Seeing Sea World in a Different Way

7.6.12 Sea World Day

For the past few years, Dad and I have wanted to go to Sea World. We say this and then it never happens. This year I decided we were making it happen. I picked a day, I sent out an official “Save the Date” email to my family and we all had it on the calendar. Even Husband came for the day. I think halfway through he couldn’t believe he was actually at Sea World with his inlaws and no children but I know he secretly had a fun time.

Regardless of it being a silly day of family fun, I was a little anxious because of Mom. We needed to rent her a scooter and the website says they are first come first served. I knew try as we might we were not going to be there at 10am when the gates opened. We run about an hour late to everything we have planned and this would be no exception. Arriving around 11 we were right on time in my family’s world. But having never done this before, I wasn’t sure how fast they went or how difficult it was to get one.

I was also nervous because of the heat and the impact it can have on Mom’s MS. We made sure Mom stayed really hydrated during the day and we paid an extra $10 and got the covered umbrella hanger above her scooter which was the best investment we could have made. Sea World is unique in that you can stay out of the sun fairly easy. We saw every show and they are all held under covered areas. We sat in the handicap accessible seating at the top so there was also a nice breeze. We also made sure to spend lots of time inside indoor air conditioned exhibits.  Mom made it the entire day and we were all so proud of her by the end of it. I think she was even amazed with herself having told us she was trying to predict beforehand how long she would last before needing someone to take her home.

It was one of the most fun days my family has had this summer. It showed me that yes MS has made simple outings like this a little more challenging but we have to press on regardless. We have to keep living our life. We have to keep having our family adventures, going to different places and not just locking ourselves up at home. It requires more planning, it requires more organization and it also brings with it a lot more unknowns. These are all little things I struggle with. I am a planner and I really like to have my plan, know what’s going to happen and stick to it. I am “slowly” learning though that I am going to need to just roll with it. Roll with the changes, embrace the unexpected and just deal with it. Know going into things that there will be unexpected things that happen, changes that we can’t anticipate and get comfortable embracing this. In embracing the unexpected I am also growing as a person. How I handle Mom’s MS as we navigate the world outside of our house is teaching me how to better cope when plans don’t work out. It’s also teaching me the art of a back up plan created on the fly.

My family had such a great time at Sea World and the thought that we might not have gone because of MS taught me a big lesson. As a family we need to commit to retaining these fun moments and really enjoying them. I don’t know what tomorrow brings but I know that today brings a day of fun that needs to be cherished and embraced. 

Below are pictures from Sea World Day:

 Mom and Me strolling along to the Dolphins show. Check out Mom’s fancy Sea World scooter rental. These things are awesome.

Dad above and Sister K below feeding the ducks. A mandatory stop for my family because of Mom’s obsession with flamingos seen in the background. The ducks liked Dad a little more than Sister K….

 Inside the giant, air conditioned aquarium watching the fish with Mom. It was actually very relaxing.

 Dad has to have knee surgery in about a month because he has torn his meniscus. Becuase of this after walking around most of the day his knee was starting to bother him so we went and got Mom’s actual wheelchair (not the Sea World rental) to roll him around in. Sister K and I just had to laugh looking at both of our parents in wheelchairs.

*Only person not pictured in these is Husband. He was the one responsible for taking most of these pictures. I promise he was there..even if he can’t believe it himself.

How do you embrace the unexpected? Do you struggle with having no control in certain situations sometimes? Does your family enjoy silly family fun outings? When was the last time you went to Sea World?

 

Flying High

We are in the process of booking flights for our trip next summer. Since it will be a long flight we are wanting to make sure we get good seats for Mom especially. I called American Airlines last night to talk to them about upgrades, Advantage miles, etc. Dad and I are going to book the flights on Saturday. Keeping my fingers crossed we get someone on the phone who is knowledgable. Who can help us to book the best travel available to us. But like Dad always taught me, if you don’t like your answer simply hang up and call back. This is a valuable lesson that has served me well in life.

Curious if anyone has any advice on flying with an accessibility, especially a long distance? We have flown with Mom before so this isn’t completely new territory. We have learned how to get assistance to and from the gate, allow extra time to get through security and make sure Mom takes enough breaks to walk around on the plane. This time we will also be taking extra equipment: her walker, her own wheelchair, etc. Lots of little things that I need to figure out how the transportation of these items will work.

