2014 Christmas letter

Watching an LSU football game

      Every year, I send out a Christmas letter and card.  Below is this year's.  I am always mindful of my audience and the fact that I am sending this out - and they really can't avoid it.  So I try to be, um, polite.  And since I am usually tired at the end of a day, sometimes, my filter needs to be filtered again.  So, enjoy the letter with some add-ons (in red) and very little filtering!

Dear Family and Friends,                                                    2014

    Wow!  What a year of ups and downs.  I think that the best way to describe 2014 would be to tell the story of our Christmas card/ family pictures.  Our church was updating its directory.  I was so happy because with me working, I feel like our schedule was tight and was wondering when we would have time!  We arrived at the church and Jarrad was getting out of the van just as Emma tripped (over her shoelaces that I had told her to tie 50 million times!!!) and skinned her nose and forehead- blood everywhere!  I got her cleaned up, the photographer told her he would “erase” the marks, and we bribed her with a movie but EVERY SINGLE picture we took then had tears or a “trying really hard” smile.    Not good.  And then my mom suggested we do something like what you have received.  I think it turned out nice. What I wanted to write was how I walked around the corner of the church where I could kick stones and swear because it had been a really BAD week and this wasn't just a cherry on top but the whip cream and nuts.  I heard Jarrad say, "Mommy isn't mad at you; she just needs a few minutes."  Which brought me back to myself and then I was able to be the caring mom that I should have been.

As the "Frog Prince" for a friend

     That is kind of how this year has gone, not according to the carefully laid plans of these mice but in the end, it all seems to work out.   Like:  The heat pump/AC dying.  Yep, there went 8 months of my pay checks (aka House Fund) but we were able to pay for a new unit and we now have a more efficient unit.  You know, it is not easy trying to find the positive in things.  Being paralyzed costs so much!  Every additional expense hurts sometimes.  I know I should be grateful that I have a job that works with our life and helps to provide for some of these things that we want aka "makes life a bit easier for us" as well as need but there are times . . . I am calling 2014 the “Silver Lining Year”.

Waiting for the van is boring! 

       We FINALLY got Jarrad’s van – the kids dubbed it Max – in August.  We are both very happy with it.  He loves the freedom it provides and I love not driving everywhere.  Jarrad has also taken up a new hobby – wood turning.  He is learning about it now but if he follows his previous patterns, he will be an expert in no time (and he is going to read this and say “Don’t say that.”  But I will.)   He introduced the kids to Star Wars this year.  Emma was ambivalent but Sam loved it which made Jarrad so happy! He has bought some Star Wars Legos and when I take Emma to dance, that is how he and Sam sometimes spend their evenings.  He is just so cute!

     Emma has lost many teeth this year.  She has moved from the little girl combo class to the big girl classes in dance.  Her teacher says that she the most responsible girl in her class and everyone’s friend.  There is no doubt, however, that she is my daughter as she is very dramatic in her dance classes and home.  For her birthday this year, she asked to have her ears pierced.  Since she is responsible, that is what we did.  She was prepared for it to hurt and was very happy that it only pinched a little.  I told her we would change her earrings at Christmas and she is very excited about that. I also told her that we are growing out her bangs this year.  It will be horrific in the mean time but it will be one less thing that I have to worry about - cutting those bangs!

      Samuel started kindergarten this year and has expressed a preference for being called “Sammy”.  I, however, find that I call him Samuel more often than not.  He is enjoying school and making lots of new friends. Getting him to do his school work is increasing my gray hair count.  I know he can do it he just doesn't WANT to!  Argh!  So STUBBORN.  I blame Jarrad.   He is also starting basketball.  We have had one practice and he seems to be having a lot of fun as he is learning how to dribble, pass and shoot.  And it is just plain sad.  I have no idea how these games are going to go but I am already cringing -simply because I don't want him to feel defeat.  Now what does that say about me and what I think of my son?  I think he is 5 and has never learned these skills but still... this is the war that every mom has.  Am I doing the right thing?  Yes, no?  AHHHH!

     In August, I went from being a substitute to a permanent member of the library staff.  I am happy to say that I still love my job.  I also love the consistent hours and increase in pay!  We are all learning to balance work and school and home.  There are some days where I don't think I am going to make it.  Especially when I look around my house and wonder if it will ever be clean.  I don't know how full timers do it. I think you just learn to roll with a new schedule - I did it with babies and with wheels but there comes a time when you wonder when do I sleep?  I am thankful for a great boss, understanding coworkers, a wonderful husband (who can drive) and an after school program that my kids love to go to.   I really do have a great support system.  My boss is very understanding.  My co-workers are amazing people and we get along fairly well - I mean, we are human so there is some tension but they are really cool and are part of why I love my job! The after school program is so great!  The kids love going.  And then there are my friends.  I could go on and on about the awesome people that God has put in my life - yes, my atheistic friends, I think God has put you in my life too and you are a blessing to me so there! They are like family - and I have a really good family!  We are so blessed in this regard! 

