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..

Circling The Issues

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Last night I flew home from a weekend of visiting my college best friends. I could have driven but got a good deal on a flight and since I am trying to preserve my car until Husband is done with school I thought why not save the miles and fly.

I was laughing about the irony of this decision last night as a huge rainstorm landed smack on top of the airport I was flying into causing us to have to circle the area in the air until we could land. After 30 minutes of circling and knowing Sister K was waiting in the cell phone lot for me worried, we landed safely and I was happy to be back on the ground.

I knew one way or another we would land, it was either going to be in my city or a city nearby. I was praying it would be my city becuase if it was another city I was just imagining the mess I was going to be in trying to make it back. Renting a car/continuing on the plane, how would that work. But when this is happening in a plane you don’t have any choice. You literally have to just “go with the flow.” That is what traveling amounts to most of the time, especially air travel. You have to “go with the flow” because you literally have no control. The pilot is in control and you are in the passenger seat. If you think about it the only thing you have control over is what kind of drink you would like and turning off your electronic devices.

I am feeling like that in life right now. In a way with Mom’s MS I am not in control. She isn’t either, but she has a little more control over how she handles it than I do. But the tricky part is at what point do I have to acknowledge that she may not be utilizing her control in the best manner? At what point do we begin taking part of the control? Realizing allowing her full control is not benefitting her anymore. I know those are dark sentences. Maybe even a bit unspoken territory. But it is there I struggle. There I begin to feel like a bad daughter. Most daughters deal with this battle when their parents are more elderly, their cognitive state more deteriorated, a point when it is more acceptable to take this control. I am a lot younger and so is Mom, yet at the same time Sister K and I feel like we are hitting a wall and needing to take some control. But we struggle because this is also our Mom. I want to respect her but at a certain point I am beginning to think you have to invoke “tough love.”

It’s messy. I am trying to figure that out right now. Talking to Dad about it quite a bit right now. Talking about how to handle certain issues also feels as though we are infringing upon my parents’ marriage. Their way of doing things. The dance they have been doing for the past 31 years. At the same time I also think MS changed the rules on this. This is not just about Mom and Dad but it’s about our entire family. All of us dealing with this together. And the control and the decisions Mom makes impact all of us in one form or another. I feel it’s time for some big decisions. I feel it’s time to stop circling the issues and to just land, as painful as it may be.

How do you handle decisions with your loved ones? Do you believe there is a fine line to be walked in “taking control?” Do you have any crazy stories from plane flights?

Not Crossing The Line

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It’s been a bit of a tough week. Thoughts in my head. Words being spoken. Concerns being raised. Its all had me thinking a lot. Thinking about my relationship with Mom. She is still Mom and I don’t want to treat her any differently. I don’t want to give her a free pass when we argue because she has MS and I don’t want to just give in to things because she has MS. At the same time I don’t want to seem like a heartless daughter who doesnt empathize with what she is going through. That’s the part where it gets tough. At what point does the line get drawn. At what point does an argument go from a simple mother/daughter one to a more complicated mother/daughter argument. The kind where if I am not careful I could really hurt Mom’s feelings and become insensitive to the changes going on with her. Changes that I need to learn to accept instead of causing my frustration with them to add one more thing to her plate to be down about. The kind of argument where you forget what the issue is because you are both trying to make a point. I think I am in the midst of walking that line right now.

I am far from perfect. My family is far from perfect. And adding MS to our lives has complicated our family dynamic in ways I can’t even fully articulate. It has also complicated my relationship with Mom. Mom and I had an argument Tuesday. Tuesday was also the day my phone decided to die. I then didn’t talk to her Wednesday and Thursday. Part of that was caused by legitimately being busy but I also knew I could’ve made the time to call if I wanted. I didn’t feel the motivation. I felt I needed a little time to myself to figure out my thoughts. I needed to chill out from our argument. If I got on the phone there was a good chance I wouldn’t be able to let it go.

Today I realized I needed to call Mom. I realized as I was walking to Starbucks today (for free Starbucks refreshers from 12-3) that calling Mom to say hi and catch up was a bigger deal than resolving our argument. I don’t really think our argument will be resolved for awhile. It involves lots of convoluted issues. She has some points, I have some points, some of it has to do with MS, some of it is just life but at the heart of it I don’t think there is going to be a big, grand resolution anytime soon. At the same time it is not such a big issue that it has earned the right to impact communicating with Mom. To impact a part of her life that she really depends on and if I had to admit to myself, I do too. In many ways communicating is one of the biggest things we have right now. I need to put aside my stubborn tendencies to make a point and just move forward.

