syndrome.  Do I look like I have it? Because I do.  I really do.  And today I'm mad.  My sweet sister in law took the kids to the park. You know, "the wewwy, wewwy fun pawk wif a stweem?" Halle tells me.  Yep.  I know just the one; the really, really fun park with a stream.  But...
But.
But.
But!
I want to be running in the stream with them! And sitting on the bench watching them! Or laying on a blanket with them! But(!) my back hurts so badly today I can hardly sit up much less sit on a bench.   And I'd give anything to run through a stream with them at a park. I never thought that would be something I took for granted. I did. I never would again. Ever.

Sometimes I look at young moms--most of Halle's friends moms are much younger than me--and their 5 yrs olds have something amazing to say. Or show them. And I think, crouch down to their eye level and LISTEN to them. DO with them. GO and SEE with them. Don't miss a minute with your kiddos. It goes so fast. Or it gets taken away and you can't get it back.  Or someone else - who is wonderful and kind to even take your kids when its 90+ degrees outside - gets those moments with them. 

But I'm still mad that I don't get to go. Grateful & mad are two emotions that are difficult to reconcile.

Thank heaven I have good people in my life (like my sister in law!) who are willing to take the kids to the park to play. Don't get me wrong, I am so thankful for that.  It's more important that the kids get the moments than me. They're going stir crazy in this house. But...I'm going to fuss anyway. I'm just in the mood to fuss. Because I just wish I could be there with them. And I wish I had savored every single one of those moments when I could do it myself with my kids.  With my own arms wrapped around them, pushing them on the swing, catching them at the bottom of the slide. On my legs. My babies. My children. My heart.

WE'RE BAAAAACK!

A few years ago, we had this family blog that the girls had fun posting family activities, ideas, and mostly we wanted to use it as a family journal.

Then I suffered this thing called a S.C.I. = Spinal Cord Injury.

It has changed our lives.

Every one of our lives have been completely turned upside down and altered.  There were some who suggested that for various reasons we should not blog. So there are certain areas we aren't going to blog about. And we will likely keep the blog private. But I am so proud of how my children have risen to the challenges that have come their way. They have survived and thrived in the midst of things most children won't ever encounter, and they've done it well.  So among other things, we are going to journal about that here.

We have had challenges that seem obvious. And there are other private heartaches that aren't quite as obvious, but nonetheless challenging. Yet here's what we know for sure:

1. Through the Atonement of the Savior Jesus Christ, nothing is impossible.
2. Families are forever. And we want to be together forever as a family.
3. That second chances are for everyone.
4. That the gospel of Jesus Christ and the Plan of Happiness provide the only way back to Heavenly Father to live with Him forever. We want to live in a way that exemplifies that we are disciples of Him.

We are learning new things every day.  We are still finding our new normal every day.  But every day we are plugging along.  We all do our best every day.  Some days are better than others.  Some days, if everyone is dressed (in pj's) and has eaten 3 meals (all cereal) and is snuggled down in their beds after prayer (even if the only time they got out was to have prayer), we count it as a success.

We just do our best.  That's all the Lord requires of us.  I know every day I wake up and want to do my very best. I don't wake up and wonder what harm I can do to my children to make them end up lamenting to Oprah in 20 yrs.  I don't wake up wanting to embrace the chaos and create filth. I want to wear a lovely apron, pearls, and a fancy dress, heels, and sing and hum a "happy little working song" as I twirl and skip around the house while baking a pie. Just like they did in the '40's. 


Guess what? It's never gonna happen.

• First, I can't stand up to wear heels, twirl, or skip. 
• Second, when I hum, turns out I'm flat. 
• Third, I dislike pie.  
• And fourth... apron, pearls, fancy dress...really?

But we are going to blog again.  Starting...NOW!

There's much to catch up on in the two years that have gone by.  A lot has happened with me. With our family. (Welcome, MASON! Welcome, Jess!) And we look forward to more changes.

• Because fifth, we're learning to embrace change!  

Tiny Tim, Homemade Oreos, and Hand Cycling!

Another busy few days here in rehab.  For real, I feel busy! And tired.  They wear me out.  I have OT at 9 and 11, PT at 10 and 230, and somewhere in there, an hour of Rec Therapy.

