Our bedroom . . .

     Let's start the tour with the center of a bedroom - the bed.  We used to have a queen sized bed.  Then one day when I was stretching Jarrad, I put my hand on the foot board and heard a crack as it split from the frame.  Fun.  On a separate day but still stretching Jarrad, I heard the frame making ominous sounds so to buy a bed we went.  We got a king TempurPedic. Before "IT" happened, we had been talking about getting a new mattress set and up grading to a king.  The kids had been getting in bed with us and it was getting crowded.  We decided on the TempurPedic because it is very comfortable and also because the head and foot raise.  When we were in rehab, they STRONGLY recommended a hospital bed.  Probably because it can raise up (we did not, however, buy the TempurPedic frame but a cheaper version that had just as good reviews).  Now we have that ability and can sleep together.  Jarrad does not use the air mattress pad that we have and he has not had any pressure sores.  We bought the bed frame at an unfinished wood store and stained it ourselves.  Having a ramp and a dolly made it easy to bring everything in and a friend helped put the mirror on the dresser.  Jarrad has a small bed rail on his side of the bed that we bought from Wal-Mart.com on the advice of his home PT.  It has pockets on both sides to put stuff in and I velcroed it to the box spring.  I took a velcro wrap and attached the bed remote and his phone charger to the handle.  He refuses to use the bed to "sit up" but rather as support.  He doesn't want to get "lazy".  This bed has become a "couch" for us and we watched our Christmas Day movie in it. 

His side of the bed - Hmm, bedside stand.  The drawer is great because it pulls out and gives extra space.  I am looking for a different lamp.  Maybe one with a pull cord but haven't found anything that we like yet.  We have thought of getting wall sconces but haven't been seriously looking yet.  That is probably next on the list.  Cath cart, sliding board on the cube book shelf that holds stuff like meds.   The carpet was in the living room and we went looking for a carpet to put in the bed room for transfers (wood floor + pressure - traction=slipping chair).  Instead of finding one for the bedroom, we found a new one for the living room! 

I attached hooks to the side of his bedside table to hang his wrist splints and gripper on.  The gripper is awesome.  Because of his HO, he can't bend his hips so he uses that to help with his shoes.  He can also use it to grab his chair when it gets pushed into the corner. 
   He has a head lamp for when he needs to cath in the middle of the night.  Doesn't shine as bright and makes it easier for him to fall back to sleep. 
    I am sure that as he gets stronger, some of this stuff is going to not be needed but for right now, it is convenient for us.    I found a wooden tissue box for disposable gloves and he throws his wheeling gloves into a basket on the bookcase.  Ok, I throw them there.  And he is grateful because he always knows where they are!
   We never had a TV in our room before but when we first got home, he would get really tired around 7 or 8 and our room became our new living room.  We would hang out and watch TV.  For us, it was a really smart move and the kids love cuddling on the bed and watching movies.

   We did buy a bed (?) table kind of like they have in hospitals.  We thought it would be a good idea when we first got home so that Jarrad could stretch out on the bed but still have a "desk" if he needed one.  This is one of the things that I think will be the first to go.  Right now, it is there if we need it. 
    When we got the new bed, we also got new dressers - the other ones were the old fashioned kind with no sliders so were really hard to pull out and they were tall.  Now Jarrad can access the drawers and use the top of it.  They came with wooden pulls but we got different hardware  and used the wooden pulls as "hooks".  I drilled a hole in the side and put the hooks in so now he can hang his work bag up off the floor.  Easier to access! Not to mention, I loved the idea for hanging bags and what not that I put them on my dresser too.
    I have a love affair with Command hooks and use them EVERYWHERE!  So there are hooks on the back of the bedroom door for Jarrad to hang his clothes.  
   I need to touch up paint and do something about that snaking cord as well as find a solution to our bedside lamp issue.  It is just to high for him to reach while laying prone. 
   Hmmmm, what else?  We stuck to the mission style bed frame (the TempurPedic beds don't really need a frame) because he uses the slates as a ladder to help roll.  The frame sits around the bed.  Oh, and if you decide to get a TempurPedic and are in a chair, ask for the glide legs, otherwise the bed is about 6 inches higher than your chair.  The glides make it about level. 
   And that concludes the tour of  our bedroom.  I think I did a pretty good job but am open to (reasonable) suggestions! 

