Disney - the plan

     I like to plan.  I like lists.   I like long term goals.  When I was pregnant with Sam, part of our birth strategy (ok, my birth strategy) was to plan a trip for Jarrad and I.  It was something to take my mind off of mourning sickness and the birthing process.  Sam was born in May of 2009.  We went on a cruise in January of 2011.  And I planned on it for then. 
     I am a planner. 
     About a year into our wheeling life, I had a bad day.  This particular bad day involved me mourning the loss of our future.  We had planned to do all these things with our kids - trips, experiences - to give them adventures.  One of which was to take the kids to Walt Disney World.  On this bad day, I was feeling hopeless but Jarrad refused to let me be hopeless and pushed me to plan for our trip.  We figured out a base and we started to plan. 
      The first part of the planning was saving.  Disney is expensive.  Obviously.  We saved for 3 years. I made lists, bookmarked websites, and figured out what we would need to make life comfortable for all of us, in particular, Jarrad. Then, last January, I started to do some serious research. 
       1.  Unless you get great joy out of planning and booking your trip - GET A DISNEY PLANNER!!!  I had all the fun of researching and planning but did not have the stress of getting on the internet at midnight to book restaurants and rides.  I had access to expert advice from a reliable source and up to date information. Danielle was amazing!  I jokingly called her my fairy godmother and she really was.  When I freaked out, she was there to hold my hand.  If we go again, I am booking my trip through her!
       2.  Pinterest is great.  Make sure you check the dates of some of the sites as Disney is constantly changing and what 1 family did a year ago, is not going to be the same this year. 
       3.  Ratings are all well and good but they are not the end all be all.  Decide what is best for your family and enjoy your trip. 
     Those are my general tips and bit of advice.  We were looking at this as a once in a life time trip.  We went and we had fun.  I do have some friends who go back every other year or so.  I don't think that we will do that but I think at least one more trip is in our future!   However, if it isn't, I am ok with that. 

Merry Christmas

     It has been awhile since I posted.  It has been crazy and busy!  But tonight I am sitting and watching the U2 concert live from Paris (except that we recorded it).  We had our Mexican dinner with our favorite family - a tradition is as long as our friendship.  Santa has already visited and filled stockings, placed gifts under the tree and the reindeer have left their harness and the glitter from their hooves on the driveway.   Cookies have been eaten and he has written his note of thanks.  Something that he always does.
     My kids are getting older and the magic is fading.  Next year, they might not believe but for now, we will spread the reindeer food, put out cookies and be amazed that we slept through all of it.
      I keep the tree lights on all night.  It makes it hard to sleep since the tree is right outside our room or maybe it is hard to sleep because instead sugarplums, I see lists and and did I do questions dancing in my head.  But I remember the soft glow of the tree from my childhood so the lights stay on.

We are a Star Wars family

     Now it is Christmas day.  Our day doesn't start with a frenzy of opening gifts - we have to get Daddy ready.  But the kids check to see if the cookies are gone and the reindeer enjoyed their treats.  Then we open stockings - a tradition from Jarrad's childhood.  Breakfast next.  My kids are as patient as possible as Jarrad finished up all the things that need to be taken care of for him to get out of bed.  That is a 2 hour process.  I miss the ability to jump out of bed but it does teach patience and I think the kids are better for it.
      We had a scavenger hunt put together by my folks that had us looking all over the house and shown a glaring light on my cleaning schedule (non existent) since I didn't find their clues!  All the gifts are open and Sam has already put together one Lego set (of 3).  Emma has started one of her books and put in a new set of earrings.  And I get to read!  Pretty much all day!  Jarrad has a new game to play and music to listen to.  Later, we will eat steak and have a desert buffet with friends.  
      Peace and joy are sometimes hard to find as adults.  I think we find it in these moments of magic on Christmas day. 

    

Roller coasters

   