 

If I back up the past few days....Sunday is definitely the day of rest here.  I didn't do ANYTHING.  It actually got boring. But there are no therapy sessions, nothing, so Sunday you just rest.  By Monday I understood why because they just nail you again come Monday morning.  Monday I had the usual 5 therapies, then we had our Family/Friend Meeting with the Spinal Cord Care Coordinator - her name is Summer - and she is a - maz - ing.  I was so touched by the support group I have. My family was there.  And good friends.  I am just so blessed and so so so grateful.



Me and Summer front and center at the family meeting.  The mannequin booty looks so much like mine it's just uncanny.

The meeting was very informative, maybe a little boring, but we got all the information out there.  I even cried a little.  Summer said, "Shelly will walk again.  It won't be the same as it was before.  It won't be unassisted.  But she will walk." And I lost it. 

My awesome friend, Stef (Lamoreaux) Macfarlane.
Looks like she's making the best of the meeting.
We've been friends since high school  We lined her up
with her awesome husband, Bob, who
was Mat's fave mission companion. They
have been there through thick and thin for us for
YEARS. They are Tanner's second parents.
Or maybe first parents.  Anyway, we love the Macfarlanes!

During the meeting, my new wheelchair and walker arrived!  I was seriously so excited it's bizarre.  This is me seeing it for the first time.  Almost as good as Christmas morning.  Almost.

Add caption

The test drive!

Yesterday was probably my busiest - and best - day yet.  I had my 2 OT (occupational therapy) sessions, my 2 PT (physical therapy) sessions, and my  RT (recreational therapy) session. Now get used to those words because it's acronmys from here on out, people.

During my first PT yesterday, I was able to try crutches! They are the Tiny Tim kind, and they had a therapist on either side of me, but I did it - and loved it.  There's something 'better' about crutches for me than a walker.  Maybe I just need the tennis balls on the front of the walker, and a nice basket with flowers on it or something, but right now I loathe the walker.  And it felt way more normal to use crutches to attempt walking.  I am seeing I have more hang ups than I ever thought!  And the good news? They come in different colors -- red, blue, pink, purple, etc.  Oh you know I'll be scoring the pink ones.  And I juuuuust happen to have extra rhinestones from the last time I blinged out Halle's glasses.  That bling may just be finding its new home on some Tiny Tim's...

Then it was time for OT.  Natalie (the OT) said, "Hey, would you like to bake again for OT?"  and right then, another therapist walked by and said, "Oh--thank you for the banana bread the other day. Are you going to be cooking again soon?"  and I looked at Natalie and she blushed a little.  I said, "Yep.  Baking today for 'therapy'!"  So into the kitchen we went.  I decided to make homemade oreoes.  They're so easy and everyone likes them.  I made a batch of vanilla and a batch of chocolate.  About mid way through, another therapist came in and asked if I could use a buddy.  I said sure...?   So guess what.  I have a new friend....

Her name is Lois.  Lois lives in Chicago and is out here visiting her son in Park City. She was on the toilet one day (seriously, she just rattled this off like not big deal) and couldn't stand up so they took her to the ER and she'd had a stroke.  She has no feeling or use of the left side of her body. So her goal during her session was to stand for 5 min.  They decided we should do some teamwork and I should frost the one cookie and she should top it to make it an oreo and stack it on a plate.  (this is my day.  baby steps. baby steps.)  So I tried to be obedient and remember "there's no 'I' in team", and Lois and I were off to the races.  I tried to not notice her mega wedgie when she stood up in clingy sweatpants and I'm sure she tried not to notice my hideous hair.  I'd frost a cookie (from my chair) and hand it up to her to top and stack.  Well, she tried, bless her heart.  But the tops were on crooked she didn't put pressure on to squeeze the frosting to the edge of the cookies. I was like LOIS THROW ME A BONE HERE!  I was just about to get a twitch and then Natalie said, "Why don't you top them, Shelly, and we'll just have Lois stack them."  Whew.  So I topped them and Lois stacked them. And stack them she did. Lois decided to make the leaning tower of Pisa.  I said Hey Lois, how about we only stack 2 or 3 high, then they won't slide all over.  OK I am not anal about very many things.  Probably hard to find anything I really am anal about.  But I like my baking done my way.  And Lois wasn't doing it my way so I even thought I'm gonna bump her over in my chair! Anyhoo, Lois didn't listen to me about the Leaning Tower of Pisa so then I said, how about we separate them by chocolate and vanilla, thinking Lois should learn to sort more than stack.  It worked! Then she didn't pike them 1 mile high and they quite sliding all over. What a relief.  See, rehab is very stressful. Cookie stacking can just cause such tension in spinal cord injury recovery.  I think Lois and I were both exhausted.