have a new seat

The new chair - and the geek came free!

     My mom said that I sounded good today.  I feel good but part of me is feeling like we are in the eye of the storm.  It just seems that whenever we start to "feel" like things are going well, we get pulled back.  It is hard to remember not to focus on the "feelings" as opposed to the "knowings". 
     A lot of time, my days/feelings go by how Jarrad is.  He has been really upbeat, therefore, I am upbeat.  Therapy is going well.  He is getting more and more confident with transfers and doing things for himself.  I am listening to him on a conference call and I hear his confidence and authority.  He sounds like his "old" self. 

     I don't know how I am going to survive him working from home!

     And today, we got HIS chair!  Yeah! 
     It is better balanced and lighter.  The wheels are ergonomically correct and it fits his body.  That is a very happy paraplegic right there!
     Wanna hear a joke?  It is my own creation:

 2 paraplegics walk into a bar. 

The bartender throws the towel down and yells, "It's a miracle!".

  

Get it?  They walk into a bar!  HA! 
     Yeah, no one else thinks its funny either.  Well, maybe a little - but they are laughing AT me. 
     Here's the thing, I may have been a little punchy when I created that joke but if you don't laugh, you might cry and if you have the choice, laugh.  There is too much sadness sometimes and you have to take joy when you can.
     So even if this is the eye of the storm and we are going to be hit from the other side (Thank you Hurricane Sandy for this metaphor), I feel like we will be a little bit more prepared (read energized) because we took some time to just be happy and rest in that happiness. 
     Yeah us! 
     But don't you worry folks, I am polishing up the rest of my sit down routine and will have you "rolling" in the aisles soon!  
      
    

learn lessons

     Poor Sam.  Every day, we take Emma to school and every day, he wants to go too.  He seems to think that school is where he gets to play with other kids (I know, because he says so).  We could send him to preschool but quite frankly, he isn't ready.  He needs to learn quietness.  That doesn't involve sitting in front of a TV.
     Emma is learning to read.  I love hearing her sound out words.  I peeked in on her the other night and heard her trying.  She really loves school and I am so glad.
     Jarrad is learning to transfer without a board.  He is learning not be afraid.
     And me, well, God is smacking me over the head with this lesson;  I need to change my mind.
     I can't tell you the number of devotions or articles I have read or heard lately that talk about my thoughts and my mind.  Ready for a science lesson that (once again) proves God?  That sounds convoluted.  God proves science, some would say but we are a backwards people who like to have our theories prove the author as opposed to the other way around. 
    Ok, so, any pattern of thought or action creates a groove in our brain.  Usually, it is light and the brain "heals" from it.  But if the pattern or thought is repeated, it creates a groove (kind of like the ones on our carpet from Jarrad's chair).  Eventually, the groove becomes deeper and deeper so that it is a permanent part of our brain.  You can read about it here http://www.philipshapiro.com/art-habits.html if you are really interested.  I am not endorsing Dr. Shapiro; this just happened to be the first article I found and I was struck by The Buddha's quote.
     What is significant is that God told us from the beginning about this; even though at the time, the workings of the brain were not understood.  HE KNEW because He created the brain how the brain works.  HE KNEW that if we keep an action going, it becomes a very real part of us.  That is why we are told in Romans 12:2 to "not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is—his good, pleasing and perfect will." NIV or as some other translations put it,

 Don't copy the behavior and customs of this world, 

but let God transform you into a new person by changing 

the way you think. Then you will learn to know God's will for you, 

which is good and pleasing and perfect.  NLT

or

Don't become like the people of this world. 

Instead, change the way you think. Then you will always be 

able to determine what God really wants-what is good, 

pleasing, and perfect. God's Word Translation 

    It is why children's books such as "The Little Engine that Could"  are such classics. It is why we have self - help books.  It is why we have affirmations. It is why we talk about "effective habits". 

     I have been bombarding myself with negative thoughts since I was an adolescent so much so that I never thought I would never be worth a second glance.  Then I met Jarrad.  He was unlike any guy I had ever met.  I had felt so unlovely growing up that it still is in my head that I am not attractive.  I am working to overcome that.  (It is not easy).  But even more so, I need to change the "This sucks" and "This is so hard" thoughts of this recent experience.  Because that is what will pull me and my family down.  It is what the world would do.  I think of Job. He was expected to behave a certain way.  Everyone did but he didn't do that.  Only God knew he wouldn't.  I guess that is because Job renewed his mind.  See how the OT connects to the NT?  I love seeing the interconnections of everything and that is only one example. 