fear

   This morning I got up with the purpose of cleaning my bedroom and taking pictures so that I could post an "organizing our paralyzed life" entry.  Then I had to leave for Sam's pictures - 4 years!  We went to the complex (?) Jarrad works at - one of those office/Target/Mall/Movie/everything else places.  After pictures, we met him for lunch.
    He had not had a good morning.
    Sometimes, fear gets in the way of living.  Earlier this week he had some stupid crap dumped on him that shouldn't even have been shared (in addition to the whole 1 year thing) and it is effecting our whole week.  Guys aren't supposed to have fears or express anxiety.  But we know that they do and I know my guy.  We talked and if it hadn't been for the stupid crap, his morning would have been ok - but you know the saying about the straw and a camel. 
    I am going to talk about my fears which sometimes mirror his so I guess they are our fears but I am going to speak about my emotions; my fears.  Sometimes, my fear grows because of little things and the way I "hear" things.  For example, Jarrad was talking to someone and they were talking about the "culture training" at work and how there might be a large turnover.  Keep in mind that the original company was bought about 3 years ago and it is quite large so I hear turnover and think "lay offs".  It sends my heart racing.  Apparently, though, I am the only one who thinks that.  Most folks think  "look for a new job because we don't like the changes".  And really, who is going to fire the paraplegic?  Not happening.  It takes FOREVER to fire incompetent people so I don't have to worry about Jarrad being fired for that reason (he is very competent) and again, really, who is going to "lay off" the paraplegic? 
    But I have my fears.  Irrational, selfish and realistic fears. 
    Selfish because I sometimes feel trapped; feel that we are both trapped.
    I fear for Jarrad.  I fear for him physically, mentally, emotionally.
    I fear going back to the hospital.  I fear every doctor's visit.  I fear when I leave him that something is going to happen.  I fear that there will be a fire or some crazy will detonate a bomb and he will not be able to get out.  Somewhat crazy, I know.  And you want to know something else dumb?  A friend's husband has started working security at the complex so I am not as scared of a fire at work anymore - it is crazy because it is a big complex and his first thought is going to be Jarrad, right?  But it just makes me feel better.  Dumb. So now I fear that there will be a fire in our house and he won't get out!  See, I make a whole lot of sense! 
    I have financial fears.  I joke that we are going to die in debt but that is not what I want.  I worry about college for the kids when really, they will probably get a whole bunch of grants and scholarships.   
    I have fears about old age and how I am going to take care of him when I am 80.  I fear that he is going to have to go to a home and I can't go with him.
    I fear he is going to die and leave me.
    I don't think that I will "get over" my fears.  You never "get over" something.  You learn to live with it.  So the fears live in a corner of my mind and when they trot out, I send them back.  It might take a while but they go back. And if they become reality, I will deal with them. 
    I have found though, that the fear that SOMETHING will happen when I am not with Jarrad is getting smaller. As he gets stronger, the fear gets smaller. Maybe there is hope - they will always be there but be less.  It helps me to breathe a bit easier. 

and we are through to #2

Where we started

    I can't help but wonder if maybe my emotions made this anniversary date bigger than what it really is.  It is just a date; a one year marker.  What is in a date?  Who controls the emotions associated with it?  Me.  I do.  So why can't I turn it off?  The emotions  - not time.
    I remember saying last year, that I just wanted to get to next year.  And now we are in "next year" and I am looking back at last year.  Does anyone else think that this is nuts?  I asked a few people if I was making a bigger deal out of this than should be? (SOME people claim I have drama queen tendencies.  Really, I don't understand it - I AM the most level headed person I knooowww.)  They seemed to think that I was normal - ok, well, you KNOW what I mean.
   I know that that technically today is the one year date.  I even spared a few moments to do the "last year" thing.
    And nothing.  Enter sigh of relief.  No emotions.
    Blessedness.

My superman and one in training

    Yesterday, we had a few people we love and trust over. Jarrad grilled and hung out with friends.  We were safe.  I "may" have been a little spastic - too bright and overly chatty; bouncing around and having trouble sitting still.  Only one (maybe two) episodes of tears quickly blinked away. 
    Yesterday, felt more like the one year date.  Maybe because it was Saturday and Saturday was "the day" but it helped to wake up this morning and feel like we were past that dreadful date.
  
   Now I get to have completely normal weepy episodes!