      In all of these events, there has been something that caused a bit of panic like child care and hospital visits and would we have enough to cover the heat pump and wondering how things were going to work out but God is good because somehow, things have all fallen into place. I am really learning to take it one step at a time!  I am looking forward to a fresh new year!   Hopefully one with less bumps in it! 

                             Merry Christmas and a Happy New Year! 

the lost post

On parenting
    Today, I went to Sam's preschool for the end of the year parent breakfast.  We get a special picture, an ABC books and get to listen to them sing.     So cute.     At the end, I was helping to clean up and one of my dear friends showed me the picture he...

On parenting

minivandals.blogspot.com

    Today, I went to Sam's preschool for the end of the year parent breakfast.  We get a special picture, an ABC books and get to listen to them sing.     So cute.     At the end, I was helping to clean up and one of my dear ...

So this is why crying is good

      A couple of weeks ago, I took Emma to get her ears pieced.   She was nervous but determined to do it.  She sat on the seat and I watched as emotions crossed her face - excitement, hesitation, fear and determination. Almost, almost, she said she didn't want to do it.  But then, she chased it away.  I watched as the lady shot a hole in my daughter's ear.  I watched as Emma screwed her face up for the anticipated pain that never came.  Her shock as she said, "It didn't hurt!" and her pleased joy at seeing the flowery studs in her ears.
     And I cried.

     I went with Sam on a field trip to the zoo.  As we walked around looking at the animals and I knew where I was going, I was reminded that the last time I had been here was for Sam's birthday - the week before Jarrad fell 16 feet and severed his spinal cord.
      And I didn't cry.
     I could feel it.  I could feel the panic and the water building but I didn't.  It might seem like a small victory but considering all the times when I couldn't stop crying and desperately wanted to, I think that this is huge.
     We recently received our preliminary house plans for the home that we hope to build someday.  You know, that far off mythical time when we can have a house that we can grow old in?  That place that I am building up in my head as paradise?  That place that might never exist when I am at one of my darkest moments?  Now, I have something that I can hold in my hands.  It is tangible.  It is beautiful (not perfect - yet).  It makes it seem so scarily real.
     And I cried.
     Do you know that there are 3 different kinds of tears?  And that emotional tears are made up of different chemicals than reflex tears which are the kind of tears that protect your eyes from smoke?  The more I learn about the body - even in my bits and pieces research- the more I am amazed at its intricacy.
    As adults, we tend to loose that sense of awe about life.  Maybe that is why we have kids - so that we can experience it again.  Where I work, I get to watch teenagers - good kids - be clueless and innocent and it is refreshing.  I see my own kids laugh and giggle in awe over things that no longer have power to enchant me on their own.  So when I get my own bit of wow on my own, it is pretty cool -like finding out about tears.
      And sometimes, it makes me cry. 

So Little time . . .

I am old.

    It is 9:30 at night and I am tired.  But I am rebelling at going to sleep at 9:30.  There is something wrong with that idea.  In my head.  I am an adult and adults stay up till 10 - at least.  I guess I am just like Sam who yawns all the while insisting that he is not tired.
     Jarrad is on his side, "deeply breathing".  He is tired.  He is running a low grade fever.  No, no open or angry wounds this time.  I think it is another UTI.  Oh, the joys of paralysis!  I will take a sample to the doctor tomorrow.  I am actually hopeful that that is what it is because it is an "easy" fix.
      He turned 40 yesterday.
     I have always felt that age was just a number.  That it didn't matter how old a person was.  I have to think sometimes about how old I am.  Too many other important things to remember than a number.
      This feels big though.  Momentous.
     We had a get together with friends at a local restaurant.  His sister came to spend the day with him.  He had 2, yes 2 cakes.  Because of a conversation that went like this:
     Me:  Jarrad, do you want me to get H to make a ginger cake or do you want a carrot cake for your birthday?
    Jarrad:  It's my birthday.
    Me:  I know.
    Jarrad:  I am going to be 40.
    Me:  Yes...
   Jarrad:  Why do I have to choose?
     So, he had 2 cakes.
    And a good time.  We went to a restaurant and had lunch with friends.  It was nice.
    U2's newest album is called Songs of Innocence.  It reminds me of Blake's collection of poems by the same title.  The idea that innocence is a lack of knowledge; the opposite of experience.  Neither is of itself bad or good.  It just is.
     And this just is.
    Listen to me, being morose - ish.  We have cake.  Nothing is ever bad when there is cake.
(so this took me over a week to write and post - it's a little late!)