I am making a list of questions. I love a good list and I also love crossing items off a list. The list for this trip, I know it’s going to be long. But something about that makes this trip so much more meaningful. I know it is going to take a little extra work planning but I also know it is going to make the experience that much more meaningful. The thought of that is something that makes me smile.

Does anyone have any tips to help book a good reservation over the phone? Anyone else sleepy today because I sure am..

The Art of Planning Ahead

I mentioned last week my family is planning a big cruise vacation for next summer. I knew the planning would be an interesting and somewhat challenging process- I just didn’t realize it would happen so soon.  There have been many decisions to be made- picking an itinerary, selecting the best cruise line, selecting accessible rooms, etc. We have never done a cruise so it is already a new experience but doing it with Mom’s MS adds another level of new to this as well.

We decided to work with a travel agent who is also a family friend. This has been a lifesaver already. She knows Mom’s situation personally so I know she is personally looking out for her. She has brought up issues and ideas that I had not thought of and is working through ways to solve them.

For instance we have to purchase insurance. An insurance policy that covers not only health insurance but a sort of protection since everything is prepaid in case we have to cancel our trip, lose luggage, miss our flights, etc. But you have to read the fine print. Some policies will only cover cancellations because of illness if they occurred 60 days prior and are not a pre-existing condition. If Mom has a flare up or relapse right before, some policies won’t cover it. Through our travel agent we have found a policy that meets these requirements but with a little extra cost. Check. We had to book rooms to reserve the cruise. The rooms need to not only accomodate Mom’s needs but also accomodate our family too. After searching around on the cruise layout I found an accessible room that connects to another standard room. There is only one option like this on board. The cruise line did not offer this up initially but after some extra work on my part I was able to find it. Check. Next up will be contacting a scooter assistance company. I was unaware but there are services that will drop off a scooter for Mom at the pier of the ship and pick it up at the end.

Because Mom’s MS is fairly new to our family we don’t have this down to a science like I am sure many other families do. It is new to us and requires a step back and lots of thought. I am enjoying the planning but want to make sure I have everything figured out the best way for Mom. It is definitely presenting some new challenges I hadn’t thought of- at the same time it is good for me to know that I can work through these challenges and successfully find a solution. It’s empowering and makes me feel like we have control over our fight with MS when I struggle so often feeling the other way around. 

There have been a couple moments when I have this small worried voice inside saying “Are we taking on too much? Is this worth it?” Then I fight it back down by saying yes, yes it is. This is not only important for Mom but it is important for our family. It is our way of not only saying but showing that our life and activities will not come to a halt because of MS.

To say this will be a great learning experience is an understatement but I am looking forward to sharing what I learn with all of you. I think that’s the best way to support each other- showing how we not only deal with the challenges of MS as a family but how we overcome them.

Do you ever feel overwhelmed by trying to not let MS prevent you from doing the things you and your loved ones enjoy? How do you fight through that and quiet the voice of worry inside? Thank you for reading and for your comments, they mean so much. I feel as though I have a virtual support team out there of people nodding along with my words.

Just Beat It

My family attended the Michael Jackson The Immortal World Tour by Cirque Du Soleil recently.

 Sister K and Mom sitting in the handicap accessible seats

We have always enjoyed going to shows but this was the first time we had done something like this with Mom’s MS the way it is now. Mom falls much more under the handicap accessible category than she used to and that presents new challenges for all of us. We purchased tickets in the handicap accessible seating for the first time. There were 2 tickets there and then 3 a few rows behind together. Dad dropped us off at the entrance to the venue. The handicap parking was full so he had to park elsewhere. Sister K and I got Mom inside and situated only to find the handicap bathroom stall was out of order. At this point it literally seemed like there was one thing after another. There was a moment when I saw some women in the bathroom line watching Sister K and I assist Mom into a normal stall- I was filled with envy. How easy for you to be here tonight. To walk in, find your seats and just relax and enjoy a fun-filled evening. Of course we had the exact same experience but just had a few obstacles getting to that point. I am disappointed I even had that thought at all. I have to stop comparing our situation to other people’s in moments like this. It isn’t healthy and it makes me more irrtated inside.   

Sister K sat with Mom during the performance. I sat in the other seats with Dad and Husband. It was easier in case Mom needed anything for Sister K to help. In the end it was a wonderful night that ended with us playing Michael Jackson songs the entire way home along with stopping for some drive through ice cream. Most importantly it was very uplifting to get Mom out of the house and go do something different with her.

