Tag Archives: new perspective

To Care or Not Care What Others Think

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Mom is on a lot of medications. I also know that cognitive issues can result because of MS. I go back and forth on whether Mom’s changes mentally are from MS or from medications. Dad seems to think medications. I think it is easier for him to think that way. I tend to think in the middle.

One thing that makes this tough this is the invention of a little thing called Facebook. Sometimes Mom will comment on people’s walls several times in an hour not realizing she already did that…or not realizing it is strange. It is difficult for me because Mom is the person who taught me my social cues, taught me how to behave and how to act and now I am watching her change in that manner.

Specifically yesterday I logged on to Facebook and saw she had commented on a family friend’s wall three times in less than an hour. It came up on my news feed so I can only imagine how many other people’s news feeds it came up on too. Normally I am good with ignoring these things but this time I wasn’t. I called home and Dad answered. I explained what had happened and he just responded by first defending Mom saying “I don’t think that is that big of a deal.” And then when I got further into it he said “look I just don’t care. If people want to think things let them think things. I am not going to go in there and tell your Mom something and embarrass her.” Which I get…yes. But still it bothered me. I think we are fighting several battles right now and one is in the court of public opinion of Mom and our family. I don’t like when people are around Mom and talk to her like they would if she was an elderly Grandmother. I don’t like when Mom’s friends talk to me about their own Moms who are in their 80s and compare my Mom to them. It all upsets me. So when I see things like this happen it frustrates me since it means this is just one more instance for people to see.

Maybe it is something I need to come to terms with…I can’t fix any of this or make it go away. I especially cannot control Mom. I can’t change people’s opinions. But it’s hard. And sometimes I snap. Sometimes I can’t make a joke of this situation and sometimes it bothers me. Last night was one of those instances.

How do you manage people’s opinions? Do you worry what other people think or are you how I aspire to be and don’t care? Does it bother you when people treat you or a loved one differently than they should be treated?

A Monday Smile

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We got Mom an iPhone for Christmas and it has been a hilarious undertaking trying to explain how to use it…especially via long distance. She’s got the phone and texting parts down but when it comes to fancier things, Sister K and I must take a “patience pill” before we start explaining.

The best thing about Mom getting an iPhone has been the addition of group text messages into our life. Sister K and I have had to learn to slow down our thoughts because Mom can’t keep up…slow down. Seems to be a growing theme with all things MS related. Another post for another day.

Last night, somehow, Mom managed to take a “selfie video” (as she called it) of herself watching the Oscars and of the decorations in her room at her rehab place courtesy of Sister K. It was a silly video but you could tell she was really trying to capture everything in and was so proud of it. She also said if we share the video we are dead…so unfortunately I won’t be sharing.

Sister K was the one who guided her through how to send it to us via text. Sister K seems to be better at explaining these technology things to Mom. I think I get overwhelmed and don’t even know where to begin with teaching her how to do it…it is probably because Sister K is a teacher and naturally thinks in teaching ways. I think big picture, I am overwhelmed and Sister K just dives in…although there are times when we flip roles and it is the reverse of this between us.

Regardless, it was a cute video and it was sweet to see Mom being so proud of what may seem like a little accomplishment to many. It is also another example of the power of technology in keeping people connected…I think people forget that many of these connections could be happening in hospital rooms/rehab rooms with people away from family all over the country. The video also made me smile when I watched it last night…and it just made me sit back and smile as I just watched it again…not for the content but for a Monday smile.

I hope something crosses your path today no matter how simple or silly it may seem that makes you smile too.

 

We Never Stop Learning From Our Mom

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Going home is always interesting right now. Always. I feel like new challenges emerge, new themes within myself and new themes within our family. Everytime. As I am managing Mom’s MS I am also managing myself. I am learning a lot about myself in the process- learning that there are some things I have to improve upon to make me a better daughter but in another way to make me a better person. It is almost as if Mom is still teaching me even though she thinks she isn’t. She is still molding me as Mom even when she doesn’t realize it.

Slowing down: It is no lie that when Sister K and I go home we are forced (not necessarily by choice) to slow down. Our family moves slow, we can’t go anywhere quickly, we run late to everything and we don’t do nearly as many activities as we once did on the weekends. There is a lot of lounging around. A lot of just being.

Slow Down.