 

last year

     In a few days, we will reach our 1 year anniversary.  Right now, I am saying "last year at this time . . . " and on Sunday, I will be watching the clock and remembering what happened  "last year at this time". 
   At 2:00, I will be remembering adjusting the ladder.  Hearing my neighbor's shout and running to see.  Listening to him say call 911 and thinking why?  Just get up and I will take you in the car.  Waiting forever for the ambulance to arrive.
   So this year, I mourn the changes wrought by last year.  
   I don't want to be that person who only talks about "it".  I don't want these emotions; these memories.  I just want to get through this weekend.  To get beyond this year.  Next year, next year I won't have last year to remember. 
    Today, this was how I coped.  I gardened.  It is ironic that I do because as a kid, I hated it - according to my parents.  Actually, what I hated was the weeding.  All I remember doing is weeding - not the fun stuff of picking out the flowers and planting them.  So they are amazed when they see my flower beds.  My coping was to go and take pictures of the past 9 years of hard work and share it.  But when I stopped to take a picture of the blueberries, I was struck by all the potential, right there by the ramp.  Such a large sign that our world changed.  And there growing in huge amounts was potential. 
    A garden - so full of life and potential - can change a perspective.  And if it helps me to just get through this day, this part of "last year at this time".  I will take it. 

 

and I was doing so well . . .

   I hate doctor's visits.  They tend to throw the whole week off - we get out of a rhythm and it is hard to get back into it.  This week we had 2!  Jarrad went to see a pain specialist on Wednesday.  He had to wait an hour while the guy had lunch.  I was proud of him for saying something to the doctor who replied that he had to eat to function - to which Jarrad said so did he.  My idea is not not schedule an appointment at 12:30!  Anyway, the good news is Jarrad is going to try a new med that will (hopefully) target his pain better AND allow him to get off of 3 pills.  Can anyone explain to me why WHY why he feels pain in his legs?  Please?
    Then today, he had a surgical pre-op for his carpel tunnel surgery in June.  He got there at 10:07 with a 10:30 appointment - was whisked in and out by 10:35.  I barely had time to run my errands at Target.
    In any case, I have not followed my routine and feel out of sorts.
    To add the cherry to the sundae, Jarrad's break is broken.  Hello safety hazard!  It has been breaking on and off and now it broke and we can't find one of the 4 pieces to fix it.  YEAH!  And the stupid company is taking their sweet time getting back to us.
   So I am tired and weepy.
   This just sucks!  
    Jarrad and I are calling this "break through depression".  It is hard to get motivated to do something when I feel like this.  Last time, I crafted a gift for a friend.  I think I am going to go garden - maybe a sense of accomplishment will help . . .
   I hate feeling this way. 

Another Birthday

   Dear Sam,

Wishing that Thomas would be his brother (sleepovers EVERY night!)

    Today, you are 4.  While sometimes I despair that you will never learn to use a fork, I would not trade you for the world.  I love your craziness with all my heart.  I love it because you will snuggle with me.  I love it because you insist on kissing my nose good night (weird but loveable) and I remember these things when you are throwing a royal fit or when you are up on stage in church NOT singing the song . . .
    I love your ingenuity and your confidence.  I love your compassion.  I love your bravery.  This year was hard and you had your moments but you adapted.  And when you heard me crying, you put your arms around me and cried too. Even brave boys can be scared once in a while.  And you are brave.  You touch snakes and worms.  You try new foods.  You make new friends. 
    I love the fact that you stand up for the ones that you care for.  I remember when I was acting out the part of the "mean teacher", you thought I was yelling at a friend and rushed to her rescue.  Maybe someday you will learn to not just offer protection from others but also from yourself.  It really isn't nice to bonk Emma on the head.
   I love your logic - "Sam, you can't have any cake until you eat 3 pieces of chicken."
   "But Mommy!  It's my BIRTHDAY!"
   Yes, my son - my sweet, weird, loveable boy.  It is your birthday.  Have a big piece of cake. 
   Happy Birthday!
                                                  Love,
                                                  Mom

Loving his birthday present!

Finally . . .

    Tick tock  . . . tick tock.
    May 19th is creeping closer and closer.  I really thought I would be more of a basket case.  But I am doing ok.  Tuesday was bad.  Crazy panic attacks over random weird stuff - like forgetting to put a note in Emma's backpack about getting dropped off at a friend's house after school.  I sat in the parking lot of the grocery store and panicked.  Silly, because I could just drop off a note at the school - I probably could have even called.  Probably triggered by the fact that Voc Rehab funds have run out and we have to pay out of pocket for transportation.  After I got through Tuesday, however, things got eerily calm.  I wonder if it is the eye of the storm.  I hope not; I don't like my crazy self. 
    I hope that I will be ok.  I think so. It helps to have examples.  People who know on an intimate level what you are going through.  In our case, other paraplegics. 
    We went to a hand cycle clinic we on Friday.  We went to one in the fall but I think we still had that spooked rabbit aura about us so we didn't get anything from it.  Jarrad didn't even try to ride the bike.  So when he wanted to go to another one, I was ambivalent.  It's not like we made any connections at the first one.
    But, when you are married, sometimes you do things just because you love the other person. 
    And I am glad I went.
    There were a lot more people there and the lead therapist said that there were a lot of new faces so she had everyone introduce themselves.  Of course, half way through the maintenance truck pulls up to empty the trash.  That's ok; I really didn't care to know the names of the OT or PT  students. 
    Everyone else just seemed so much more friendly or maybe I was just less scared.  All about perspective, right?  We met folks.  Talked with folks about chairs and this and that - like if it got easier after the first year.   
   And Jarrad was the first to try the bike.

