Monthly Archives: July 2012

10 Pages of Fun

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7.30.12

Me. Last night. Approximately 10pm at my kitchen table.
Staring into Sister K’s computer.

Sister K has just about finished her Masters degree. Today all that stands between her and the total bliss of being finished is a take home final. Last night all that stood between her and total bliss was a 10 page paper and a take home final. Together we finished that 10 page paper. At approximately midnight.

As I think about last night I am not filled with any feelings of being annoyed that somehow I drew the short end of the family stick. I am more filled with happiness and love. Sister K and I don’t keep score. I know that if I needed her in a bind she would be there in the exact same way. But it’s these moments that strengthen our bond so when bigger issues come along we can handle them together.

It’s nothing new here that we feel a bit overwhelmed by life right now. In a way the above picture sums that up as well. We were discussing this overwhelmed feeling over Chipotle burrito bowls earlier in the evening. Then we shifted to working on a 10 page paper. I feel this is how we cope. This is how we are going to cope. We are going to talk about it, come to no conclusion then we are going to move on to something else. Then we may shift back. The topic of Mom’s MS is going to be intertwined in our lives but we have to manage it in a way that does not allow it to take control of our lives. Last night it was intertwined with a 10 page paper and watching some Olympic races. A frustratingly complex 10 page paper that I was actually thankful for because it took my mind off another frustratingly complex issue that can’t be solved with a paper. I never thought I’d say it but last night I let the thoughts of a 10 page paper take over my mind and I enjoyed every minute of it.

When was the last time you wrote a 10 page paper? How do you prevent your mind from being consumed by complex issues that don’t have a clear solution? Do you love Chipotle burrito bowls as much as Sister K and me?  

Handling The Impossible

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Dad is spread too thin. I have been thinking this in the back of my mind for awhile. This weekend it became more than a thought. I drove home for the weekend because we had a family friend in town. I had heard earlier in the day Dad’s back was hurting him very badly. He had said it was hurting the day before as a result of sleeping on Sister K’s couch bed. On Friday he went to the chiropractor. By Friday evening when I saw him I could tell he was in pain but was still moving around and functioning. In a sense he doesn’t have a choice not to. He was hunched over and I was concerned. It was one thing to have the thought in the back of my mind that Dad is taking on too much with work, social obligations and caring for Mom. It was another to see what can happen because of it.

It scared me. It continues to scare me. Saturday I took Mom for a few hours and we went to run some errands with Grandpa and went to lunch. I told Dad to stay home and relax. He even admitted he felt weird doing it but at the same time when I got back he admitted how nice it felt. How he hadn’t been in any pain all morning.

Saturday afternoon we talked about how he may need to bring in some extra help in some regard with Mom. He admitted it may be time. We tried to figure out the specific needs of our family. I think the consensus is right now he needs someone to assist in managing the house in some regard. Running errands, grocery shopping, straightening the house, etc. He is working a full day, then coming home at night and running errands and managing the house. He admits it is becoming too much.

But this doesn’t change the fact that I am scared. I am also scared because in a way I have known for some time this was going to happen. I have known Dad is spread too thin. I thought something may happen. And it did. It could have been worse but it wasn’t. But the point is it could have and it could be next time. Dad is the anchor of our family right now. A family that’s being hit with new challenges and changes everyday. Changes that I am struggling with more and more everyday. This weekend I struggled a lot. As I struggled I think I misplaced my anger, fear, and frustration. They came out with Mom even though I know it isn’t her fault. It is the nature of MS. It is how they are coping with the disease. But it still makes me mad. Mad and scared. It makes me feel like coping with all of this is impossible. Like I am going to struggle permanently so I better start getting used to it.

Curious if you have MS, what kind of additional support do you have if any? As a caretaker, what kind of additional support do you have? How do you handle not misplacing your frustration with a situation? How do you keep your cool when faced with constant pressure?

My Personal Olympic Trial

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The Summer Olympics Opening Ceremony is tonight. I have been thinking about this a lot recently. Yes because of the Olympics but also because of Mom. It has made me think a lot about time. Specifically the passage of 4 years. What has transpired since the last time I watched a Summer Olympics Opening Ceremony.

It was July 2008. I had just finished graduate school and moved to the same city as my boyfriend to see if our relationship would work in the same city. We had been long distance for 2 years. That boyfriend is now Husband so I think you can fill in the blanks on if we succeeded. I was moving in with my college friend L. Mom was in town helping me unpack. My mom handled the movers arrival because I had just started working at my new job. The evening of the opening ceremonies she and I were shopping at Bed, Bath and Beyond for a few things I needed. We had dinner together at TGIFridays. Then Husband came over to my new apartment to assemble my bookcase and watch the opening ceremonies.