Being Present: At home it seems we are constantly multitasking. Constantly. I feel this a lot especially internally. I am looking at what we need to get done during the day. Looking at the point we are at currently. Trying to rush to get errands run, feeling stressed and uneasy about things that need to get done…and in the process my body is present but my mind is not. When every time and I do mean every time we somehow get it all done. And if we don’t get it all done we manage to figure out an alternative. It is like I can’t just have faith that it will all work out, knowing in the past that it will all work out and just chill out. Maybe it is a control thing or the inner planner in me…I am not sure…but I do know I become so fixated on the tasks we need to achieve instead of being present for the moment happening right now. A moment I probably won’t get back.

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Enjoying Moments: I have got to find a way to calm the voices inside of my mind, calm the negative thoughts, calm the worries and just focus on and enjoy my moments at home. I am not saying everything is perfect and that ever moment is enjoyable. We deal with a lot when we are home and do a lot to help Mom in order to give Dad a break. We are not perfect. There are moments where it is too much for Sister K and I step in or vice versa…or moments we notice Dad struggling and we step in. We read each other very well and I do consider that a major blessing. But at the end of the day, these moments regardless of how mundane or boring they may seem to other people, they are our family moments right now. This is the time we have been given to spend with Mom and I need to be present for them and enjoy them. I need to put aside my phone, put my thoughts or worries aside knowing they will all get done and just be present.

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It is amazing to me but Mom is still teaching me through this, she just doesn’t realize it. She is teaching me to be still and to be present to better enjoy moments like the above- an afternoon movie with Mom, Sister K and our dogs. Mom’s MS is full of tough times, special moments and lessons learned. The journey I am taking as being a part of this is molding and shaping me in new ways everyday…I just need to take a step back when I get overwhelmed and remember that.

Do you have trouble with being still and present in life? How do you allow yourself to quiet your mind and enjoy moments? Do you think sometimes the smallest and simplest moments are also the most special? 

A Thanksgiving Lesson

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Husband and I traveled to my family’s house for Thanksgiving this year. Sister K spent Thanksgiving with her boyfriend’s family and with Mom primarily bedridden right now, I wasn’t sure how the holiday was going to go. I am big on traditions- the tradition of seeing Mom in the kitchen cooking, everyone together eating, etc etc. Because of this I was honestly a little nervous about Thanksgiving. But I realized a big Thanksgiving lesson- I realized at the end of the day, the purpose of the holiday is family, not food…and it is being thankful for present moments, not past traditions.

What am I talking about?

Well this year we ordered turkey and stuffing. We also ordered pies instead of baking them. Sister K is a teacher and was able to go home on Tuesday to help Mom cook some sides in preparation for Thanksgiving. Then on Thursday I cooked a few more sides and pretty much played hostess to our small family consisting of Papa, Husband and Dad plus Mom and me. Mom wasn’t able to cook anything like she wanted but I did have her cell phone and while I was in the kitchen trying to figure out sweet potatoes I was calling her (only 2 rooms away) to figure out what to do. Going into the weekend I was quite nervous- I was going to have Husband there and combine trying to make sure he is having a good time with a new dynamic in my family, a dynamic that is constantly changing. I had already talked to him about it a lot and he was totally fine as I deep down knew he would be…he reassured me constantly going into it saying we will just go with it.

And go with it we did. I am still processing the fact that in putting away any plans or expectations and “just going with it” I had a wonderful weekend. I also had a very eye opening weekend. I realized that Thanksgiving isn’t about traditional food, cooking together or Mom being in the kitchen. Thanksgiving is about being thankful. I made myself focus on the little moments of being thankful and I am so glad I did- because it was in those little moments that I found Thanksgiving and found the things for which I am most thankful.

And my favorite moment from the weekend- it didn’t involve Thanksgiving Day at all…

It involved Mom, me and Hallmark channel movies. Saturday night Husband and Dad went to go see a “shoot ’em up guy movie” and Mom and I stayed home. We made Thanksgiving leftovers which we ate in Mom and Dad’s room and watched back to back Hallmark Christmas movies. There we were Mom in her hospital bed, me laying in Mom and Dad’s bed with my high school purple fuzzy slippers, Hallmark Christmas movies on the TV and a daughter whose eyes felt very opened to what family and holidays are all about- it was honestly one of those moments I wish I could have lived in forever.