 

    Who knows how I will feel next week. For right now, I am proud of my husband and I feel ok. 

Welcome Monday Part II

   So . . .  after my post and some one - up comments (THAT'S messy? Ha! ....) and 2 Cokes and a large coffee (WHEEEE), I did my clean up. 
    When I was a new mom, another new mom friend gave me a copy of a MOPS book.  It was great.  Small chunks that I could read in the bathroom because you all know that that is the only "alone" time a new mom gets and that lasts only as long as it takes the kid to learn to crawl.  It was all about the home - how to live in your small space which was so large before the kids came and how to handle housework.  There wasn't one idea either but it showed different ideas.  I found some that I liked and it has become part of my routine. 
1.  Have one chore that you do each day.  When you finish that chore, even if you didn't get ANYTHING else done, you will feel like you did SOMETHING.  For me, it worked.  On Mondays, I do laundry.  Today, is Monday so my laundry is in the living room and I have a system that some may think is complicated but it works for me so I don't care. 
2.  Go to bed with a clean kitchen.  I may leave the dishes in the dishwasher all night but it looks clean.  And you know what?  I feel like the rest of the house is clean! 
3.  The 15 minute sprint clean.  Each room gets 15 minutes where you put away odds and ends.  Since I have an open house plan, I have divided the open part in to sections so by my calculations that is 3 bedrooms, 2 baths, a dinning room, kitchen, "library", living room, and laundry room for a total of 10 rooms which equals out to 2 1/2 hours of cleaning.  Since I don't ever have 2 1/2 hours to clean, I bite it off in chunks and usually combine rooms.  For example, the bathrooms are lumped together.  Does this happen every day?  I wish.  I really wish. 
    All that to say, in 90 minutes, this is what I did.  It looks a little better.
   Beds are made, odds and ends are put away and dishes are being washed in dishwasher.  No dusting or sweeping but hey, you aren't here to run your finger over the base boards.  And this is a way for me to hold my ground. 
    Now I better go get my chore for the day done and fold some laundry!  I hope you enjoyed the "tour" of my house!  Love you all!

Welcome Monday

   Last night, I got about 4 hours of sleep.  Why?  Weeelll, I stayed up till 10 to watch Gypsy Wedding - love that trashy show!  And by the time I got to bed, it was 11 and then Jarrad was up at 12 and then he woke up again at 5 and I couldn't go back to sleep.  So, roughly 4 hours.  Get up, take Emma to school and go to Home Depot to get MORE deck paint.  And stop by Krispie Kreme for dougnuts.  Back home to wander around saying to myself - I need to clean.  Tired and can't focus much.
   So when I get a text from a friend to come over because she needs some reinforcements in one of her battles of the ongoing Mommy War, I say I'll be right over.
    One of the battles in Mommy Wars is the state of our houses.  They are never clean enough to our satisfaction.  Only one person (in my opinion) has a "walk in ready" house and he is a dad.  Now, what does that say about us, Ladies???  Anyway, I told her after she was apologizing  for the state of her house that I was going to take pictures of my own and blog about it so she would feel better.  

     Living room - it is laundry day at our house.

      Emma's room - Yeah . . .

     Blurry - I know but you get the idea  . . .

    Kid's Bathroom -

     I never used to understand why my mom would always bemoan the state of the house while growing up.  To the other 5 of us in the house (dad and 4 kids), we thought the house was clean.  I get it now - it is the little piles and the never ending monotony of the same things over and over.  But what my mom didn't know was that she was not alone.  If only she knew that EVERYONE throws stuff in closets when they know that someone is coming over!  We need to stop trying to win that Mommy War battle until our kids go off to college.  Then we win by default. 
    And if you come over to my house and it appears clean, please do me a favor and don't look in the closets - I like to pretend that I am at least maintaining ground.   