So today I did. I called Mom. We both acted like nothing had happened. In reality she may not really realize I am still bothered by what happened. Or she could be using her own Mom intuition to realize she needs to not bring it up either. The point though is by not calling Mom today I believe I would’ve crossed the line. Crossed the line into hurting her with my lack of communication. I didn’t want to be that person. I didn’t want to be that daughter. So I took a deep breath and called Mom. Had a great conversation and felt better when I was done. Let the unresolved items stay unresolved. They may stay messy and unresolved. Focus on the moment. And in that moment today I was having a good conversation with Mom.

Do you ever realize sometimes you have to just leave issues unresolved and move forward? Do you believe there is a line in dealing with loved ones between a simple argument and crossing into something that hurts much more? Did anyone else participate in free Starbucks today? What flavor did you try? I got the lime refresher…it was good but a little too lime flavored for my taste. Kinda wish I tried the berry.

It’s A Rambling Kind of Day

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My post yesterday sparked a few comments that I loved. Comments that have had my thoughts flying. Flying in all directions. Leading me to think sometimes you need to just ramble. 

To paraphrase the two comments that really stood out to me:

“The real surprise would be if MS did not change your Mom.”
“The changes from MS are happening faster than you can keep up with them.”

I read these and just paused for a minute. They were right. They were spot on. Then a flood of thoughts hit me. A flood of mixed up thoughts.

I thought to myself, duh. Why am I even questioning if Mom is changing. She is obviously changing. MS is a powerful disease. Do I really think this isn’t going to change her? But then this makes me sad. Sad that MS is winning in a way. Changing her in ways I don’t want her to change. Changing her spirit. Changing her attitude. Changes I can’t control and can’t do anything about. Mad because I can’t do anything about these changes. Furstrated because yet again I feel helpless. I take one step forward mentally and then a week later I am taking two steps back. I feel like this is a never ending cycle. Maybe it is. But it is a frustrating one. How am I supposed to deal with this when I can’t get a grasp on what is happening.

Which leads me to the 2nd comment, the changes are happening faster than I can keep up with. Faster because they aren’t all physical. For every physical change there is a mental one. Just as I get a grip on the phsyical, here comes the mental. In the same breath I am beginning to feel like I can deal with the physical changes better than the mental ones. Take away Mom’s ability to walk but don’t take away Mom. Her spirit. Her personality. Start messing with that and I begin to feel like a bigger part of me is being messed with.

And I don’t know how to handle it. I know very few people who can relate. When I think of the other people in my life who are my age, I think of no one who understands what this is like. At the same time there also aren’t many people I would share this part with. This is the not so pretty side. The side that isn’t full of positive and uplifting thoughts. This is the cold truth of what is going on. This is my life. In many ways at times I feel like it is my secret life. A part of MS that I don’t want to share with many people because it is personal. And sad. And saying it out loud to someone other than my immediately family makes it even more real. To watch people’s faces. Watch them struggle for words. I don’t want to go through it. In the end the only other person who gets it from the same perspective is Sister K. She’s the one I can say the dark thoughts to, tell the frustrating conversations without editing any details. It’s Sister K and Me navigating these changes. These changes that are coming faster than we can keep up with. And won’t seem to stop.     

Do you ever feel like sometimes you need to ramble? Do you ever feel like your thoughts are happening faster than you can keep up with? Thank you for your comments. Thankful for the support I have received here.

Unsuccessful Thoughts

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Can MS change a person? I am really questioning this because I am wondering about my own Mom. I am seeing changes in her personality that to put it simply, I don’t understand. I feel like an imposter is slowly taking over as Mom. I can’t explain it really, it is difficult and convoluted and again to put it simply, a mess. But I am struggling. I am struggling because this is Mom- my mom. The woman who I have always had on a pedestal. Who is supposed to be invincible, who is supposed to always say the right thing, who is supposed to listen, who is supposed to be there. All of a sudden things are changing. I don’t know why and I don’t know what is causing them to change. Is it just the simple pain of growing up, I don’t think so. Am I asking for too much, again I don’t think so. But something is strained. I feel stressed about what that something is- I am trying to put my finger on it and struggling to do so. Maybe if I can figure it out I can figure out how to deal with it. Maybe there is no way to handle this. Maybe it’s just life. Maybe I am searching for an answer that doesn’t exist.  

But I continue to wonder, can MS change a person? What do you think? How do you handle changes in people?