How do you get rid of a whale?

    Sometimes, you are faced with a situation.  It seems huge and you don't even know where to begin.  Back after our Disney trip (I need to finish that...), we got news that my mother in law was failing.  We had known that she had been diagnosed with a rare disease - Amyloidosis.  What we didn't know was how quickly it would progress.  What we also didn't know was that Jarrad's company was going to sell his division and that there would be changes in how vacation was doled out.  In short, he had to fight and go above his superior's head in order to get the vacation time that he had put in for long before there was even a hint of a buy out. But that also meant that he went "in the hole" for 3 months. Which meant that he had no vacation time to use to go and see his mom.  I am giving you the short version and it was not pretty.  Why do we have to fight for the "privilege" of being with our families?  You ever see that commercial where the kids are asking for one more day?  It isn't that parents don't want to take one more day, it is because they aren't ALLOWED to!
     But, I am getting off topic.  And if I seem frustrated - I am!

     However, because of the buy out, there was restructuring - yeah! - and Jarrad has a new boss.  This one is a bit more compassionate and seems to have common sense.  This one found out what was going on and said that he was ok if Jarrad did his work in the car or after "normal" business hours (and since they have clients on the west coast, well, normal has a broad definition).  Because of that, we were able to traverse 7 states, 32 driving hours and 10 days in order for Jarrad to see his mom and say good bye.  We combined it with a trip for a family reunion on my side since it would save us a whole 2 hours to leave from PA.
     Huh, that means that it was 36 hours of driving...
     We tried to turn it into a road trip of sorts.  We would drive for about 3 or 4 hours, stop at a museum for an hour or 2 and drive a couple of more hours to a hotel.  Jarrad would stretch out, find and order dinner and the kids and I would unpack.  Get up the next morning and repeat.
     We are now Hilton Honors "Blue" Members!  Only 14 more stays and we upgrade to "Silver".
     Whoo hoo! 
     What did we learn?
     1.  That I need to evaluate my packing system that has worked for the past 4 years because the kids are getting older and can help.
     2.  That road trips aren't as bad as I was dreading if they are broken into chunks.
     3.  That I love my bed.
     4.  That people be crazy when they be driving!
     5.  That I miss my bed.
     6.  That there are some really cool places to stop and visit on the way.
     7.  That we are "cool" Auntie and Uncle.
     8.  I really, really love my bed!
     We tried to be upbeat?  adventurous? about the trip.  Hence the stops to sight see.  But the point of the trip was for Jarrad got to spend time with his mom.  It was hard to see her.  She was tiny to begin with and now, she is smaller still.  Hospice has told my sister in law that the body knows how to die.  There is even a pamphlet.  We know about the cycles of grief and that the cycles don't go in order nor do they end.  We have all this knowledge but the reality is something different.  It comes in waves and sometimes, it leaves a whale on the beach. 

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. 

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. 

more travel

    We just completed our 3rd trip.  Since we will be going to PA on a regular basis, I am starting to really look at how to make life easier when we travel.  I know that as the kids get older, we want to take them on trips around the states.  So it is important to me to figure out how to travel.  Based on our travels so far and some really sound advice, I have divided "a good trip" into sections:
1.  Packing
2. A place to stay.
3.  Bowel/bladder
4. kids
   Lists - I am going to type up a master list and check it twice.  I would hate to get caught without meds or catheters.  Jarrad always says we will buy it if we need it but somethings you just can't walk into a Wal- Mart and get (maybe some stuff outside . . . ).  
   We stay at the Hampton Inn in PA. Before IT, we would stay at my folks house but that isn't happening now.   My folks offered to let us sleep in their room but there is no way that Jarrad would be able to use their bathroom.  As it is, when he needs to cath, he goes into their room and I empty the urinal.  Not a big deal.  But I know that he would miss not getting a shower.  If, however,  my vibrant family and adorable nieces and nephew wear him out, he crashes on my folks bed and I keep cuddling babies so that part works.  My dad made a ramp which brought me to tears because I don't have to pack the portable one and well, just the gesture was good to my heart.  My mom went and checked out local hotels for us and the Hampton Inn in Ephrata was the nicest that we could afford. We are now members so we should be getting a free night soon.  It is nice.  The staff are polite, rooms are clean and the breakfast is ok. They have a lift for the pool which makes Jarrad happy.  Not too far from a Wal-Mart, Urgent Care and the rest of the family.  
     Since we go up for several days, I bought a mattress topper to go on top of the bed because it is SUPER soft and you can kind of feel the springs - it is a hotel mattress after all - and I don't want Jarrad to get a pressure sore if a spring rubs him for a couple of hours during the night.  We take his pillow and they have enough extra for me to prop him up.  The bed is higher than ours so we make sure we have a sliding board for him to use.  It also doubles as tray if we need it.  If he just wants to stretch out, he uses the chase that is in the room.  Since all of the hotels are alike, I think we will try to find Hampton's for other trips as well.  We stayed at a Wynngate and that showed us that just because it says it is accessible doesn't mean that it will be accessible when you stuff it full of furniture and then refuse to take it out.  Harumph.
    We do take his shower chair.  I take it apart and put it in a duffel bag but I think that we are going to get a smaller one for travel. 

