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.