Feeling Hopeful

Posted on by
4

It’s okay to feel hopeful. I think I struggle with that sometimes. I struggle because I watch the reality of MS and how it conflicts with my hopes for Mom’s MS. I don’t want to “get my hopes up” but I also don’t want to live in a state of doom and gloom on the topic. My feelings come and go in waves. I go back and forth. Sometimes I go back and forth in the same day.

Mom started physical therapy again today with the therapist who is coming out to our house- going to call him Coach C. He is the same therapist Mom used in physical therapy so there is already a relationship there and we think that will help Mom to not be so negative about the experience. She genuinely likes Coach C and I have noticed that is the biggest hurdle of all with getting Mom to be into any new idea.

Similar to the beginning of most most new treatments, I feel hopeful. I don’t know what I am hopeful for exactly but just hopeful. The initial goal is to get Mom back on her old walker Pinky. Then I think we can all breathe a little easier and take it from there. My feelings of being hopeful could all change very quickly. It doesn’t seem to take much. One bad phone conversation and I am back to reality I feel like sometimes. But for the moment I am going to enjoy feeling hopeful.

How do you handle feeling hopeful even though you may be disappointed? Do you tend to lean more towards the glass is half empty or half full? How do you pursue a hopeful attitude during moments of uncertainty? 

Don’t judge me but…

Posted on by
2

Would you believe I am afraid of the blender? Not a lie. I am afraid of most major kitchen appliances and since I got married I am also now the owner of most of these kitchen appliances. Why would I register for them if I already knew I was scared and never going to use them? Because your wedding is the only time you have the opportunity to get these items and that’s what you are supposed to do. For instance here is a list of items Husband and I now own that I have yet to use after almost 2 years of marriage because I am afraid of them: blender, waffle maker, KitchenAid mixer, and food processor. The last two really freak me out. Go on, laugh or judge.

In the past day I have been thinking about why I don’t just jump right in and figure these things out. They can’t be that complicated to use. What is holding me back. Why do I even have this silly fear in the first place. I realized I have inherited this from Mom. In Mom’s own way she avoids things she is uncomfortable with…and with her MS this has been a big issue. I realized this especially last Saturday when she admitted herself she is pretty much avoiding dealing with MS. But the point is whether it is a big issue like MS or a small one like kitchen appliances, I am doing my own dance with avoiding. Avoiding the unknown, avoiding failure at using these, avoiding having to figure them out. They aren’t something I am comfortable with and in large part because I don’t come from a big family of chefs- kitchen appliances were not readily used a lot growing up. I don’t knock that. In a similar way I have realized Mom’s family growing up was not very aggressive about health issues. It all contributes to fear and being uncomfortable dealing with the unknown.

The point though is I am seeing random qualities in Mom’s handling of bigger issues like MS that may have begun on a smaller level, for example say in the kitchen. I know children pick up traits of their parents. They just do. Sister K even has her own levels of avoidance involving other things in her life. One of mine just happen to involve avoiding kitchen appliances.

I don’t want to phrase this as I don’t like this quality and want to change because I was given this quality somehow from Mom. By knocking this trait I am knocking her and that’s not what I want to do. But in wanting to be different from your parents is that wrong? Is that insulting? And how do you even go about doing it when it is all you know? When the person you could ask for advice to begin with is the person who you most likely got this trait from? I don’t know. But I know I should probably try. And I should probably start by attempting to use the blender.

Are there qualities you have inherited from your parents for good or bad? Do you ever seek to change things about yourself? When you are afraid of something do you dive right in to tackle it? Do you think it is absolutely insane I have a fear of kitchen appliances? Did you register for things when you got married that you have never used?

The Kitchen

Posted on by
1

Our kitchen in my parent’s house seems to be the backdrop for all the serious family discussions we have ever had. They don’t take place on the couches in the living room, we never use the dining room, occasionally when we were younger and in trouble we had to go talk to my parents in their bedroom, but the kitchen has always been where all the action happens. It is where our family plays out. Where we eat, where we laugh, where we have spontaneous dance parties, where we yell, where we fight, where we make up, where we celebrate coming home, where we say good bye to our parents- it all takes place in the kitchen.

So Saturday night it only makes sense that when we needed to have a serious discussion with Mom, it took place in the kitchen. It was a conversation of sorts that had been on Sister K’s mind and my mind a lot recently. I knew there were things that needed to be said to both Mom and Dad. We were concerned about Dad being spread too thin, we were frustrated with Mom’s approach to everything, in a way we believe Mom isn’t admitting she has MS. She admitted that to us in so many words as we were discussing it Saturday night. It was a heated discussion. It was tough. A lot was said. I can’t even really remember all of it. Mom was very upset by the time we were done. She went to bed crying and didn’t sleep a lot. I don’t think any of us slept a lot. To say it again, it was a tough conversation.