Mistakes

    Last night, I was at work.  About 1/2 hour before closing, in comes this young adult.  She is a student teacher and needed some help finding books for come classes she is teaching.  I asked if she was on pinterest and she told me she was.  If I had been more aware (and less cocky perhaps), I would have picked up on her attitude.  As I was looking for books on her topics, I asked if she had looked at the teacher textbooks and curricula.  Simply because there is a wealth of information in those things and you don't have to reinvent the wheel - which I didn't know when I was student teaching. 
    Again, I was not paying attention to her cues. 
    And the she gave me the 3rd topic - Substance Abuse for 3rd graders. 
    I looked at her with wide eyes.  And then started looking for books. 
    I asked her if she had asked her co-op how to handle parents who had issue with this. 
    And that was my mistake. 
    I should have just looked for the books and handed her list but there were 2 things going through my head.  1.  I have a 2nd grader and am a parent.  2.  I was a teacher and woefully unprepared to handle parents AND teaching things that I personally had problems teaching at certain age groups. 
    She looked at me and told me that was the curriculum and parents would just have to deal with it. 
    Mistake # 2.  I told her that you can't tell parents that.  To which she replied to just give her the list because I was not being helpful. 
    5 minutes later, she left without any books.  She will never come to the library again.  And I will never be able to apologize. 
    I was wrong.  I should have just looked for the books.  I was not professional and I took it personally. So this is my apology to that student teacher.  I am sorry that I made you feel worse about something you already felt conflicted about.  I am sorry I was conceited.  I am sorry I was not helpful and I am sorry that I turned you off to a great resource. 

Last weekend

      Last weekend, I was at the beach.  Just last weekend.  It seems years have passed in between last weekend and this.  And while I don't miss the bed (WHY do hotels have such crappy mattresses?), I do miss the beach.

    Going to the beach was something my family did.  We went every summer.  Jarrad's family went more to the mountains; he has never been a beach guy.  He only ever went because it made me happy.  So he wasn't too disappointed to be on kid watching duty.
     My mom and my sister were coming (happy Mother's Day Mom) but I beat them there by a couple of hours.  The room was ready when I got there and I settled in, changed to sandals and went for a walk.
    There was a big celebration festival that weekend and the booths spread down the sidewalk for as far as I could see.  The sand was soft and warm and there was a gentle, salt kissed breeze as I walked into the water. 
    And breathed.
    The weekend consisted of browsing craft venders, seeing sand sculptures, chatting, swimming in the ocean, seeing fireworks and way too much funnel cake.
    It was  relaxing.  It was nice (despite the bed).  I enjoyed it.  Coming home was hard as I had to jump right into Mommy/wife roll . . . that was a bit jarring.

    Sorry, I just took a moment to remember the sand and the waves and the dolphins.
    Yeah, it was a good thing.

Quiet

    I am sitting on a couch that I bought 12 years ago in the soft light that comes from a chilly, rainy day.  The only sounds are my fingers on this keyboard and the rain falling on various bits of wood, glass, metal and plastic.  Oh, and the grandfather clock that my grandfather made just chimed.  But that sound has become so much a part of the background that I don't even hear it anymore.
     Sometimes, you really need to listen to hear the quiet.
    Today was supposed to be a go to work day for Jarrad but he is here.  It seems like when we get weather changes, his body doesn't quite know how to adjust.  He is asleep with body aches and a low grade temperature. I guess breaking most of your body will do that to you.  I don't think we have ever really paid attention to it before - too many other things to worry about.  Is that good or bad?  Good because things are settling enough that we are picking up on these things or bad because this might be a pattern?  Perhaps we can get ahead of it, if this pattern continues to emerge.
    I was annoyed with him earlier.  Why does he have to be ill on "my" day?  A day where he goes to work and the kids are at school?  A day where I can have the TV on to watch all the reality and talk shows I want as I clean as loudly as I want?  When I don't have to worry about being quiet because he is on a conference call?  Or he has that look - deep concentration; don't disturb me or I will lose the solution to the problem look.  Where I can relax and only fix myself a lunch and everything stays clean - no tissues on the desk or floor or dishes here and there. 
    And why now?  I am going away this weekend.  No kids.  No husband.  No shower bench or ramp or catheters or medicine or all the other things that we need to make life easier for the both of us.  I have 1!  ONE bag packed (and a backpack but that holds the magazines that my neighbor gives me so that I can read them on the beach).  I am already feeling guilty about leaving him.  Never mind the fact that for the past 3 weeks, he has gotten the kids fed and in PJ's and bed as well as himself.  Never mind that he can drive and can take care of 95% of his personal needs.  Never mind that we have tried to troubleshoot anything that might go wrong.
    To be honest, I am so scared that something is going to happen and it will be an "if only I was there" type of thing.
    Maybe that is why I turn on the tv when the house is empty.  In the silence, you can really hear the fear that has taken up residence in your life.
    I have come to realize that I am not angry, annoyed, irritated with Jarrad.  I am just afraid.  And he gets to deal with the confusion of my fear.  
     He really loves me. I don't know what I would do without him.  It has been 2 and a half years and still I am afraid that I will lose him.  I had a sweet lady say that she thought I was an amazing woman.
     He is just that amazing of a man. 

It's like this . . .