This is similar to what we have

This is similar to what we might get 

     I have talked to others who say that they don't bother with a chair.  Jarrad likes to have a chair - hence the smaller one.  He likes to shower and I don't always like the looks of the shower "benches" that I have seen.  I also haven't heard good things about the placement of benches at a lot of places. You can see that the bench is pretty low compared to the bench that we use.  And I even made our bench lower than his chair.  Also, see where the grab bar is?  I don't like it being so far forward.  Made me nervous.    What you don't see is the yoga mat that I throw in the duffel bag with the chair.  The curtain is a good 6 inches off the floor and with no curb - water goes everywhere.  The yoga mat gives us some traction. 
   This last trip, I did look around more critically at what we could use to make life easier - such as a caddy to keep things that correspond with bowel and bladder.   I am going to keep my eye out for something that can be "squished" and yet still keeps it form and can be washed.  I would want one for bowel and one for bladder.
    Kids.  Haven't figured out that one yet.  The good thing is that they stay at my folks house and I don't have to wrestle them to bed and keep yelling at them to go to sleep.  Not that I do that a lot now because usually they are worn out (and my parents put them to bed - hehe!) I don't know what we are going to do when we travel other places. Fortunately, I know we would ALL go to bed at their bed time but not all of us would go to sleep because it is just TOO much fun to be in a hotel room.  And the giggles and whispers and the "Mommy, he/she . . . " will make for  a long night.  
    Look, my eye is twitching just thinking about it!
    Any suggestions? 

                                         

thank you Hampton Inn

   When we were discussing going to PA, my parents offered to let us stay in their room which is on the ground floor of their house.  We could have done that but there was no way that Jarrad could have taken a shower (they have just a shower stall).  So my mom put in the time to go to different area hotels and check out the wheelchair accessible rooms.
     You would think that something called a "handicap room" would be able to accommodate a wheelchair - I mean, how much more "handicap" can you get?  But that is not the case.   Not all "accessible" rooms are wheelchair friendly - even if you call ahead and specify "wheelchair friendly" as we found out on our way home from rehab, you might get put into an accessible room that is for the hearing impaired or a clerk will tell you that they can "put up grab bars" which is all well and good IF the chair can get into the bathroom.  Mom went to at least 4 different hotels to check them out.  One was no go - the grab bar thing.  One was ok but kind of dingy.  One was an awesome and beautiful but that was about 200 a night - not happening.  Then there was the Hampton Inn in Ephrata - 12 miles from their house.  But it was booked.  Still, Mom asked to be called if there was a cancellation and since we knew the front desk clerk (my SIL's neice - yeah for family connections), we knew that if there was, we would get a call.
    Sure enough, she called about a week later.  Reasonably priced room and a reasonable distance.  And Mom said she would keep the kids at her house!  YEAH!!!
    Still, before we got the call, I was distressed.  It was still 6 weeks out from our trip which I think was plenty of time but I was having a hard time locating a room for us.  It appears that most hotels only have 3 accessible rooms only 1 of which is a wheelchair room and it goes pretty quick (apparently, to non wheelchair users).  I was not happy as I was calling around Lancaster County aka tourist country trying to find a room that we could use.
    I cried.
    Really, does no one think that wheeled folks might want to travel?  And only 1 room per hotel that can accommodate a wheelchair???
   I have received no compensation for what I am about to write - although if someone wants to hook me up, I will be glad to write an official and honest blurb for Hampton Inn and Suites.  
    In my quest for a room, I called another Hampton in Lancaster  and talked to the front desk there.  When I explained (and they didn't have a room either) what I was looking for, the young lady there offered me 3 different hotels (not all a part of the Hampton Empire) with phone numbers and the tourism office number to call as she was sure that if the hotels didn't have a room, the tourism office would be able to help me locate someplace.  Fortunately, I found a room and then the Ephrata Hampton called.  I was impressed with both the Lancaster and Ephrata staff.  Professional and very helpful.
   Our room was extremely clean.  The staff was great - helping Jarrad get coffee.  The bed - well. . .  it was not our bed.  We slept as well as we could on it but what can you say about a hotel bed? Better than a stable??? 
    We had a great view.  The hotel is on a hill and overlooks Ephrata, which is a pretty little town.  There was an Applebee's nearby and the hotel had a pool with a lift for Jarrad - which he did use.
   All in all, it was good.
   Still, Dorothy, there is no place like home!