     Yes, this sucks and it is hard - no one would dispute that but it could be worse.  It could be harder.  I need to find what is pleasing and perfect in this because it is God's plan.  This is meant to be pleasing and perfect and my mind needs to reflect that.  I can't even say "I think I can"  it has to be "I know I can".  

      That is going to be hard BUT I know I can do it (with a little help).

have another reason to eat cake

     This one has 6 - six!  candles on it.   Happy Birthday Emma!
     I told her this morning that 6 years ago today, she wasn't born yet.  She thought I was teasing and saying that she didn't exist.  The past and future are still pretty abstract concepts for her.
     6 years ago at this time (3 pm with still another 7 hours to go) - she still wasn't born!  I think I was asking for an epidural at this point.  (After 6 hours of pitocin - patting myself on the back  here!  NOTE - pitocin is horrible stuff!)
     Happy Birthday, Beautiful Girl.  You make me smile.  You make me so glad.  You made me a mom.

Newborn - onesie asks "Does this diaper make my butt look big?"

Questions for the Birthday Girl

1.  Who is your best friend?       Christina

1st birthday

2.  What is your favorite thing to do? Play

3.  What is your favorite color? Pink

4.  What is your favorite toy?  My new Little Pony Castle toy with Shining Armor and Princess Cadence

5.  What do you want to be when you grow up?  An author

6.  What makes you happy?  When Christina comes over

7.  What makes you sad?  When Sammy punches me and doesn't share

8.  What is your favorite show to watch?  My Little Pony

3rd birthday

9.  What is your favorite book?  My Little Pony  (do we detect a theme?)

10.  What do you love to learn about?  The letters of the alphabet

11.  What is the best part of your birthday?  When I open presents

12.  What is your favorite treat?  Chocolate cake

13.  What do you think about before you fall asleep?  Lukas  (hmmm, should I be worried?)

14.  If you could meet someone famous, who would it be?  Santa

15.  What is your favorite (non treat) food?  Apple

16.  What is your favorite thing to do outside?  Play with Sam

6th birthday

17.  What is your favorite outfit?  My princess dress

18.  What is your favorite holiday?  Halloween

19.  What is your favorite thing to do with Mommy?  Play with Ponies

20.  What is your favorite thing to do with Daddy?  Play cars

21.  What is your favorite thing about Sam?  That he is good (even when he is punching you?)

start our firsts

     I think I scared my folks this weekend.  This was the first time that we had guests down and Jarrad wasn't in the hospital.  I was not leaving instructions and dashing off someplace to meet with doctors or to be with him. 
      I kind of didn't know what to do with myself. 
      It was also hard because those memories that I was trying not to remember were really close to the surface. 
     I cried. 
     I think I was a mess. 
     Sorry Mom.  Sorry Dad.  Really, we are doing ok.  I would even venture good most of the time.  We laugh and play and fight. 
     I know you are going to worry anyway, but don't worry more than usual.  It will get better. 
     Thanks for all your work this weekend.  It made life a whole lot easier. 
     My dad put up an exterior light which will make coming up the ramp easier.  He also put in a threshold ramp so Jarrad doesn't need me to boost him 2 inches to get outside.  Mom made a pie (it was delicious - I ate half.  Really.) and took Emma and I shopping for Emma's Christmas dress.  If you have never been shopping with a 5 almost 6 year old girl who gets to pick out all the sparkly dresses she wants and then gets to twirl and pose, well, you should.  It is a pick me up. 
     They also took the kids on a picnic so Jarrad and I could stream one of the movies that we missed this summer.  We relaxed and cuddled - better than going to a movie theater.   
     It is just hard to have memories.  It is harder to see them reflected in Jarrad's eyes.  See, what would usually happen, is that Jarrad and Dad would work on a project.  Jarrad says he always learns so much from my dad.  It was hard for me to see Jarrad and know he was thinking that he wished that he could help.  I know that he feels useless sometimes because he has said so whenever someone comes over to help.  Usually, he would be in there doing it. He was able to fix my mom's computer and I think that helped some. 
     We are ok.  We are just figuring it all out.  I think that when we figure it out, it will be better.  In the meantime, we just have to go through a whole bunch of firsts.  I really can't wait till we get to the seconds. 

celebrate a birthday - almost 4 decades!