   After I had Emma, I experienced postpartum. I didn't know it at the time.  It was hard.  It is hard to describe.  Slowly, I came out of it.  I think I would have been better if I had some medication but sometimes, the symptoms are subtle.  But, slowly, it got better.  I had a good husband who did what he could to help.  He brought home a pump.  I cried.  It was better than roses or caramels (prefer them to chocolate). He encouraged me to get out. He kept her and got up with her.  And it got better.
    I remember the first time I left them alone.  I went to the library.  Keep in mind that it is only a 10 minute drive from our house.  I think I was gone for a total of 30 minutes.  I was so nervous.  I was jittery.  I got a book and came home.
    But I remember the feelings.  I remember the anxiety and nervousness.  The something catastrophic is going to happen feeling.
    But I went anyway because I knew I had to for all 3 of us.
    Jarrad has been driving for 3 weeks.  He has gone to work, movies with friends and a business type dinner thing.
    He has had some issues.  He parked too close to the line and someone else parked on the hash tags.  Fortunately, he was with a friend who was able to move the van back and he could get out.  We talked about what to do if he was alone and that happened.  Note - asking a complete stranger to move his vehicle is not what we are going to do.  Asking an employee of the establishment or asking for the owner of the car to come move his or her vehicle are more viable options.
    He lost his sliding board but someone was able to help him.  He also lost his balance a bit but he is getting better at transfers.
    But the feelings are there again - the no breathing, nervous, "how can I leave my baby???" feelings.  
    Last week, I took the kids to school before he was safely in the drivers seat.  I only breathed normally when I passed him on my way back into the neighborhood.
    He needed to pick up the kids from after school.  He needed to leave by 4:30.  I stopped breathing until he texted me and said that they were home safe.  I saw that I had missed a call and had a few seconds of panic until I saw that it was my mom who had called.
    The second day of him driving to work, he got busy and forgot to text.  Didn't breathe until he answered my own "Hi Honey, I hope you have a good day" and by the way, could you please text me NOW?!? text.
   I need a few weeks of him driving.  I know he is fine.  It is just me.  It is just my fear.  I need to get used to this new normal.  And I know that I will.
    I gradually lost the postpartum anxiety.  I learned to breathe.  I met other moms and lost the fear.
    Already, I don't worry so much when Jarrad drives to and from work.  He has done it enough by now that I know he will be ok.  We will be ok.
    And the more he drives other places, new places, the more I will be able to breathe. 

drum roll please (and it isn't even Christmas)....

     We have the van!  Yes, Max is home and Jarrad is driving.  In fact, he went to work today.  And no, I didn't follow him to work- even though I was tempted to!  It is not the first time that he drove to work.  He has driven that way before.  Driver Rehab let him set the routes and so he drove to places that he would frequent.  Today, work.  Tomorrow, movies with friends.  I don't know where else he is going to go but I told him to have fun this weekend!
    So let me introduce you to the newest, and very vital member of our family!

The driver's chair swivels so that he can transfer into it after he rolls up into the van.  The chest strap goes on his chest as an added safety measure. The remote turns the chair.  The chair goes up and down, back and forward and left and right. 

The stick shift looking thing controls the gas and break.  It is Jarrad's hand control. If you look closely to wear the foot pedals are, you can see a cover.  This is to prevent Jarrad having a minor spasm that causes his foot to accidentally hit the foot pedals.  The cover comes off and I can use the foot pedals to drive.  I am not licensed to use the hand controls nor would I want to.  There is also a foot rest that goes in so that it is easier for me to use the pedals - they thought of everything!  Jarrad has a turn knob on the steering wheel that clips in and out.  If I want to drive, it is very easy to take those 2 things off.  I just need to not be startled when the the hand controls move with the pedals! 

Transfer to driver's seat.

Adjusting. We have a griper in the van in case he needs to reach for anything.  I have to organize the van so that everything is right where it needs to be.  I will post that when we have figured out things but velcro, 3M and 31 are going to be a part of that!

Off he goes.  He did text me later and say he got there. Although, the sliding board slid off his chair (see why I need to organize?).  Thankfully, a coworker was there and got it for him.
I have been the only driver for 2 and a half years.  Now, my driving strike begins!
 

calender year

 


     I never buy a calender in January.  I always wait for the "academic calenders" to come out.  That is when the year starts for me.  As it always has - first in my own primary education, then college, then in my career.  There are the "lost years" where the days and months all blended together in a sleepless blur.
   And then, I started all whole new era of an academic calender with my kids' education.  They started back to school this week.  Emma went on Monday.  She is an old hand at this school business but still wanted me to walk her in.  She knows her hall, the staff - waved hi to different kids.  She knows what is going on.
    Samuel started on Wednesday.  He told me that I could go through the car pool line; he knew where his class was and could walk in by himself.
    I told him that it wasn't for him but for me.  And he gave me a look and said, "Ok Mommy" in a tone that indicated he knew exactly what I meant.
   Sure enough, he knew right where his classroom was, cubby, and table.  Didn't even pause to give me a hug (I got one anyway) and said a casual "Bye Mom" as I left. 
   Wednesday was a surreal day.
   So quiet.  So still.  So. . . not what I am used to.
   I wonder what I will do in a decade or so when I won't need an academic calender as much as I have in the past. 