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Hallmark Christmas movies with Mom

Did I learn a big lesson in what it means to be Thankful? Yes. Did I also learn a big lesson in the moments I am thankful for? Yes to that too. I am trying to focus on these little moments more and more…especially when I am home and especially considering Mom’s MS doesn’t seem to be getting any better. These moments are going to carry me to the next moment. These moments will get me through the tough moments. We are given these little moments to remember that this is it. This is life. It is in these moments that I find pure bliss. I am making an effort to focus on these moments more, moments that I know can’t physically last forever but moments that if I take a minute to appreciate will last forever in my mind. It is these moments that I am thankful for this Thanksgiving season.

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Bring it Aisle 17.

Also, just because I love all of you here is a picture of husband and me this Thanksgiving. After dropping off Papa on Thanksgiving evening, we headed to Target to see if there were any deals we could score and this photo-op happened. Another moment I am thankful for and want to remember forever.

What little moments did you have this Thanksgiving? Do you think sometimes there is too much emphasis on tradition and not enough emphasis on the present? I am thankful for each of you and wish each of you a wonderful holiday season. Thank you for reading and sharing while I try to navigate this new part of life. 

I Can’t Fix This. (and I am slowly becoming okay with that)

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There are two sides to MS in my life- there is what Mom is going through and there is what Dad is going through. I see both sides. Or I should say I hear both sides. More specifically I heard both sides on the phone yesterday.

Mom is in pain. A lot of pain. She is also pretty much bedridden right now. It’s the first time I have said it that way but that is what it is- Mom is pretty much confined to her bed. Her physical therapist has recommended she possibly go back to the rehab facility she was in post-hospital in May 2012. She thinks it will do more for Mom than she can do with just a couple hour visits a couple times a week. Mom feels helpless. Mom feels bad for the burden she is placing on Dad. She feels sad that this is happening. And I get it.

Dad is overwhelmed. Rightfully so. He is going nonstop these days. He does have someone in our house both during the day and at night to help Mom. But on the weekends he is on his own. He’s also just mentally going nonstop. Running his company. Running our house. Also managing Papa’s life. It’s a lot. I have known this for awhile and unfortunately instead of getting better with the addition of help in our house it kind of seems to just be a small band-aid.

But for the first time I really didn’t get overwhelmed/depressed/stressed by this. I listened to Mom and talked to her. I listened to Dad and talked to him. Then I got off the phone and just sort of let it all just settle into the back of my mind. I am not avoiding the issues but I am also not focusing on them. I am beginning to believe we are reaching a cross roads with all of this. A cross roads which I am not sure what the result is going to be because for once I am finally admitting I not only don’t have control but I also can’t fix it. The two biggest things I struggle with I am slowly realizing to let go of them. Call it growth. Call it faith. Whatever it is, I need to trust it to guide my family and me through the challenges we continue to face.

Thanks to this place for listening. And thank you for being a place for me to share my struggles. I think I have experienced this little thing called growth thanks to this other little thing called my MSRecess.

Have you ever had a challenge or struggle that you finally just let go of? Have you ever experienced issues with trying to control or fix things in life and finally realized you just can’t? I’m not an expert yet but I hope I am slowly getting there. I’d love to hear your tips when you feel challenged by life.

How Well Do You Know Yourself?

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I don’t like change. This isn’t really some new revelation to me and it is also not a secret confession. I don’t like change. I get a lot of it thrown at me it seems and I really don’t like it. It is such a normal statement for me to make that I even made it while chatting with my boss at lunch today while we were talking about our lives. I don’t even remember specifically what we were saying but I said, “Yeah well it makes sense because I don’t like change.”

She laughed and said well that’s funny because you are in PR. And we moved on to talking about other things. But the comment hasn’t left me all day because it’s true- I work in public relations- a career that no two days are alike, I never know what will be thrown at me when I walk into my office in the morning or even the second half of the day. The media could call, I could need to pitch a story, a crisis could occur…there is a constant unknown and that means a constant ability to change.

Yet I don’t like change.

It never and I do mean never occurred to me that the career path I have chosen for myself is in direct conflict with who I am deep down. Or is it who I am deep down? Do I really dislike change as much as I think I do? Do I really struggle with it as much as I think I do? Because I do really well at work. I do really well with the thrill of all of suddenly being thrown the impossible and making it possible. It’s a stressful period while I am making it happen but once I do, it is a complete rush.

It’s just got me thinking. They say opposites attract when it comes to significant others, but do you think opposites ever attract when it comes to a career? Is my work persona who I really want to be in my personal life…or is it who I already am, I just need to realize it?

Lots of questions here today but definitely no answers. I do think the thought and connection has entered my head for a reason…now I just need to figure out that reason.