I am thinking a lot about Mom because so much has happened that I could have never predicted that evening as I walked around BB&B with her. The main difference, she was walking freely around BB&B. She was visiting me by herself. She was my fearless, independent Mom who arrived, took care of me, helped me unpack and then left.

Fast forward to today. Since then Mom has been diagnosed with MS (2009) and today is having incredible difficulty walking with her walker at home and using a wheelchair when we are out in public. I have been quitely thinking about this in the back of my mind over the past week almost in shock. In shock at how much life can change in 4 years. In good ways and bad ways. It makes me nervous for the next 4 years. I don’t know where Mom’s health is headed and it is scary. What form will life take as we watch the opening ceremonies of the next Summer Olympics.

So while the Olympics are a time of celebration and excitement together as a country, this time it has personally been a time of reflection about the past and the future as well as the present. It reiterates that I don’t know the course life will take. I cannot control the future. All I can do is prepare myself for the unexpected. I didn’t know then that I was preparing for today. The same way I don’t know how today is preparing me for 4 years from now. The future is an unknown. For all of us. But having seen how unknown it really is in comparison to 4 years ago I feel a little more nervous about it than I used to. A tough realization I am admitting to myself on this otherwise celebratory day.

Will you be watching the opening ceremonies of the Olympics tonight? Where were you 4 years ago for the Summer Oympics in Beijing? How do you handle the unknown of the future? Where do you hope to be 4 years from now?

Sisterly Love & Sisterly Fights

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It’s moving day. For Sister K, not for me. I hate moving. It is one of the things I hate more than anything in the world. I think I dislike it even more because it seems I have to do it quite frequently- every 2 years. Almost like clockwork.

Because it is moving day, Mom and Dad are in town. They have hired movers but it is helpful to have Dad around to deal with them. Movers don’t exactly respect young 20 year old girls the way they respect a grown man. Our family went to dinner last night and it wasn’t overly relaxing. Sister K was stressed and on edge, therefore I felt stressed and on edge which did not help things when we live in a situation with Mom that is typically at some low stress level. Any additional makes things boil over. And they did boil over between Sister K and Me. Just a friendly sisterly love shouting match when we got back to her apartment.

I have been thinking about it a lot though. Sister K and Me. Our relationship in this family. I am realizing I am depending on it more than I realize. I depend on it to bring me a sense of positive energy when I am with my family. I depend on us to be in sync with one another. I not only depend on it, I think I need it. So consequently when one of us is off, it makes handling the dynamic of Mom’s MS more difficult. We aren’t acting as a unit. We are fighting each other adding more stress to an already stressful situation.

The problem though is we are sisters. We love each other intensely and when we fight it is intensely. It isn’t often but it does happen. It is a given. I can’t expect to go through life without it ever happening. But I need to find a way to manage it so it doesn’t impact what we are going through with Mom at the same time. Last night I felt more short fused with Mom. More short fused with getting her in her wheelchair, getting her into the car, snapping at Dad, and I think it was because of the fight I was having with Sister K. That’s a problem. It’s a problem because in many ways I can’t be just a kid who is in a fight with their sister and wants to be moody. With Mom I have to be a full on adult at all times offering assistance. I can’t make things worse but need to make them better. I need to be part of the solution and not part of the problem.

Today. Today is a new day and Sister K and I are fine. Back to normal. But it still leaves me thinking. Thinking about things I once took for granted. The ability to just have a fight with my sister without it making me unable to “function.” I am still thinking about the effect it had on me and therefore my surroundings. It’s going to take some serious thinking to work on this. Taking a step back when it’s happening. That is going to be easier said than done, as most things are.

Do you have siblings? Do you ever fight with them? How do you stay on task with family responsibility when struggling with personal feelings of frustration in your own life? When was the last time you moved? Does anyone else hate moving as much as me?

Focus on the Past

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“Your kid is your kid and wherever they take you, you go.” -The Middle Place, Kelly Corrigan

I am in the midst of reading The Middle Place as I mentioned last week. It is different than the lighter, chick flick literary works I normally gravitate towards. I knew I would enjoy it but I am amazed how much I can identify with it on different levels. Her story is not my story but her relationship with her parents, especially her Dad reminds me of myself in many ways. Every once in awhile there is a quote that really zings me. The above is exactly that. This probably won’t be the last time I quote this book either.

Growing up Sister K and I were always busy with activities. Dance classes, baton twirling, gymnastics, cheerleading, tennis lessons, swim lessons. At some point in our childhood we participated in one of the above. We were never very musical but Sister K did have dreams of becoming Wynona Judd on her guitar from the ages of about 7 to 11. 

Our fun-filled-chaotic childhood would not have been possible without the support of my parents. Mom and Dad were a team. Mom did most of the chauffering but Dad also did pick up too. On the weekends if there was a performance or a competition they were there. They were cheering us on. They were doing this in many ways for the reason in the quote above, we were their girls and wherever our dreams wanted to take us, they were coming along too. I don’t imagine Sister K or I would be the two women we are today without those activities and without Mom and Dad’s support and sacrifices. This is a fact not lost on me at all.