The ugly word

     A couple of weeks ago, as I was getting my brood ready for church, there was a knock on the door.  A small boy stood on the porch. Spotless white shirt and a tie just a little too big and just a little crooked.  He looked a me and glanced back at his dad who gave him a nod and asked me if I believed the answers to the universe could be found in philosophy, nature or religion.  I bit back my answer that I did not believe that they were mutually exclusive because I was not going to do that to a 1st grader.  I listened to him finish his speech and took the pamphlet because all it cost me was a few minutes of my time.  And his presence shamed me - just a little.
     I am not overt about my faith.  I like to think that folks know where I stand.  I like to think that I am not seen as a hypocrite - I swear and I have the occasional drink.  I gossip.  I do all the things I shouldn't do.  Despite that, I hope I am not a total failure in the faith department.  I do know that I have been pondering writing this for a long time.
    It is not that I don't want to talk about it: it is that I am afraid that I am going to get it wrong.  That I am going to screw up.
    But fear is a sin.
   No, not fear.  The allowance of fear to take the place of faith.  If I have faith, then God will use my faith and speak through me.  If I have fear, then fear will prohibit me from speaking when I should and thus, I have sinned against my God.
    My dad said that sin is basically knowing what is right and not doing it.  This mind set means that we sin all the time as well as alludes to a knowledge that we all have a knowledge of  what is right.
    Example:  There is a social acceptance that to litter is wrong.  To do so damages the earth that we live in and makes it ugly to look at.  It is in defiance to the idea that we are stewards of this earth. You throw litter out the window = sin.  However, if knowing what is right and not doing the right thing is a sin, then if you walk by litter - not yours - and don't pick it up, that too is a sin.   Because the right thing to do would be to pick it up and throw it away
   This sounds simplistic but it speaks to the heart of Psalm 51:5 - "For I was born a sinner--yes, from the moment my mother conceived me."   Do babies sin?  No.  But that is not the point, the point is that we are not sinless because every day we know the right thing and don't do it.  I would even go so far as to say that we are born knowing what is right but our selfishness and sometimes self preservation prevents us from doing what is right.
    Doubtful?  Have you ever blamed your sibling for what you did?  It happens and young too.  See, even at 3, we know the right thing is to "own up" to what we did BUT self preservation kicks in and we lie EVEN though we know that we will get our sibling in trouble.  We KNOW it is wrong.  Hence, sin. 
   Sin is an ugly word.  No one wants to be a sinner.  We all believe that we are "good people".  We want to be good people.  We want to do the right thing.  Now, keep in mind our definition of sin.  Knowing what is right and not doing it.  Not as ugly?  The "right thing" is to do countless little things but we don't do them because of countless little reasons.  The point is that no matter how we try we will never be sinless or a truly "good person" because even "good people" walk by the litter or don't stop to take the stray kitten to the shelter or whatever.
    Then what is the point then?  Let anarchism  rule!
    The point is to be better.  So you don't pick up the litter today - you do it tomorrow.  But even doing it tomorrow does not take the place of faith.  Faith is the idea that there is something/someone out there that is bigger and more just than self.  Faith says that there is a purpose.  There is a reason to be better.
     I know some say that they want to believe but can't - I guess because there is no evidence.  For me, I can't not believe (I'll discuss evidence later).  The idea of no God is terrifying to me.  Without God, there is no purpose; no reason for being here.  I choose to believe in the specificity of the universe; not the random joining of molecules.
     Do I believe that God had a purpose for Jarrad's paralysis?  No, not really.  I believe that it is the result of an imperfect world - a sinful one.  Purpose is bigger than small, albeit life changing,  incidents.  I have said it before, it is how we handle the imperfect world that is important.  I want my handling of all of it to be worthy of the God I believe in.  That is the purpose of life.  That is the purpose of my faith.  I will not get it right.  I will fail.  But I will do better tomorrow.  And I will stumble the day after that. And the next day, maybe I will catch myself before I fall flat on my face and then, keep going.