Have you ever worked in a job or volunteer position that requires skills that are opposite of your personality? Do you think we are ever drawn to tasks that are opposite of what we think we would really prefer? Do you ever think we believe our personality traits are one way, yet really they are another? 

Leaping Over Puddles

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Halloween is pretty uneventful for me because Husband and I live in an apartment and we don’t get any trick-or-treaters in an apartment complex. So minus taking pictures of people dressed up in costume at work today (since I am in charge of our company’s social media and internal communications) and my cupcake adventure last night, it’s just been a normal day. But a very rainy day. It poured here all last night and all day until around 4pm. Then it all just went away, it had cooled off a little and the sun came out.

I decided to go for a run at the park even though I knew the trail would be soggy. Something about it just felt nice on this holiday evening. As I was running I was doing some thinking and also a lot of leaping over puddles. I had to really pay attention to the path because all of a sudden you’d be zig zagging to avoid huge puddles or piles of mud. Occasionally though you had no way around the puddle- so I leaped over it.

After I did this a few times I started thinking about those puddles. About how life is full of them. Smooth ground for awhile and then a big mess you have to get through and then smooth for awhile and then a mess to trudge through..and if you are not paying attention the big messy puddle sneaks up on you and before you know it you are right in it. I think I have a tendency to get in a puddle and then stay there. Focus on the puddle. I have a hard time letting go of the puddle. It’s a small feeling of negativity/glass half empty I am noticing that is always there in the back of my mind. But when I was running tonight I got such a rush after I’d leap over a puddle successfully. I started thinking wouldn’t it be great if I could just leap over the negativity and keep things positive. Leap over the messy puddles in my life. Not avoid the puddle, not jump into the puddle, but simply acknowledge it, figure out a plan and leap over it.

How do you handle negative thoughts? Do you think sometimes we can just dwell on things too much and really we just need to leap over them to move forward? Did you or your family dress up today? Happy Halloween!

The Family We Were/The Family We Are

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MS has changed my family in a lot of ways and it is continuing to change my family in a lot of ways. My family that I have always been fiercely proud of and very protective over is changing in ways I cannot control. It is changing Mom, Dad, Sister K and me. Changing the way we interact, changing our dynamic at home, changing our activities- it is changing us.

This past weekend really shed a light on those changes as Sister K brought her boyfriend home for the weekend to celebrate Easter. All weekend I tried hard to fill in the holes that Mom should’ve been responsible for with a guest at our house. I didn’t mind but it made me realize even more that this is my role now and I needed to step into it for Sister K. I feel like I am doing that a lot in many capacities in my family- filling in the holes of where Mom cannot anymore.

But as the weekend ended and we were heading back in the car I was talking to Husband and I got upset. I felt uneasy after the weekend and couldn’t figure out why- and then it hit me…I was mourning in many ways the loss of my family as we were and realizing what we have become. I was sad because Sister K’s boyfriend will never know us without Mom’s MS. Because Husband and I started dating in college, he knew Mom before her MS and knew our family dynamic without all the extra added stress. At this point in my life I can define all relationships into two categories- those who knew my family before MS and those who knew us after MS. There are pros and cons to being on both sides of the line but I know that those who knew us before knew who were were- knew how we operated- they knew our true family. Those who know us now I am not so confident of the picture they get. I don’t know what they take away after meeting all of us in our current dynamic.

I still love my family very much and I am still obsessed with the people I am blessed to call parents, grandparents and of course Sister K…I would not change them for a minute. But I still feel like I am mourning the loss of my family as we were and realizing with both eyes open the family we are becoming.

Have you ever experienced changes in your family that make you aware your family dynamic is changing? Are there people in your life who know your family in the past as opposed to who they are in the present? Does what I am talking about even make any sense?

The Mental Slow down

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I was home for a few days two weeks ago to stay with Mom while Dad was out of town. I had a love/hate relationship with those two days. I loved being home. I loved staying with Mom and spending time with her. I hated everything that had to do with MS. I hated how it tested my patience.

It gave me a great sense of appreciation for everything Dad is dealing with when it comes to Mom. It also made me feel like a failure because I can’t seem to handle everything as smoothly as he or Sister K does.

After quite a bit of soul searching, I think I may have found the root of part of this- I need to slow down. I like to go-go-go. I am a planner. I am always one step ahead and thinking one step ahead. This way of living, feeling and thinking does not work when your Mom has MS. Because these tendencies are pretty heavily intertwined in who I am…in may ways Mom’s MS is fighting constantly with who I am.

