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.

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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.