an aversion of change

   I don't like change.  It bothers me.  I hate making decisions for a group.  I hate it when my schedule changes.  I hate not knowing.  I hate sudden change.  I hate knowing that change is going to happen and waiting for said change to happen.
    Basically, I hate being a grown up. 
    That aside, in the next 3 weeks our lives are getting ready to change.  All of them.  In the next 3 weeks, Jarrad is going to be driving - knock on wood and his work schedule is going to change.  I am going to be starting a new position at the library - part time, more (regular) hours and a slight raise.  Emma already has a change in her dance night and is in a "big" girl class (no more cute tu-tu's and buckle tap shoes!).  She will be going to after school or (hopefully) karate (if it doesn't cost an arm and a leg).  Sam will be starting school (eep!) and after school or karate and HOMEWORK!!!
    And I am scared.
    I am not sure scared is the right word.  Apprehensive?  See, I don't like this waiting period.  This time where there is still stuff to do to get ready and yet, you can't do it.  I don't know how it is all going to work out and no matter how much deep breathes I take or how much prayer I say, I still grab the tail end of my worry and wrap its noose around my neck.
    How is it going to be for Jarrad to drive?  Is he going to be tired?  What is he going to do at the end of the day when he is at the bottom of that 12 foot ramp and I am not home?  Will he pick the kids up from school on time?  Is his boss going to put more demands on him?  He can't sit in his chair for that long. 
    Emma will be fine but will I see her enough?  Will I be too tired to give her the affection she needs?  She is a cuddler and hugger.  She needs that.  Will she be able to handle the longer and harder homework that comes with 2nd grade?
    Am I failing Sam by working?  Does he need me at home to help him?  He doesn't know all of his letters - simply because he doesn't see the need.  Why should he study letters on a page when there are giggets and gaddegts that if he puts together this way does that?   He has his priorities. 
    Am I making the right decision?   Will I be able to juggle the needs and wants of my family with work?  Just because a door is wide open, does it mean that I should walk through or that I have to? I know all that stuff about worry and what it does and Who I should let have it.  The theory is sound but the practice is hard. 
    Why did I want to grow up? 

Update on Jarrad.

    My skills include:
    1.  Changing sheets while someone is in the bed.
    2.  Knowing how to change a wound vac.
    3.  Being able to flush a PICC Line.
    4.  Knowing how to handle a pressure wound.
    5.  Dressing changes
    6.  Multiple ways for taking care of constipation.
     What my skills do NOT include is a medical degree.  But if we keep going at this rate, I just might be able to pass my boards.  I feel like if it could happen to a spinal cord injury, it has happened to us.
1.  Roughly 60% of wheelchair users get carpel tunnel - guess who had carpel tunnel syndrome?
2.  About 20% of SCI patients have hetertopic ossification. And guess what? Yep.
3.  Osteoporosis and broken bones? That's right!
    Jarrad and I were talking and we came to the conclusion that the initial injury is still ongoing BECAUSE of the complications that come as a result of a spinal cord injury.  That makes it hard to say, ok, we got this now.

A new strap and new glasses

    Recently, we had a scare.  I was looking at his leg and one of his smaller incision spots was red and warm.  Not hot, and it blanched but after the last time, we were just scared.  It was nothing and I did some research and took a course of action AND made a doctor visit.  We were so afraid (paranoid) that the doctor was going to send us back to the hospital.  I don't think that Jarrad would have been able to go through the doors.  It would have been too much.  Fortunately, it was a surface infection and we did the right thing but that weekend was rough.
   Now, he no longer has the top of his right femur.  The shattering of the bone due to the unsuccessful surgery and subsequent infections has caused it to be non existent.  The consequence is that he is sitting crooked in his seat.  He is missing bone, after all in one hip, and has too much in the other.  We have tried to remedy this by putting a wedge under the one hip and "tying" him to his chair to help hold him straight but . . . He still leaning and that puts pressure on his spine.  WHICH contributes to his pain. 
    And there is nothing that I can do about it.

    The more I learn about the human body the more I learn that humanity is pitifully ignorant about the human body. 
     At least it isn't just me!  (Always have to find a positive).
    There is so much to learn and I have learned to be wary of doctors who think that all bodies are alike.  Each body is as unique as the soul that inhabits it.  In fact, I don't think that we should discount the soul in diagnosing the body.  I think it plays a large part in the why some things work for some folks but not for others.  But it is hard to study and hard to put into numbers.  Why, WHY do we persist in the idea of uniformity? 
    Sigh. 

too good to be true

   Remember in my last post when I said we actually had a date?  Remember my sarcastic comment that we might get it by Christmas? Remember when I said I wasn't going to hold my breath?
   So glad I didn't hold my breath!
   Yes.  It just might be Christmas before Jarrad gets to drive.
   Please just laugh with me now because otherwise I just might cry.  And I think that Jarrad is the one who gets to be frustrated and angry about the whole thing.
   Yep.  Apparently, they need more time to complete the modifications.  Modifications that were a part of the original discussion but never made it into the plan probably because of the time lapse issue.
    YEAH!
    Ok.  I know I said I would be patient so I am going to take a deep breath.
   But there is always that straw - you know that tiny little thing that sends the whole pile toppling over.
   Now we won't have the van and we are going to have to pay for a driver for 2 or more weeks.  Now I have to take Jarrad to his doctor appointment on the 20th - not a problem for me but he was kind of excited about doing it himself and I can feel his disappointment.
    But here is the straw.
    Instead of calling him and asking if he was available for the new date - he is kind of the most important person there; everyone else is not really necessary or they can skype in - no, really they could- a mass email was sent out with a fixed date.
    Um, no.
    You don't  ASSUME; you call and check the CLIENT first.  IT IS OUR VAN.  JARRAD will be the one DRIVING IT!  Don't assume that he is available whenever.  
    This is not the first time that we have run across the mentality that because Jarrad is in a chair, he does not need to be consulted about a schedule.  You know, because folks in wheels don't work and because they can get wherever they want at any time.  I am not being too sensitive about this "assumption" either.  I might try to down play it but the assumption is there and I have proof.  How do I know?  Because when the job is mentioned there is an "oh" that happens.
    A loaded "oh". 
    An "oh" that really says, "I didn't know that you were working.  I thought that you were disabled and therefore, you would not be able to hold down a job.  Wow.  My mind is blown with the concept that you work and/or that someone would hire you."
    Yes.  It is not as simple for Jarrad to get to work as he used to.  There are lots of things that have to be taken into account such as how to get to the office.  Everything else is a matter of schedule and tools - a lap desk, a bench to stretch out on (you don't sit for 8 hours straight), a parking spot where he can park, height appropriate tables, wide walkways, oh, and a bathroom stall that he can use (as in don't just use it because you like the bigger stall).  But other than that, he does a great job!  My response to the "oh" is REALLY?
    Wow.  I think I needed to vent.  