I came to this realization about halfway through. I then felt really frustrated with myself. I spent the rest of my time home trying to mentally slow down. Physically slowing down is one thing. But mentally slowing down and focusing on the present with Mom is tough. But I tried. And I was successful for a day. I know it’s a day, but it is some sort of proof to myself that I can do this…baby steps.

So here comes my new challenge, the mental slow down.

When I am in the presence of Mom I need to make a conscious effort to mentally slow down. Fight my urges to speed through our time together and get lots of things accomplished. Instead slow down. Realize I am not going to accomplish that many things. Most importantly realize that is okay and realize the important part is the moment with Mom.

Do you ever had a tendency to try to speed through life? Is it easier to physically slow down than mentally slow down? Do you ever get the two confused?

The Warrior

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This past weekend Husband’s family visited. I struggle sometimes because it is difficult to have a mother-in-law who is healthy and active and then have my own mother who is struggling and not as active. It brings to mind a lot of challenges internally for me and has pretty much since we got married. But this weekend, I really put those aside and tried to just enjoy the time with Husband’s parents and I found that when I did that things worked smoothly. My mind was more at ease. When I just lived in the moment, not worrying about the future with my parents and inlaws but instead just enjoyed the weekend…things just worked.

One interesting thing did happen though. We took Husband’s parents to a university basketball game. My father-in-law is having issues with his hip and may have to get a hip replacement eventually. There was a quite a bit of walking to get into the stadium. We saw an area for accessible entry and Husband and I walked up to ask a question about how to get to our seats from outside. The thought went through my mind to ask if we could enter in this specific spot, but I held back since it wasn’t my own parent. In hindsight I should’ve just asked and next time I will. Later, Husband told me he wanted to ask but didn’t know how. He said he didn’t know how to word it. He said he was unsure what was appropriate to say or unsure what they would say in response. He also said he thought I would’ve known exactly what to say in this situation…I deal with this all the time…and I am years ahead of him on this topic.”

And he was right. It made me take a step back and think of the lessons I am learning in the process of dealing with MS. Sure there are tough moments. There are also good moments. There are also moments of complete failure and moments of complete success. But through all of them I am learning lessons. Life lessons.

In no particular order, I offer you a few of my own personal lessons learned:

  • Don’t be afraid to ask for anything. What is the worst that will happen? Someone will say no. They might..but most of the time they won’t.
  • Chivalry for Mom exists 100%. People hold doors. People get out of our way. People don’t mind stopping their cars while we cross the street. We force people to press pause in a very hectic world. They press pause and watch. Sometimes they are impatient and rude, but for the most part they are kind. Blow off the rude ones but embrace the feeling of the kind ones.
  • Also realize people are selfish and are not paying as much attention to you as you think. They are not staring at you pushing your Mom in a wheelchair or getting in and out of the car. Even if they are staring they will forget shortly. Because strangers don’t really care that much about you..and take comfort in that.
  • Assume your plans will fail. Something will go wrong. Learn to roll with the punches of MS and the punches of life.
  • Stay calm. Mom is watching me and waiting for my cue. If I get stressed it means Mom will get stressed. And a Mom with MS who is stressed is a full on recipe for disaster.
  • Cherish the moment. Cherish the phone call. Cherish the experience. If Mom is having a good day, cherish it. Take seconds to remember it and embrace it. Don’t assume these will come everyday. But cherish them because the memories of these are what gets you through the tough moments.
  • Life is going to bring people into your life. Wonderful people you never imagined meeting. Realize these people are your support team and they are gifts. At the same time, people in your life who you always thought would be your support team are going to disappoint you. You will have to find a way to “let them go” realizing at times we have to clean out the old to make room for the new.
  • Keep perspective. Don’t sweat the small stuff. Realize the importance of MS in your life and the large place it holds in managing your daily stress level. With that being said, little things don’t deserve a big place in your stress level. They don’t deserve a place at all. Anything unnecessary that contributes in a negative way to your daily stress- get rid of it.

Only the strongest families are given MS to deal with- and even more so than that, only the strongest children (no matter what your age) are given a parent with MS. Life is going to give you the tools you need to get through it, but it is figuring out what those tools are and how to apply them in your life is hard. Find your tools and embrace them. And above all, remember we are warriors.

What lessons have you learned from dealing with a disease such as MS in either yourself or a family member? Do you know a child who has a parent with MS? Take a minute sometime to recognize them for what they are- a warrior.