Jarrad's 2nd birthday present

     No, not me!  For the next month and a half, Jarrad is 3 years older than I am.

And a 5 year present

     Happy 38th birthday, Sweetheart.
     This birthday is so bittersweet.  And not just because you are staring down the darkside of 30 (and no, I don't tire of cracking jokes about that!).  Emma just said, "Daddy!  Tomorrow is your birthday!" With only the enthusiasm that comes from a child that is loved and cared for.  She didn't see that your smile didn't quiet reach your eyes.  Someday, maybe, she will understand that growing older isn't necessarily a good thing. 
     I know that we have been challenged and will face more.  Most of our dreams are dead.  Some have been changed.  Growing older has just acquired more

As a teenager - ok, not birthday

challenges than before.  But I still look forward to
growing old with you.  
     I love you.  From the first date, you proved that you were unlike any other guy I had ever met.  You listened to me and thought that what I had to say had merit.  You laughed at my jokes.  You challenged my intellect.  You challenged my world view and made me define my beliefs.  You gave me courage to be myself; to be my better self.  

sharing a birthday with our girl

     You are a gift.

This year  (2009) was a U2 concert

     Happy birthday, my heart. 

and how they are

     I just got off the phone with my sister.  She asked me how I was doing.  Fine. I said.  She wants to know if I am getting out; if life is getting back to "normal".  Yes and no.  The answer I give confused even me. 
     We have a friend who is a massage therapist.  Used to be, Jarrad would go see her.  Now, she comes to see him.  She came to the hospital to be with me - us -  when IT happened.  She is a good friend.  When she came to work on Jarrad, she asked me how my back was.  Fine, I say.  She shoots me a look.  I know that look.  I am in the process of perfecting my own towards my kids.  It is the "Really, are you sure you want to go with that story?" look. 
     I am fine.  Ok.  Good.

     I can walk.  I can hop into the car and drive to where ever without worrying about meds, cathing, a 30 lb wheel chair that I have to transfer in and out of.  Spasms don't throw me. I can actually drive the car as opposed to being dependent on someone else to drive it.
     So I am fine.

     Saturday, we all loaded up and went to a pumpkin farm.  Jarrad sat in the sun and I took the kids inside the event.  A corn bin, a hay maze, followed by a hay ride and then picking out pumpkins.  Last year, we went and Jarrad walked in.  He watched one kid and I watched the other.  This year, I depended on a good friend for help.  Last year, he took each kid and scoured the field for perfect pumpkins.  This year, I carried 2 out to the car, with Sam saying "cawry me, cawry me" the whole way.
    I see what was, what I think should be, and what is.  Last year, what I had assumed this year would be like, and what this year is.  This triple vision has brought me to my knees sometimes.  I deal with it by trying not to think about last year - pushing it away, not looking at pictures.  Ignoring the past.  That is not good because I can't remember good times without hurt.  Even now, pictures pop into my head as I write this and I sit here crying.  I try not to think about plans we had made - the what I assumed would be.  Like this weekend, we should be packing to go to Great Wolf Lodge.  We had decided that instead of gifts, we would do things for birthdays (and a small gift - come on, what is a birthday without one?),  Emma wanted to go to GWL for her birthday.  That is not happening and it hurts.

    It hurts when I hear Emma say to Sam that we can't go this year but when Daddy's legs heal, we can go next year.  It hurts when I think that Sam will never remember Daddy carrying him and the inner tube up the flight of steps to go down the large water slide.  It hurts when I think that Jarrad can't go down the large slide again.  Thinking, remembering, just hurts.
     I used to scrapbook.  I think that this will be the lost year. 
     I have never understood living in the now before.  It is this moment where there is no past and no future to think about.  I make small plans - like instead of GWL, I am taking Emma and her BFF out to dinner and then we are going to Target or Walmart to create a wish list for Christmas.  I am going to let them use scanners!  They are going to have a ball!  And it is cheap!  And has the added bonus of being able to send to grandparents.  (Disclaimer - got the idea from a friend - as most of my really good ideas come from this absolutely fabulous group of friends that I have.)
    This is why my answer to my sister is confusing.  On a given moment, if my vision is narrowed, I will be fine.  I went to book club this past weekend.  I bought a new purse.  I don't know what to do with myself when Jarrad isn't here so I feel a little lost.  I get about 6 hours of  sleep every night.  Friends come over on Sundays for food and fellowship.  I take Emma to dance on Mondays and spend the 45 minutes waiting reading a book and enjoying a treat from whatever fast food establishment I choose (usually McD's). I try not to think to much because then I am not so fine.