     My emotions have been on a roller coaster for the past 3 weeks.  I met my folks at IKEA for a hand off of children.  They were taking the kids for another fun filled week!  Doing things with my kids that I should be doing.
     Emotional roller coaster #1. I am very glad that my kids have people in their lives that can take them so that they can have these experiences.  But it is hard because these are things that Jarrad and I had always talked about doing.  Ok, so we aren't big on camping and amusement parks but we did talk about doing these things ONCE just for the experience! And sure, there are things that we can still do but . . . Honestly, unless you are in this life, you won't understand and for me to explain it would be a enough for a couple of posts.  It may seem like a cop out to say that but I refer you to my statement that unless you are in this life, you won't get it.  You just won't.  And I love you and I hope you never do.
     So.
    I had been looking forward to walking around the store and seeing all the neat things.  But IKEA on a Saturday is CRAAAZY!   And then I watched all of these couples and young families...Wow.  Just a sucker punch of what should have been.
     Emotional roller coaster #2.  So I pulled a deep breath in and tried to move on - because that is what you have to do.  Not should but have to do; to go into the past is a pathway to crazy town.
    So I went to another version of crazy town and went far into the future!  See, another lady in my support group lost her husband.  Every 3 months or so, one of the wives or girlfriends will post that they are leaving the group because their loved one has died.
    Jarrad hates it because I tend to get a little crazy.   I get on him to update our "in the event of something bad happening" folder.   But this time, I was more introspective.  I contemplated my impending widowhood.
    When you get married, you know in the back of your head the whole death till you part vow.  But no one thinks about what it really means.  At your wedding, it is romantic and sweet - you will be together for the rest of your life!  Awww.  You just don't think about that there will be death; as in, one of you will probably die before the other.  If you do think about death,  you picture Nicholas Sparks' The Notebook.  At least, that is what we did.  But when trauma happens, that idea of parting at death becomes less romantic and more real.
    The reality is that I will be a widow.
    This roller coaster has no silver lining of gratefulness.
    Which brings us to emotional roller coaster #3.
    On Monday, Jarrad was admitted to the hospital for kidney failure.
    He had been feeling off all weekend.  I went to meet my folks to pick up the kids after their fun filled week.  Monday came and he seemed fine if tired.  I went to work.  Usually, we touch base with each other during the day via text.  He told me that the wheel chair guy was there and then sent me a weird text.  So I texted back with "huh?"
   Silence.
   Sometimes, he is on a conference call and it takes a while  for him to reply but after an hour and no response, I called.  I called several times.  Finally, I called a neighbor.  She came over, woke him up and Jarrad called the doctor.  They told him that he needed to be admitted.
     Sidenote:  The wheelchair guy left a note that said, "Mr. W, I couldn't wake you up.  Please sign and send in these papers acknowledging receipt of parts." 
     WHO DOES THAT?
     Fortunately, he was "by definition" in kidney failure.  His creatinine levels were at 2.0.  High normal is 1.3.  Jarrad's levels prior to his taking the vancomycin were 0.7.  He was taken off the vanco and flushed with saline.
    And his levels dropped and he came home.
    Even after you get off a roller coaster, you still have the elevated heart rate, the fight or flight response brought on by fear, and the the whiplash from all the ups and downs.  It takes a while for all of those things to settle.  And the more loops a roller coaster has, the longer it takes.
     I hate roller coasters.

The awkward introduction

     It has been over three years since Jarrad was paralyzed.  Most folks who know us - know our story but there are always new comers to our lives who don't.  It makes for some awkward moments.  I mean, how do you bring it up to new coworkers that your husband is paralyzed?  How do you explain the answer to an innocent questions like -  Have you gone/been?  Do you? Why don't you? I could say yes (or no), but then there are the follow ups to that response and another question and, well, the list goes on.  My husband is paralyzed doesn't naturally come up in conversation. 
     Most folks take it in stride  - after you see it register on them.  It is actually quite interesting as you can see the thoughts being processed. Sometimes, that is all there is but eventually, there are questions.  I never mind answering them.  I was, am (?) a teacher.  I believe in answering inquiry.
    And eventually, the comments come about how brave, strong, devoted, fill-in-the-blank-compliment I am.  I say thank you and then I have always answered, I love him.
    The answer is so simple.  I love him.  The end.  That is all I need; that we need to handle all of the complications that come along with wheels.  
    But as I thought about my answer, I realized that I was wrong.  I did not come to this conclusion on my own.  I belong to a fabulous online support group.  It is an amazing group of women who all have men who are wheelers.  And as I read the various threads, it dawned on me that it doesn't matter how much I love Jarrad.  I could love him with all of my heart but if he didn't love me; if he didn't try as hard as he could, my love wouldn't be enough for our family.
    A marriage is not about one person carrying the other it is about working together.  I tried it.  For a measly 2 months, I tried to be enough.  It broke me.  I couldn't be like some women who try for years and years - I am a pansy!  It is exhausting trying to be more than enough for everyone.  And when I told Jarrad I couldn't do it, he stepped up because that is what you do when you love someone.  He loves me as much as I love him; otherwise we couldn't do this. "This" is hard enough.  "This" is extra expense, extra time, extra pain, extra patience, extra grief, extra disappointment. 
     We still fight, we still have "I don't like you very much right now" moments.  He is still (at times) a jerk but then so am I.   But he is here for me and the kids.  He is involved. 
     Yes, I love him so I am staying but he loves me so that I can stay and love him and not resent "this".

Travel

    We just got back from a trip north.  We went to celebrate my grandparent's 65th wedding anniversary.  It was nice to see them and my favorite part was when everyone else went to the park and Jarrad and I had my grandparents ALL TO OURSELVES!  
    My grandfather looked at me and said, "She (gesturing to my grandma) don't walk so good."
    I pointed to Jarrad and said, "That's ok.  He doesn't either."  He laughed and we sat there and chatted.  And it was so nice. 
    For Jarrad and I to reach 65 years, I will have to make it to 93 and he will need to get to 95.  Such a long way away.  11 years seems long so I can't imagine an additional 54!  It is hard enough to look in the mirror and see multiple grey hairs and wonder who that person is inside my mirror.