The Van - whose name is Max

      The kids named our vans.  Yep, the Mini Vandals named our minivans.  The blue - excuse me - "slate" van is Vanny.  And for some reason the green (cypress pearl) van is named Max.  I think it is because my BFF said it was "Vanny to the max".  The kids liked it and, thus we were named.
      In any case, about 2 weeks ago, "they" came to take the van for it's modifications!  YEAH!   Part of the bid for modifications was that they come and get the van.  The pick up time was between 1 and 4.  Yep, as bad as the cable guy and, just like the stereotypical cable guy,  they came at 5:15.
    BUT they came to get the van!
    Finally!
    On September 30, we went to Van Products for Jarrad's first "fitting".  We spent 2 hours there. He did two transfers, made adjustments on seat height and placement of all of the "things" - latches for chair tie down, accelerator, break, emergency break etc.  The mechanic was awesome - he was willing to take things out and learn to do new things (ie put the chair swivel switch on a remote).  He took lots of notes so that it will be "just right".   
     It has been a long time coming for us.  At least it seems that way.  And it seems like every time we turned around there was another hitch.  But finally, the good news, we actually have a date for the van to be DONE!  And we have a date for Jarrad's final driver training.  It is NOT Christmas!  Although, I am still not holding my breathe that we will get it. . .
     Sigh.
     So why has it taken so long?
     Well, we started the process in the fall of 2012.  Jarrad was supposed to get training that spring but that got delayed due to carpel tunnel surgery.  Then the state made policy changes - YEAH for bureaucracy!   That resulted in more paperwork and the delays that correspond with paper being sent to different places for signatures.
    FINALLY!  We were told that we had a van.  We finished the paperwork, took possession of the van and it came home.  And we enjoyed it.  And waited for more paperwork to be completed.

    The timeline, as it was explained to us, seemed pretty straight forward.  However, it is never that way.  What you need to account for is human nature.  Our engineer had a personal issue - that is understandable - but what isn't is that when we called about it - which we did after 2 weeks of not hearing anything - we were told that no one could get a hold of him.  This was a  trend that continued for a month until finally, another engineer said he would be out to do the evaluation and write up for us.  THEN the original engineer said he would get on it.  That still took 2 weeks.  So we got the van in April (I think) and now it is the very end of July and we (fingers crossed) should have it by the end of August. If the original plan had been followed, we would have had the van last year at this time.  But it was not and we have the van this year.  I will be grateful.  I will be patient and I will celebrate this new addition.
     Just in time for school to start. 

Lazy daze of summer

Last day of school

   Summer is anything but lazy - at least for the adults of this house.  Nope, we are busy, busy, busy.  And just like the fall, summer starts early for me.
     May - Sam turned 5!  My baby is 5.  We had planned to go to the local lake for his birthday.  Perfect!  He loves the water and I don't have to clean.  And then it rained.  Not on the day of his party but for the 2 days before.  Hard.  Our pavilion was under water and in this area, if there is a hard rain, it stirs up "stuff" and they usually close the beach.  So, I was scrambling to set up a party here.  I got sand for our empty sandbox, bubbles and chalk.  Friends brought water guns and one of those card board castles.  And the kids just played.  I didn't need to worry about party games because they would have had fun just running around a being together. Oh, and cake.  Sam doesn't do chocolate so I had a friend (FABULOUS baker) make a lemon cake - who knew that a bunch of 5 year olds would devour a lemon cake - really, nothing left!

    And then on Monday, Jarrad went into the hospital to clear out his infection.  For the past 6 weeks, he has had a PIC line that we (I) have had to flush every morning and feed an antibiotic to every night.  Add another skill to my list.  I tried to get a nurse to show me how to change the line but they just smiled and shook their head.  That would have been a coup!
    June -Then it was the end of school - field day, rewards, end of school party and (snif!) graduation. And then the kids were off to Grammy's house. 
    And I had PLANS! 
   Plans did not include reading 4 books in 4 days- but I did. My plans did include cleaning cleaning cleaning - but I didn't.  And I am ok with that.  I am learning to be ok with plan changes.  I am trying to just be in the moment more.