are almost normal

     Jarrad is of too work - and I am not taking him.  Emma is in school.  Sam is watching cartoons and I am here.  It almost feels normal. 

own hubris

    When I went to college, I was going from a small (20 in the graduating class) independent study based private school to a lecture, classroom setting.  I thought I would be smart and go to a Bible college my first year.  That way I could learn how to learn in such an environment with content that was safe, familiar.  It was a good idea.  And I learned a lot.  Such as how incredibly sheltered and naive I was.  Now, with my own children, I want to create that for them.  There was an innocence there that I treasure now.
     But I digress.
     I took an English 300 level class.  As a freshmen.  As a freshman, I was astonished at my own boldness.  Taking a junior/senior level class!  Gasp! (again, see the naivete?).  That class was one of the best classes ever and it justified my reasoning for "THE PLAN".   The point?  The final exam was to take a selection of works that we read and write an essay on a common theme.  Simple enough.  Unless, you were overwhelmed with a new type of learning and everything else.  I didn't really "get it".  But I do remember the test and I learned a lot in that class.  (again, get to the point, PLEASE!)  My theme was "hubris" which is excessive pride or arrogance to the point of losing contact with reality.   
     Why am I talking about this?  Because I feel that I am in danger of it.  I know that folks read my blog and I like it.  It makes me feel good when I hear that someone reads it.  People I don't even know.  I have always wanted to be a writer.  I have always wanted that fame - a quiet kind of fame.  Who really looks at the author's picture on the book jacket?  But I have always wanted to say (with a bit of pride) I wrote that.  Blogging fulfills that desire for me as I can publish.  But it is also a record of my feelings and thoughts - a diary.
     I am glad that people I don't know are reading this.  I am glad that for some, I put into words what they feel.  I hope it helps.  It helps me.  I just need to be aware of my own shortcomings (arrogance - just ask my siblings!).  So, I don't post on facebook what I write (well, sometimes, if I did something I want to show off!) and I don't always publish what I write (somethings should not be sent out into the world).  But if you like something or it touches you, please let me know.  This world, for all of its technology and crap, is a very lonely place and sometimes, we all want to know that what we are going through isn't the first time even if it is unique to us. Remember that first heart break?  Yeah,  we have all been there. 
     So I will try to write from the heart and as it is cathartic for me, I hope it makes you feel not so alone. 

                                

and autumn

    It is fall here.  I love fall.  I love the (well, up north it would be but here it is still warm so I guess I love the idea of) cooler weather.  I love the colors.  I love the smells.  Ripening fruits and vegetables, glistening  I love the magic of the leaves falling and how they swirl.  I always imagine that if you could step through the swirl, you would be taken somewhere wonderful.  As a kid, I would try to catch a falling leaf.  I thought if you caught one, you would have good luck.
     It would be ironic if Jarrad fell during the fall and not just because of the play on words.  Fall is usually associated with dying things.  Perhaps we shouldn't think of it as dying but rather as coming to rest.  Followed by sleep.  Ah, got to love euphemisms.  We try so hard to "gentle" things.  Sleep as opposed to death.  We call it seasons of life.  How often is autumn associated with old age or death.  I never felt old before this year.  Now, I think that 35 is younger than I feel.

"God is our refuge and strength, always ready to help in times of trouble. So we will not fear when earthquakes come and the mountains crumble into the sea. Let the oceans roar and foam. Let the mountains tremble as the waters surge!" Psalm 46:1-3 

     This was the header verse for my devotion this morning.  Funny how sometimes what is supposed to comfort you only seems to taunt you.  Where is my refuge?  Because I could sure use one.

                                                                *******

Yes, I enjoy the irony of the above with this blog.