When we were done, Mom and Dad left the room to get ready for bed. I stood in the kitchen with Sister K pouring myself a glass of water. She started crying. I gave her a hug. I didn’t cry though which was surprising. I did feel a surge of emotions though. I am sorry this had to come to this- I am sorry these thoughts have been brewing inside of our heads and we had to talk about them like this; I am sorry they couldn’t be solved without a big conversation like this; I am frustrated Mom and Dad haven’t taken the initiative to solve these issues without a big conversation like this; I am sad we made Mom so upset; I am sad Mom is so sad; I am nervous about what the future holds; I feel relief knowing I got a lot off of my chest about everything; I also feel worried we don’t know what we are doing or how to handle this; and, I still feel confused as to why all of this is happening to us. Why us. Why my family. Why can’t this all just go away. Where is all of this heading.

In 24 hours we had gone from having the best moments with Mom to having the worst moments with Mom. In the same way that the memory of our wonderful day will always be there, so will the memory of one of our darkest discussions. I think the reason it was so tough is because Mom just kept saying she had no idea we felt this way. Part of me thinks that may in fact be the case. If she isn’t admitting she has MS then she isn’t admitting any of these other issues exist. This is what we are facing now. But I reminded myself and reminded Sister K, if we didn’t care about our family we wouldn’t have had that discussion. We would’ve simply walked away from it all. We wouldn’t be fighting with our family for our family. We would have given up. We wouldn’t care anymore. And that is a situation neither of us could imagine.

Was there a resolution to all of this? Not really. Do I know if it will do any good? No I don’t. But what I do know is Sister K and I don’t feel this enormous weight of things left unsaid. Not making Mom aware of our fears regarding Dad and the stress he is under and not making her aware of the fears regarding herself. I don’t know where it will all head from here. That is where I realize even more so that none of this is in my control. The only thing I can control is my faith. It’s my faith that is going to give me what I need to get me through this. That and a kitchen that has seen my family through the smiles and the tears of my life. Our kitchen is like an old friend. It believe in us, believes in our family. I believe it knows we will get through this, that we will soon gather there again to laugh and commisserate as we continue to deal with all life throws at us, whether it is MS related or not.

Is there a room in your house that serves as the backdrop to the majority of your family moments? Do you have any experience confronting tough issues with loved ones? Would you believe we are not big cooks in my family even though we spend the majority of our time in the kitchen?  

“Ladies who lunch”

Posted on by
4

A rollercoaster weekend. I am beginning to think I might slightly live a rollercoaster life. My weekend at home was filled with the highest of highs and the lowest of lows. Friday was lovely. Saturday night was tough. Sunday was a day of recovery. In that sense it was like a rollercoaster. Started out climbing the big dip, then fell down the big dip and then recovered on an easier curve.

Friday Sister K set out on a mission to have a wonderful and fun day with Mom. A day in which MS is there but not the center of attention. A day in which we focus on our relationship with Mom and what it has always been instead of focusing on the stress it is under at times. We wanted to have lunch and go shopping. Thinking through this there may have been a time where we would have gone one place for lunch and another for shopping. We realized the less we had to get Mom in and out of the car the easier everything would be on her and the more relaxed she would be. So we decided to have a delicious lunch at the Neiman Marcus cafe. Sister K and I ordered mimosas to celebrate the occasion. We settled in and all referred to ourselves as “ladies who lunch.” There was fun conversation but most importantly we were having a memorable day- just Mom out with her girls. Like she has done so many times before and like we fight so hard to continue to do. After salads and dessert we headed to shop- Forever 21 and Loft.

Forever 21 made me laugh. Sister K loves Forever 21. I do find good deals there on clothes but I can’t stay in there very long- the store stresses me out. But after selecting some tops/jackets to try on Sister K and I found a corner in the store that wasn’t crowded, parked Mom in her wheelchair and proceeded to try the clothes on over our own clothes. I laughed. Part of me felt embarassed. The other part of me didn’t care. That part of me said until someone comes over here and tells us otherwise we are going to continue layering on 3 layers of clothes and not going into a dressing room. With Mom’s MS we live by our own rules now and the rules we live by are all centered around what is easiest for us as far as Mom is concerned. It’s time I really begin to focus on that and not my embarrassment I am prone to at times.

Then we headed to Loft. It was almost like night and day. We wandered around the store collecting clothes to try on. We had them strung on Mom as she sat in her wheelchair since we needed our hands free to push. It was another sight to see. Loft was so accomodating and gave us a huge handicap accessible dressing room. Sister K, Mom and Me in a dressing room has always been a hilarious time and this proved to be no different.

It was a day of lunching and shopping. A day of doing our favorite activities we have always done but modifying them to fit our current situation and needs. I realized things are not going to be the same they were. Activities take more planning and more thought. They require more coordination in the moment. It wasn’t as stressful of a day as I think I had envisioned. I think the fact that Sister K and I were there together helped a lot. We tend to be a calming force for each other lately. But the main take away that I continue to need to be reminded of again and again: Mom is still Mom. Our mother/daughter relationship is still there. And because I know how these moments don’t come around everyday I know to cherish the memory of our “ladies who lunch” shopping day more than I might have before. In my mind it was a perfect day with Mom. A day which the puzzle pieces fit together perfectly. A day that in my heart I didn’t want to end.