    Folks ask if we were looking forward to this trip and the short answer is no.  No, we were not.  And it had nothing to do with the people.  Love the people.  Wish we were closer to the people.  The travel is killer.  That and we stayed in 3 different hotels.  Hampton, Comfort and back to the Hampton.  It was a lot of travel and moving and shifting and logistics.  I thought I was organized and had figured things out for travel but...
    I pack our clothes in plastic totes and have bags for all the other stuff - this is the toiletry bag, this is the cath bag, this is the medicine bag.  But with all the switching and moving stuff just got tossed here and there and I got frustrated because I couldn't find the things I needed. 
   I have got to figure out how to stream line this whole process of packing so that we can enjoy our trips and I don't throw pieces of the shower bench across the room. I have a friend who is super organized and I have gotten some tips from her but as with most things, you have to figure out what works for your family and what your needs are.
    So what did I learn other than 50 years is doable but 65 might be a bit much? 
    1.  When the kids are gone for a week, if you clean their rooms right away, they stay clean for a whole week!  And that means half the house stays clean!
    2. Take an air mattress for said children and then you don't have to worry about getting a room with 2 double beds - they can sleep on the floor and you don't have to feel like you are falling out of the bed or worry that there will be enough room for Wheels. 
    3. Stay at the same hotel with your family because it is nice to be able to hang out with them.
    4.  Pop up hampers with trash bag liners and binder clips to make sure the trash bag stays up are a GREAT alternative to those dinky little trash can in hotels - especially when you make a lot of trash.  And they fold so small! 
   5.  Pop up hampers for dirty clothes need to have a draw string aspect to it. 
   6.  I need a better solution to a cosmetic bag than the one we currently use.  It is a Land's End family one and it sucks.  Thinking it might work better as an electronics bag. 
   7.  We are determined to take some "real" (as in being a tourist somewhere) vacations.  I think efficient  packing is essential to comfort and enjoying yourself.  And yes, I may just be a little bit OCD about this. 

Spoiled

     Jarrad says that I have 2 types of PMS:  Weepy and cranky and weepy and lovey.   Want to guess which type he prefers?  Fortunately, we are weepy and lovey today. 
    So - today, on this beautiful day - I dropped the kids off at school.  It was a good morning.  Could have been better if I had slept but there was no yelling about teeth or getting dressed or eating breakfast.  I made a hot breakfast (!) and we even had enough time to play an (educational) computer game. Wonderful.
     And as I watched them exit the car and run into the building, I couldn't help but think how blessed I am and how quickly time goes.
    Everyone tells you to "enjoy the time because it goes by so fast".  Yep.  It does.
    Don't worry about a clean house because they are going to grow up so fast.  But they still need clean clothes and I need to function in said house.
    They are only little once so don't sweat the small stuff.  Um, have YOU ever stepped on a lego in the the middle of the night?
    Enjoying this time isn't about letting your house go to pot, it is about taking a moment, a snapshot, and holding it forever.  5 minutes to play and remember because out of 24 hours, those 5 minutes are going to be the ones that you all remember.
    So, I am going to make them make their beds every morning.  I don't require it to be perfect but I do want the covers up and pillows and the 20 stuffed animals on their beds.  And I am going to make them have (at least) a "daddy sized" path from  their bed to the door.   They are going to put away dishes every night. And I am going to freak out when there are socks all over the floor or when someone leaves his underwear in the bathroom and his sister yells that it is gross (DUDE! There is a hamper!)
   And I am going to go to dance recitals - both on a stage and at home - and basketball games (because NOW we miss it) and as many field trips as I can.

The impact of dates.

     Yesterday, It was 3 years.  We were doing ok.  We knew it was coming but we were ok.  Much more than last year.  Sure, I had some fits but I tried to remember not to rewind the tape and move forward.
     And then we woke up on the 19th. 
    Jarrad got snipey with me because I kept asking what he was thinking about.   He then apologized and we reminded each other that we were a team. We went through the day. 
    But it is amazing how little things can be such a gut punch.
    He gave me a hug and I burst into tears.  And no, people, I am not PMSing.  I started to cry because he was still here to hug me.  I looked at the clock and saw it was 2:30.  Cried.  Went to work and had a coworker ask me how I was - cried.  Each time I looked at the clock, my thoughts went to 3 years ago: Oh, the doctors are prepping Jarrad.  Oh.  I a need to go to 2nd floor surgery.  Oh. The longer Jarrad was is in surgery, the better because it means that they are able to "fix" things.  And I remember everything - all of the numbing emotions, the surrealness. The inability to comprehend what was being said.
    I don't want this date to have that kind of power.
    I am hoping with time that it will stop.  
    I can talk about making conscious choices and looking at the facts as opposed to emotions all I want but the truth is that sometimes it doesn't matter at all.  Sometimes, emotions are there and you have to ride them out.