 

 

 

     This is what I wrote several hours ago.  Since then, I have taken care of my kids and husband, cleaned the kitchen and done a couple of loads of laundry.  And watched a comedy.  The "surging of waters" has faded somewhat.  Surging, crashing, roaring.  That is how it feels sometimes.  You can't catch your breath.  I had a migraine earlier this afternoon.  I was able to nap for about 90 minutes and that was wonderful but Jarrad wasn't feeling good either.  I needed to get up and take care of him.  He felt bad about it and kept sending me to lay down and I felt bad that I couldn't stay up so that he could lay down.  If you ever had a migraine, you will understand that nothing stops the jackhammers in your head except for time.  Then I felt bad that I can't even get sick.  So where is or rather, was a refuge for me?  My pity party involved wondering when I get to be taken care of.
     You know what the worst part of this is? That Jarrad went to work this week.  And yes, 4 40 minutes drives really are crappy but he was feeling good and so I was feeling good.  In fact, I was feeling like we were going to make it.  That everything might be ok.  And then he calls because he isn't feeling good. And the headache I had since I got up escalated.  And I felt like I can't breathe.
     Perhaps it is good that we are at this point in our lives with Jarrad's paraplegia.  It is a time of sleep, quiet, death if you will, but this is also a time to plant bulbs so that in the spring, you see beauty from a dried up bulb. My faith feels as small as a mustard seed" (Matt. 17:20) right now.  I know that much can come from seeds even smaller. 

and their new "baby"

     I usually connect new experiences to old.  This is how I understand "new" ideas.  At one point, somewhere, I said that paraplegia is like a new baby.  It is.  We are getting used to the "new us".  But unlike a new baby, this sucks. (well, ok, babies suck but in the good "I am getting nutrition" way and not the "this is very hard and we hate all the changes we have to make" way which is the way I mean when I say this sucks).   So here is Paraplegia 101 for everyone.
     1.  We are on a schedule.  Like having kids, everything is on a schedule.  I mean EVERYTHING!   So if we are out, we kind of need to be home no later than 8 pm.  Ideally, we are home at 7.  I have to be home because even though Jarrad is doing great, he still needs assistance with a few things that have to be taken care of.
     2.  Speaking of schedules, let's talk weight shifts.  Sit up in your chair and really feel where your bottom connects to the chair.  When we get uncomfortable, our body tells our head to move because it needs to change position.  Jarrad no longer has that connection with his lower body.  Instead, he has a timer that goes off and he has to "shift" his body so that his bones don't wear a hole through his skin.  And yes, that is what would happen.  Now, lean your chest as far forward to your knees as you can.  Feel how the weight shifts off your tail bone?  That is what Jarrad has to do about every hour.  This prevents the aforementioned hole from occurring.  When he gets stronger, he will be able to push up on his chair and hold his body up but for now, he leans forward for 2 minutes.  DO NOT be alarmed if this happens.  He has not fainted.  It is simply a weight shift.  He can keep talking and no one needs to weight on him to finish.
     I did tell him not to do this in church, however, as I think it would alarms all the parishioners. Instead, he pushes up on his chair and holds it several times for as long as he can  until he reaches 2 minutes.  The first time he did it, I swear a couple of folks in the choir were getting ready to sing Hallelujah as it does look like he is getting ready to get out and walk.  Again, just a weight shift.
    3.  Because everything is on a schedule, sleep is a little sporadic right now.  I am assured that we will adjust.  I hold on to that.  But hey, sleep with kids is always iffy.  
    4.  Spasms - Sometimes, Jarrad's body will shake or he will jerk back in his chair.  This is a spasm.  It is an effort for his lower body to connect with his brain.  The signals travel  but are not received and react because there is no outlet.  It is a bit alarming and can happen at any time.  It also hurts him.  Do not be alarmed.  Just be aware.  
    5.  Don't help unless asked (or unless someone is looking around desperately or cries for help occur).    PLEASE don't just come up and start pushing someone in a chair.  It throws them off.  And while offers of help to get in and out of the car are appreciated, we have a rhythm and unless you know what you are doing, you would just throw us off.   Help by moving out of the way or opening a door as we are coming up.
     6.  Treat us the way you always have.  If you made jokes at our expense, please don't stop.  We certainly won't stop making fun of you!  We are the same folks we always have been.  Don't change something that you do simply because we can't.  If you wrestle with the kids, it isn't going to hurt our feelings if you wrestle with ours just like you have always done.  Jarrad can give them rides.  Yeah, you may have to come to our house more often than we come to yours but less cleaning for you, right?  And if you don't mind helping us bump up a few steps, we can come to yours too. If you don't know, just ask.  There is nothing that you could ask that would be weird or insensitive.
      Some things will change.  Maybe we won't always have to be home around 7 every night.  And Jarrad will learn to drive and how to adapt his brewery.  He will learn to get on the floor and how to bump up steps.  Just as we figure something out, it will change because he has.  And maybe, this whole thing will be less "sucky".
    Just do me a favor - no big crises, ok?  Just for another 6- 12 months?