Recently though I have been thinking about Mom and Dad and the parent team they have led for so long. Mom’s MS is changing the dynamics of the team. Dad is playing more of a lead role while Mom is on the sidelines a bit more. It is hard watching this transition. It honestly just occurred to me last weekend as I was sitting and talking with Dad that in many ways he has the entire responsibility of this family on him. He is becoming the primary parent. Mom is still very involved but it is different. MS is limiting what she can and cannot do. It is limiting her involvement physically and mentally as well. As the story goes with all things MS, my family is changing.

I am struggling with these changes to my family dynamic. A dynamic I have been a part of for the past 28 years of my life. A dynamic I love. Lately it seems to be getting more difficult. My patience is wearing thin. My frustration is showing more. The “why me’s” are being said more often. But this quote made me pause and think. It helped me take a minute to remember the past and think that maybe I need to focus on it at times. To cherish my childhood more. To hold on to the memories. And to not forget how it once was. I know it will never be that way again. In forcing myself to think about and really remember my childhood it can help me in the way I view Mom. It can help me to focus more on her as Mom and not Mom with MS. MS seems to be impacting my view of her more and it shouldn’t. I am struggling with that. I need to continue to find a way to not alter the way I view my relationship with Mom because of MS. I know our relationship is changing but I need to do what I can to minimize those changes where possible.

What was your childhood like? What kind of activities did you participate in? Do you think it is easy to forget all the sacrifices your parents made for you as you get older and they get older too? How do you handle changes in family dynamics? Any fellow ex-baton twirlers out there? Let me just say Husband thought my baton twirling days were hysterical when we first started dating.

The Value of a Change of Scenery

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I visited the parentals this past weekend. I headed down Friday after work and returned yesterday. I debated going a little bit but in the end decided it’d be more fun than just hanging out by myself in my apartment for the weekend. I needed a change of scenery. I needed it for myself.

I also wanted to go to see Mom. I can understand more how she is really doing when I see her in person verses hearing about it from Dad. Saturday Mom had a hair cut so Dad and I went to lunch while waiting to go pick her up. When we picked up Mom she looked great and was in such good spirits as Dad wheeled her out. I always think it’s amazing what a hair cut can do to give a boost to anyone. To keep the good spirits going, I immediately suggested we go to Nordstrom’s because they were having their big Anniversary sale. I knew it would really be a good pick me up for Mom to go to the mall and wander around. So we did.

As I was pushing her inside we were surrounded by the shiny tile floor, the bright lights and the clothes…Mom immediately said, “Oh I could just cry, you don’t know how happy it makes me to be inside of a mall.” It was a moment that most people wouldn’t pay much attention to, just walking inside of Nordstrom’s and focused on their destination. But for us this moment wasn’t about the destination but about the experience. It made me pause and truly appreciate this moment with Mom. A moment I would have normally taken for granted and not even paid much attention to that turned out to be a moment that meant so much to Mom.

Mom has always been very active, running errands and driving us around from place to place. In many ways MS has taken that freedom from her. Losing that has been difficult and I am now realizing how difficult it truly is. We try to take Mom places but many times she would prefer to just stay home. There are a lot of variables in trips outside the house that make her nervous and all of these variables are eliminated simply by staying home. But at the same time staying home is not uplifting for Mom. It can in many ways put her in a cycle of being very down about life.

I am not going to lie and say that doing this is simple. The process of the mall and then going out to dinner afterwards was actually very involved. Getting mom in and out of the car, in and out of the store, in and out of the restroom, there is a lot there. It isn’t easy. It requires a strategic balance between different levels of concentration and still maintaining a fun relaxed mood at the same time. I am learning to navigate not only places but also how navigate my mind in a calm way under stressful moments to improve Mom’s experiences in places. I am also learning in a big way that sometimes the best things in life are the ones you have to work for the hardest. In a way some of the most positive memories I can create with Mom right now are the ones that require the most effort on my part. We still have a lot of fun inside our home but activities outside our home can really lift up the entire family.

In a round about way I realized that in the same way it is important for me to personally get out of my apartment and go places to socialize, it is equally if not more important to make sure Mom is also. It doesn’t have to be everyday or even every weekend but it needs to happen. It’s important for Mom and it’s important for us. The bottom line: it’s important.

Do you recognize in yourself the need for a chance of scenery sometimes? Do you understand the balance between making sure you are having a fun time and concentrating on the task at hand? Are you hitting up the Nordstroms Anniversary Sale?

Seeing Sea World in a Different Way

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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?

 

Reading and Living in “The Middle Place”

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I had a family fun post planned for today but I have run out of time and won’t be able to do it. Tomorrow though, tomorrow.

