Traveling-#1

I decided to travel recently, which, since my injury, has been very minimal.  The first trip was a short roadtrip with Phil, Jordan, and his girlfriend (Hannah), to Vegas for a family Reunion.  We were meeting up with my family who I had not seen for up to seven years.  My sister, Wendy and her husband from NY,  as well as his side of the family would meet us out there to visit with my niece. She started teaching 8th Grade Orchestra last year in Vegas.  My nephew who is now living in Steamboat Springs, CO as a Ski Instructor would also be flying in.  Jordan has not seen his cousins since prior to going into the Army when his Grandmother passed away in 2011 and we had the Celebration of Life and the family all flew in to spend the time together at our home.  My sister Dawne from Phoenix was also going with us.We all rented a house and discussed what the weekend would look like as we would only be spending Fri-Sun with them.  The rest of the family would be there a bit longer, until Wednesday the following week. I  typically do ok with Roadtrips as I can sit on my "special cushion", recline my seat, and even nap if needed on the ride there.  The part that can wear me out is getting ready for the trip, the preparation, the shopping, the packing, etc. That is exactly what happened on this one. We discussed that we would be spending the time in the rental house over the weekend, as it was equipped with a swimming pool, pool table, and all the necessities for cooking.  I spent the time shopping for a bathing suit, planning and shopping for games, planning and shopping and some preparation of Breakfast food and snacks. We did a trip to Sams club to have paper products available knowing the house would only have dishes for 8 people. We got paper plates, bowls, Silverware, solo cups.  We made sure to bring extra towels, sunblock,  blow up beds, bedding and pillows. We went to Sprouts to get fresh veggies to make Phil's Homemade Salsa and have some healthy snacks. We provided Coffee and Creamer and Disposable Coffee cups, once again knowing the house would not have enough for all of us on a given day and that way we would not have to do dishes just to share coffee cups and silverware. All of this was carefully pre-planned and pre-shopped for.  A cooler filled with cold drinks: water, ice tea, and other flavored beverages to share.  As you can imagine I was wiped out by the time I was done shopping and packing. My pain level was off the charts, my legs were weak, and I was now a bit under the weather but ready to hit the road.  We hit the road alright...arrived, and had a rude awakening! It opened my eyes to even more disheartening actions of others.  No matter how hard I have tried to educate others on my condition, provide resources and education, and discuss my limitations, it has not always  been successful. I can not tell you the disappointment of this trip, except to say I was so grateful I got to spend this time with my husband, my son, and Hannah.  We got to spend the time bonding together and learning that family can disappoint you, and we learn to support each other in the aftermath of that disappointment. I learned my son has a heart of gold and can lift my spirits well beyond anyone else's reach.  I can not even begin to describe how much I appreciate his kindness and intuition.  He knew I was hurt, disappointed, frustrated, discouraged, and defeated.  I had expectations from this trip that did turn out as "expected".  The family did not just end up "hanging out" at the house all weekend. Friday when we arrived we met them for Breakfast at a restaurant (remember, I had already bought items, which they knew).  We then went to the house to unpack and hit the grocery store for food for the rest of the weekend (lunches and dinners). Funny thing is, I dont think we ever used any of it.  We got back to the house and I crashed, had to take a short nap.  When I woke up, the NY family was getting tired. Knowing Jordan and Hannah had not ever been to Vegas, Phil and I thought they may enjoy seeing the Bellagio and I thought I would teach her how to use those slot machines.  So we packed my wheelchair into an uber and hit the Bellagio. We stayed a couple hours with the kids and left them to a night out on the strip.  Saturday morning came along and we did not see the NY family.  They were interested in sightseeing, or I am not sure exactly what, but they were gone all day Saturday from 10am-4pm while we were at the house waiting for their return.  Remember, I am wheelchair bound outside of the house, so running around, sightseeing in Vegas is not exactly suitable for me. Which we had discussed prior to agreeing to meeting them for this trip in the first place. Agreeing to "hang out" around the house.  Finally, the 4 of us got hungry and went to a local Vegan restaurant as they still had not returned.  We enjoyed ourselves and it was not too difficult for me to get in/out of.  We returned to the house where the rest of the family had also found their way back. We decided to play some games. Some participated, some did not, but for the most part, it was a memorable time and some good laughs.  The family from NY got tired a bit earlier than the 4 of us and went to bed. The 4 of us stayed up for a bit talking which was nice to spend the time with my son and Hannah.  Sunday was the day we were heading home, but wanted to hit Fremont St first and so did the rest of the family.  They were ready before us of course because someone with a disability can not get ready as fast as someone without. So off they went...  They couldn't wait for some reason.  Anyways, we met them there, they seemed to do their own thing, hang with their own.  I was in the wheelchair, my husband pushed me around, like he always does.  There was never an offer from another family member to push me to give him a break. We went off on our own.  Jordan and Hannah had not been to Vegas so Fremont St was of interest to them. We decided to meet up with them in a bit.  Once everyone said they were hungry, the family from NY chose White Castle Hamburgers, a restaurant Jordan and Hannah can not eat as they are Vegan, so they could not join us and went their own way for lunch. Phil and I showed up at White Castle and they were all done eating, got up and left. My sister stayed and chatted for a few minutes.  When we were done, we walked down Fremont St once again and she joined the NY group.  I invited her and my niece to the Oxygen Bar with Phil, I, Jordan, and Hannah.  Not the minute they were done, part of the NY family came over, and swooped them up to go back to the rental  house. The 4 of us were not even done with our treatment yet.  When we were done, I made sure the kids did not want to stop anywhere else for souvenirs etc, and we headed back to the rental house to pack up and headed out of there as fast as we could. I could not stomach anymore of what I had just been through. I have had to slowly watch friends disappear, ignore me, isolate me, and reject me, but never have I experienced it with family.  While we were packing to leave the whole family were outside on the patio, not once did they come inside to make conversation or just to spend the last few minutes together. I was in complete awe and utter sadness.  Once done packing, we had to go outside to say goodbye to them. We said our goodbyes, got into the car, started to drive off. I tried so hard to hold my emotions in to protect my son, but I just could't.  The tears started..he reached up and put his hand on my shoulder from the backseat and said "Mom, I am so sorry they treated you that way this weekend".  He checked on me for hours and days to follow.  He really made such a difference in how I came away from this experience. Hannah was also so supportive and sweet.  My husband was supportive, frustrated, and hurt for me. He has seen it happen so many times, he was just more sad it was family.   I tried to talk to other family about it, unfortunately they can not understand, nor can I expect them too.  This incident has many layers, it is deep, and I can not expect those outside my very intimate circle to understand it the way those close to me do. I came away from this trip learning more about the things I can and can not do. The limits I have to have not  just on myself but others as well.  I can not be around people that do not understand my conditions, or at least not for a whole weekend.  Even though I have spent so much time trying to educate family and friends verbally, on the internet, providing articles, my blog etc... it's still their responsibility to learn or want to learn and perceive the information.