Have you ever shared a perfect day with someone you didn’t want to end? Do you cherish memories of these days or tend to take for granted they will happen again? Ever felt a rollercoaster of emotions in a small 3 day time period? More on that later this week.

Dad’s Challenge

Posted on by
2

Sister K and I are going home tonight to stay with Mom because Dad is out of town on business overnight. Originally it was just going to be Sister K going tonight and me going down tomorrow. Long story short of not wanting to each be driving cars down on separate days I decided to go this evening too.

Dad called the other night to talk about our upcoming visit. Last weekend, Sunday to be exact, I had a rather big blow up with Mom. I don’t know how it got so out of hand but it did. It was not one of my shining moments. She was mad, I was mad, and there was no resolution. I literally said good bye to my parents and got in the car to drive back here. I have never done that. I still don’t feel right about it but at the same time I was feeling very trapped, frustrated and at a loss for what to do next. I knew I had snapped. I also knew it wasn’t all my fault. But my family is not one to hold grudges and play the blame game. So I apologized later and we moved on.

But when Dad called he referenced the argument. He then used his “Dad tone”- very straightforward, kind, and respectful….a way that makes you listen without getting defensive or mad, a way that makes you realize the severity of a situation without getting scared…it is an art that after raising daughters for 28 years he has down to perfection. His words went something like this: 

You Mom is sick. I am asking you to have unconditional love for her the same way she has for you all these years. I know it’s not going to be perfect. I know the house is an absolute mess right now. I know there are a lot of frustrations with Mom. But I am asking that when you come home this weekend to come home and just enjoy Mom. Enjoy your time with her. Don’t focus on the other things. Just focus on Mom. Because it really hurts her when you fight. I know she fights back but I know it hurts her. We don’t know where all of this is headed. So wouldn’t you rather know you enjoyed the time you had with her now while she is at a point where you can still do things with her rather than fighting about all these other issues. I know there are lots of frustrations and I hear them and I am doing everything I can to fix them. It’s just taking some time. But when you and Sister K fight with your Mom then I have to get involved and it wears on me. I realize this is in large part because of what MS is doing to your relationship because we never used to have these issues. The point is I am asking you to just come home and enjoy Mom.”

The above wasn’t said in a mean manner. I wasn’t upset once we were done talking. It was simply a matter of fact discussion. Discussions we have had many times before. Another one that stands out in my mind involved a college “not boyfriend/boyfriend” that Dad told me it was time to kick to the curb. It was 8 years ago but I still remember it like it was yesterday. But these are the kind of discussions where Dad speaks and you listen and understand. And you think about his words. And you let them seep into your mind. And you know you need to find a way to intertwine his recommendation into your actions. In my family when Dad speaks, we listen. This is not at all in a drill sergeant manner but in a my Dad means the world to me and I want to do right by him manner.

So in so many words that is what I will be trying to do this weekend. Not get frustrated by the other issues. Not get overwhelmed by our messy house or other things of that nature. I will just enjoy Mom. And come Monday I will tell you how successful I was at putting everything else aside.

I know it is a day early but have a nice weekend. Want to join me in my challenge? Try not to sweat the small stuff and focus on enjoying your loved ones this weekend.

Golden Memories

Posted on by
Reply

I am still on quite a high from last night’s big gold medal victory by Team USA Women’s gymanstics! I managed to stay off twitter, facebook and any websites that may have leaked the results early because I wanted to watch and be surprised when it aired on tv. It was great. Such a feel good moment. When the announcers referred to the Magnificent 7 who won in 1996 I could remember everything about that evening. Dad, Mom, Sister K and Me all sat in the living room watching as Kerri Strug nailed her vault to clinch the win- I remember standing up and screaming out of excitement.

This is also another Olympic memory that brought with it another moment of reflection on the past. Thinking back to 1996. I was 12 years old. Sister K was 9. We were still living at home. Only a family of 4. Also having no idea what the future held. Here it is 2012. And things are a little different now. Mom has MS now. At 12 years old I am not even sure I knew Multiple Sclerosis existed and now it is very much a part of my daily life.

Last night instead of celebrating in the living room with Mom and Dad, we celebrated over the phone. I now have a new memory associated with women’s gymanstics winning gold and in 4 more years it may look even more different. In the same way that every 4 years the players may change at the Olympics but the events remain the same, the spectators and fans around the world also change. I don’t know why the Olympics has me thinking about the passage of time so much. I think Mom’s MS has something to do with it. I think comparing memories to the past also has something to do with it. But the lesson I am learning in the process is to cherish every memory- the past and the present because you don’t know what memories of the future will look like. I sit here and wonder what things will look like 4 years from now as I watch the 2016 Summer Olympics and the next Women’s Gymnastics team compete.

Do you ever think about memories of specific events of the past and compare them to the same events today? Did you watch the Fab 5 win gold last night? Where were you in 1996 when the Magnificent 7 won the first women’s gymnastics Olympic gold medal?

10 Pages of Fun

Posted on by
Reply

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

Posted on by
1

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

Posted on by
Reply

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

Posted on by
Reply

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?