Instead I have just spent the afternoon filling out insurance benefit renewals. Something that I really do not enjoy dealing with because quite frankly it is very confusing. I think I just mentioned the words “if Husband dies I get x amount, he gets this amount” about 5 times in the past hour. So I am feeling a bit morbid.

Today I started a new book called The Middle Place by Kelly Corrigan. It is a unique story about a woman who is married with two children but is wrestling with her father’s diagnosis with cancer in addition to her own diagnosis with cancer. She refers to “the midle place” as the period when the world tells you that you are officially an adult but you still value your parents greatly and still feel like a child in many respects. 

I feel I can really relate to this woman’s story in that aspect. I feel like I am in “the middle place” right now. Navigating the world of being a wife and a daughter while even at times still feeling like a child. Over the past year as Mom’s health has declined in some regards I have felt this struggle more and more. The struggle within my own self, within my own family between childhood and adulthood. Feeling the sense that I am having to “grow up” very fast, even though I realize at 28 I should feel pretty grown up as it is. It has been different though because I have felt forced to grow up because of Mom’s MS. I feel like as the oldest daughter there is a responsibility shift occuring, it is silent but it is there. It has required me to think maturely, make big decisions and even take care of Mom physically in some regards- things I didn’t think I would be dealing with for many years from now. I think everyday I feel this pull between childhood and adulthood. It’s nice to find a name for it thanks to Kelly Corrigan, to refer to it as “the middle place.”

This feels like it has been a long week. Do you recall a time or period in your life when you may have felt like you were in “the middle place?” Have you read the book? Do you hate filling out insurance paperwork as much as I do?

Running Inside The Hamster Wheel

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I am not a morning person. I am attempting to possibly become more of a morning person by going to sleep earlier, but I am a self proclaimed night owl. Sister K called me this morning as I was heading to work. I talk to my family any time of day during any kind of transit but mornings aren’t usually the norm for any of us. Maybe it’s because none of us are morning people at the heart of it. Could it be genetic? Makes me laugh to think it is.

Regardless Sister K called me this morning as I was walking out the door to head to my car. We started chatting about mindless things. I think I began to mention an issue I had been struggling with lately that sort of involved Mom and how I may need her to get involved at some point. Then I mentioned I may go home this weekend. Truth be told Husband is out of town this summer for a business internship and I don’t have a ton of friends here since most of them revolve around Husband’s school and they are all gone for summer internships. I am one of the lone wives who had to stay put this summer to continue my job. Sister K will also be gone this weekend so I thought why not just go home. It’s not that far away and I can enjoy my own pool instead of the apartment pool in this awful heat. Plus I can be around people and not hang out alone.

I mentioned all of this to Sister K. We began to rehash some issues that have been going on and we continued to nearly talk in circles. We both have our own opinions on things. Sister K is getting her Masters degree currently in Special Development Disorders so in a way I feel like she understands Mom’s reactions or tendencies better than we do. But at the same time I believe that it may take Dad and Me a little longer but we will come to agreement on certain things in our own time. You can’t rush it. I told her I’d like to talk to Dad at some point this weekend without Mom around. Talk about the same issues we have been talking about and the thoughts Sister K and I have on them. Do I know if it will get us anywhere? I don’t. But I also don’t know at what point you just give up or if you continue to fight fight fight. I feel like Sister K and I are losing momentum with everything. We can only do so much and then Mom has to do the rest. That part is hard. It is hard to compare Mom’s situation with other people’s who have MS. In a way you cannot compare because no two cases of MS are alike in the same way that no two people dealing with MS are alike.

Regardless sometimes it feels like a beatdown, to be perfectly honest. A losing battle that we never win. Problems we can never solve. Changes we want but will never be made. At what point do you throw your hands up and say nevermind, I give up..It’s your life, live it how you want. Is that surrendering to MS? It can be so frustrating to continue talking the same words, expressing the same feelings, it makes me feel like a hamster on a spinning wheel…and the wheel spins over and over and over. As the child in all of this at what point is time to dump all of this and say Dad you handle the changes when you are ready because Sister K and I are getting nowhere. Even though all of this primarily resides in his lap already do you just give up trying to reason and move on or is that being a bad child? I don’t know. It’s tricky and murky territory. But I do know Sister K and I can’t continue spinning our wheels getting us nowhere. Today Sister K said it best when she said, can we just change the topic, I am sick of talking about this and it never gets us anywhere. So we moved on. Is that what we need to do in life? It doesn’t feel like the right decision and maybe that means it isn’t. Or maybe that means it is. I don’t know.

Do you have any problems you feel you circle around but never solve? Have you ever just given up when faced with issues with another person or do you believe in fighting through it? How do you keep yourself inspired to keep fighting? On a lighter note, are you a morning person or a night owl?

Flying High

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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..