But it is tough. It definitely takes some effort to remain active as a family with Mom’s MS. Nothing is easy anymore and nothing is done quickly anymore. You have to anticipate and expect the unexpected and know things will most likely not run smoothly. Plus we are new to the phrase handicap accessible. New to knowing what our rights are, what we can demand, etc. For instance when we realized the handicap stall was broken we were told we could use the family restroom. There was a line for it but later after waiting in the line we were told we have priority. Now we know. We also now understand how handicap accessible seats work at an arena. (They are great by the way. I was really impressed.) Everytime we do something like this we learn new tricks which make next time easier. It is hard though because it requires me to be very “go with the flow,” to adapt quickly to any changes and not let it bother me. I have said it over and over on here- I am a planner. “Go with the flow” is hard for me. These situations also require me to fight urges to get stressed or uneasy and keep things calm and steady for Mom. I know she watches closely for my reaction in certain situations. I think she knows I am the first to break if there is something to really be stressed about. I wear my emotions on my face. Sometimes that is a positive but sometimes it is a real negative.

My family has made a committment to not passing up opportunities like this because Mom has MS, even though it may be more difficult on us. These moments and memories are as important for Mom as they are for us. They change things up, they are a break from her same routine and they get us all out of our comfort zone. I think in many ways conquering nights like these teaches me a lesson too. Just because you may encounter one minor setback doesn’t mean a domino effect of setbacks is about to occur. It is teaching me to keep my cool, to think quickly and calmly under pressure and to just live in the moment. Focus on Mom and focus on the fun. I need to tell any axiety inside to Beat It.

How do you react when you are stressed? How do you handle minor setbacks when you are in a situation where you have little control? Do you believe it is important to not let MS control our lives and continue doing the activities we want to do? Have you seen the Michael Jackson Immortal Tour?

All Aboard

I love to travel. I wish I had an unlimited amount of money AND an unlimited amount of vacation time to do it. Both are big hinderances to the actual travel part. My family enjoys taking vacations together. Even to this day, Sister K and I still share a hotel room with my parents. The only thing that altered this was the addition of Husband into the family. Now we get two rooms. I think Dad’s reasoning was always why would he pay for two rooms when we all fit into one. Sister K and I laugh about this when we hear about our friends whose parents don’t share rooms with them anymore. But my memories of all of us sharing one hotel room are some of my favorite vacation moments. Waking up Mom in the middle of the night for snoring, getting mad at Dad when he can’t do anything right surrounded by a small room of women, and the mountain of clothes Sister K and I accumulate on top of our luggage.

My family is talking about taking a big family vacation next summer. We haven’t taken one in awhile and next summer seems like an opportune time to do it. There is a catch though. We have more factors to consider now. We don’t allow Mom’s MS to inhibit our abilities on vacations but for the past few years we have been going to the same places that are familiar. The same city, the same hotel, the same environment. It limits the stress that can occur when you are dealing with the unknown of your surroundings. It lessens the need to stay two steps ahead at all times.

But, this time we are looking at something different. We are looking at a European cruise. We have never done a cruise but I think it could be very relaxing and simple for Mom. It’s difficult though because while we do not consider Mom to fall 100% into the handicap accessible category she does about 75% right now. This makes things tough because in our minds there are things she can do, but in reality with the way cruises and trips to various cities are designed it may not be the case. We also realistically just don’t know where she will be with her MS a year from now. Our hope is for improvement. The dream is to be walking without a walker. For now our immediate goal is to get her walking back on “Pinky” her 4 wheeled pink walker.

Dad told me I was going to be the one planning the vacation. I typically am the “planner” of my family but this time I have official responsibility. Normally I just self-appoint myself to this role. I have started doing some research. MS though adds another layer to the planning that I am not used to. Typically I would get online to explore and not think much about the landscape of places, how to get around or potential mobility issues. I am now finding myself asking these very questions. I have been told a cruise can be very relaxing, handicap accessible and Mom would most likely really enjoy it. I also know cruise passengers come in all shapes and sizes and they have assistance to accomodate those needs. I am sure it will all be fine. But these are just thoughts I am having. New concerns. New issues. New things I haven’t had to deal with before.

I have researched online about tips and advice on cruises and people with disabilities, specifically MS. There isn’t a ton out there from people who have gone through it. The information I have found doesn’t seem very relatable given the the unique aspects of MS.

So today I come to you for advice:
Do you have any experience vacationing with a disability or with someone who has a disability? Do you have any experience with this on cruises? Things to avoid, things to look for? And most importantly regardless of a disability, have you ever gone on a cruise- Do you have any recommendations?