How not to add stress

     The LA Times had an article not too long ago and someone posted it on facebook.  I loved it.  It is a great principle to follow but I would change/add some things.  1.  The significant  other gets their own ring in the circle.  Then parents, siblings, and adult children (minors get to stay in the inner circle). 
    2.  This needs to be in place for a year (or 2) after the trauma occurs. We as a society do not allow enough time for grief.  I think we need to go back to the Victorian style of grieving - as in 1 year and wearing black (is so desired).  I am so not kidding about this either. 
   Now, before you think I am being insensitive to siblings and parents of adults, let me clarify.  I am in no way saying that the anguish of parents is less than that of a spouse.  It is different.  It is different because as adult children, we have our own household and we have our own stresses that no one else can understand.  
    Not long after THE FALL, I had a friend tell me she was going to do something for me.  Sidenote:  If someone has had a trauma and you are close to the dot in the center of this plan and you want to help - don't offer, just do.  Tell that person that you are going to pick up the kids at 3 and go to the park and then feed them dinner.  That is most helpful.  Being asked what folks could do to help and having to think about what I needed was hard as I was having a hard time thinking at all.  I have been told that this is crisis mode.  That is when you look at what you have to do in the next minute - not the next day or next week.
    Anyway, this friend did something and when I demurred, she looked at me with tears in her eyes and said,
"This just doesn't affect you and Jarrad.  We are your friends and it affects us too so let us help where we can."
    Let me point our some aspects of this statement:  1.  She acknowledged our grief.  2.  She points out her own sadness at this event WITHOUT adding to our stress and making me feel guilty about adding stress to her life.  3. She helped to make my life easier.
    I guess the point of this is, you can feel sad for your friends.  You can grieve for the nuclear family's pain.  It may affect you intimately as you are a part of the EXTENDED family but unless you live in the same house DO NOT PRESUME to add to my stress by indicating in any manner that Jarrad and my trauma is causing trauma of your own.
    I will not allow it.

 To read the article - see link below. 

http://www.latimes.com/news/opinion/commentary/la-oe-0407-silk-ring-theory-20130407,0,2074046.story

Bad Mom

   I am a bad mom.  I don't want to be around my  kids right now - they are annoying! 
   Don't touch.
   Stop whining.
   Yes, you have to clean your room!
   Didn't I just tell you not to touch that?! 
   My sister wonders if they don't know.  Know what month this is.  If they don't understand at some level.  I am sure that they do.  At the very least, they are picking up on the tension. 
   And I am painting this year.  Ironic.  I am painting the deck and ramp.  Last year, after Jarrad "skied" down the ice covered ramp, we decided that we needed more traction.  Thus, to the hardware store I go.  I explain and they give me a product that we will see if it works.  But I need to paint the deck now while the weather is nice aka not 100 degrees.  But it is May and I am painting. 
Hmmmmmm. 
   By the way, I have 2 kids who are looking for a good home. . . we will pay for college.
   Takers? 
   Anyone???
   Yeah, that is what I thought. 

   ****

    (after story time with Daddy and a glass of wine for Mommy)
   Why do they have to be so cute and lovey? 
   Crap. 
   Now I am not annoyed anymore. 

2nd Meeting

    Today, I went to an SCI Caregivers Support Group Meeting.  Have I mentioned that I hate the term "caregiver"? But what else do you call it? 
    Anyway, I went.  Not sure if I get much out of it personally but at least I can be there and maybe I will get something.  The first meeting I went to, I did learn some valuable information.
1.  I was still in crisis mode.  This is indicated by the fact that I lived from day to day and did not plan any further than that.  This is the end of crisis mode and the beginning of survival mode. 
2.  I need to let go and stop doing everything - this moves you out of survival mode to thriving mode (my term). 
3.  Letting him take control of his life means that I get to move back into a wife role instead of a nurse role. 
4.  I  need to take time for myself.  This resulted in my taking a cat nap after lunch on an almost daily basis and not feeling guilty about it. 
5.  Found out a tip that I will not disclose as it might gross some folks out. 
    This meeting I was able to express my anxiety about our 1 year anniversary in 17 days.  I am stressed so PLEASE keep your drama to yourself for the next - oh, let's say the rest of the month.  There were 2 women there who were really in crisis mode.  One was a woman from China - I don't know if she was over here because her son was in an accident or if she lived here now but her son was only 4 weeks from his accident.  Can you imagine?  Her English wasn't very good.  She kept saying that she just wanted to be able to help her son as tears streamed down her face. 
     Another woman's husband and fallen in August - the day we got home and was now a quadriplegic.  She had this hyper-ness about her that seemed to indicate a lack of sleep.  She was overwhelmed and trying so hard not to be.  I wonder if I looked like that? 
    After listening to these 2 women, I feel like I whine.  Jarrad goes to work.  He gets himself dressed 90% of the time.  He transfers himself.  He takes care of his body.  He feeds himself.  Heck - he can turn on the TV AND change the channels by himself. 
    What have I to fret about? 
    My life is easy.