The little branch where I am for most of the summer.

    Then it was off to pick up the kids.  And back again. 
    Here it is, roughly 4 weeks after the end of school and I feel like we have just started summer.  And I have so much writing to catch up on!
    1.  Update on van (not been taken yet!)
    2.  Update on Jarrad (yeah for SCI complications!)
    3.  Salute to working wives/mothers (I am so tired and my job is PART time)
    4.  Kid vignettes

My boys - wearing their matching shirts. 

    5.  Realizations about life and faith
    6.  The importance of relationships and support
    My head is so full - I hope by getting some of this out, I can clear it a little and organize my brain.  And it will help me organize and enjoy the rest of the summer before it is gone! 

well....

  Huh....  I don't know what I did but my last post disappeared! 
  Huh. 

HOME

   Jarrad is home.  Finally.  I hope that this is the end of hospitalizations for a while.  I know it is not because we have another surgery to go through but I am hopeful that perhaps this one will not be as complicated.  Time for more research!
    So, the reason why we were in the hospital (6 days) for so long is because they needed to find out what kind of bacteria was causing the infection. It was a strep versus a staph infection Jarrad's was a strep infection.  Apparently, this is good as a strep has more antibiotic options. 
    This is where I am (again) grateful for my connections.
    Ok, I am fully aware that the human body is complex.  I am also aware that medical staff do not tell you everything - for various reasons.  They don't want to alarm you.  They assume you know.  They don't know - what ever it is.  So I am grateful that I have folks who are able to fill me in.  For example, one of Sam's friend's moms is a nurse.  She has offered to come over day or night if we need help (not a "fake" offer either - you all know what I am talking about).  She was able to explain that doctors/hospitals want you to stay until they determine what the bacteria is and what it will take to knock it out so that you don't have to come back in.  Now,  maybe Duke assumed that we understood it or thought that someone else had explained it or whatever.  I am not complaining at all about this.   It is a side effect of not being able to always be there with Jarrad and/or not being in the medical profession. I am just grateful that I have folks that I can go to for answers. 
    Home health is coming in tomorrow.  They will teach us to what we need to do for his antibiotics and wound care.  I will add it to the list of skills that I am acquiring and hope to never have to use again. 

undescribable

    There is this feeling when you leave someone you love in the hospital.  It is like you have no tether - no concentration at all.  It is the reason why folks pace.  And then, when you get the all clear, it snaps back into place and you are grounded again.
    I don't like waiting in the hospital for that reason.  I am a pacer.  I would be annoying!  Today, I have been cleaning out the closet, caulking the trim, moving paint to smaller containers, putting together my mending/small sewing projects to work on, weeding and doing laundry.  None of those things were finished - my version of pacing.
    And jumping every time the phone rang.
    Finally, at 3:22, I  got the call I was waiting for.  And I was grounded again.

PICC Line

    They opened the side of his leg and found infection.  It was deep and it did touch the hardware.  This is bad as they had to remove the pin and screws.  The good news is that the pin seems to have acted as a wall and prevented the infection from moving deeper.  It also appears that his femur has fully healed and they do not need to go back and put in another pin - which was a possibility.  They are "very hopeful" that they will not need to.  He did very well with the anesthesiology.  His hemoglobin was low again - 8.9 for my nurse friends which is down from 11 from last December.  I am perplexed and a bit concerned about that but no one else seems to be.  I am going to be more aggressive about this later.  So they did give him a unit of blood but I think that was more preventative than because he really "needed" it.  He will stay in the hospital till they determine the strain of bacteria - probably till the end of the week -and are able to give him the correct antibiotics.  He will have to have a PICC line - similar to the picture and has to have IV antibiotics for 6 weeks.  Home health will be out for that - yeah.  I think that this doctor is not playing around!  We have had Dr. Riley before and she is really good.  I wish that she would be willing to do the bisection of his HO but I understand why that may be more than she is comfortable with.
     Sigh.
    Well, that is it for now.  Don't worry, I will keep you updated! Thank you for your prayers and good thoughts - don't stop!   I really hope that this is not the precedent for year 3.  I just want it to get into a routine!

I got nothing

     May 19th.
     It has been 2 years since life as I knew it changed.  And today, I took Jarrad back to Duke.  He has an infection in his leg.  Probably been hiding since his bisection (heterotopic) surgery last November.  Tomorrow, he will have surgery to remove the infected mass and will then spend the next 4 days in the hospital receiving heavy duty antibiotics.
    I am trying to hold it together.  You know - just the date and the parallels.  How many times are we going to have to do this?  I am so tired of hospitals and complications.
    I have a lot of sympathy for Job.
    I will wait till later to have my cathartic cry.  And then I will play my new theme song.

 

Hey Babe - you need to add this to my power mix!