100% Thankful

Yesterday marked 100 Posts. This one is officially 101. This is pretty exciting. I have come here 100 times to share my thoughts and you have come here to read my words.

This blog started as a little idea that was just sitting in the back of my mind. I kept trying to tuck it away but it kept resurfacing in weird ways. I had a long conversation with Husband about it and he thought I should try it out. Sister K was in full support and thought it may help me process everything going on with Mom.

What I didn’t expect is all of you. The people who come here everyday and read. The people who come here occasionally and read. The people who have only come once to read. Knowing people are reading my words at all means so much and I am so thankful. I hope you know that your presence is not lost on me.

What I also didn’t expect was for Mom to have her first relapse mere weeks after I first started this blog. How comforting it would feel to be sitting in a hospital room recliner by myself while Mom slept knowing that I had this virtual support team out there of people I had never met. I learned the power of support over that week and the weeks that followed. 

So today’s post is for you. To say thank you to you. Thank you for stopping by and for supporting me along the way. Thanks for hanging out with me for my MSrecess everyday.

My Secret Challenge

I am 28. This is not a newsflash around here. But the newsflash is I am 28 and still want my Mom’s attention and approval. I know it sounds selfish and whiny, I know it is selfish and whiny- I want to be able to call her and have her available to talk to me; I want Mom to respond to any issues by being on my side; I want my relationship with her to remain the same. No changes.

But there has been a change. But this part of MS doesn’t bring challenges as obvious as the other changes. It’s more of a secret challenge Sister K and I get to face. It’s the the challenge of communication- especially when the primary tool we use to communicate is the phone. This challenge peers its head when I call Mom wanting to talk to her but she is dizzy and laying down because of her spasm medicine. Or she is having difficulty focusing and following what I am saying. Or she can’t help me through my problem or issue by responding the way I want.

This happened last night. I was walking to my car to drive home from work. I wanted to chat with Mom. And we did briefly but then she had to go because she wasn’t feeling well and laying down. I felt kind of defeated. Frustrated. I know this is selfish. Very selfish. But it doesn’t make the feelings go away. It’s hard that Sister K and I comment to each other when we have a really good conversation with Mom now- When she is listening and paying attention and responding and we are interacting. This used to be the norm. It isn’t anymore and it’s difficult.

But this is the side of MS not everyone sees. It’s a side that not everyone notices. Don’t get me wrong, that is good. I personally don’t want everyone to have one more thing they decide to ask me about concerning Mom. But at the same time dealing with it makes me feel alone. It also makes me feel guilty for even being frustrated with the situation given what other circumstances could exist. I know avoiding this frustration goes directly back to taking life one day at a time. The frustration of having a good conversation one day but a bad one the next. It’s tough. It’s hard to deal with because there is already little predictability with MS and I feel like all I am trying to do is grab on to something constant and predictable. Instead I am finding myself adding one more item to the list of “things I cannot control” regarding my life now with Mom’s MS. And even moreso I never would have predicted “talking to Mom on the phone” would be on this list to begin with.

Do you face any communication challenges with people in your life? How do you cope with conversations not meeting your expectations? Do you think this ties into taking life one day at a time or just acceptance of change? Do you still seek your parent’s communication and approval?

Do You Dream?

I am feeling kind of nostalgic today and not sure why. Thinking about black and white pictures of famous faces; old television shows from my childhood; my favorite movies- the fact that I have been playing around on Pinterest may have something to do with this. Have you experienced Pinterest? It’s kind of fun and can quickly become addicting. Everytime I am on it, I feel like it is a mind break. A dreaming adventure. What my dream house would look like; what a party would like that I would throw; pictures of fantastic desserts I could bake; the list goes on.

It’s an interesting mind exercise for me though because lately I am finding myself having trouble dreaming. Dreaming of the future. Dreaming of fun times. It is all just difficult for me. I am trying to take life one day at a time. How does that work when you are dreaming of the future? It also scares me to dream of the future. I get nervous to think about Mom in the future. To dream of a future party, but how would Mom attend? To dream of a future house, but how will Mom get around it? The list goes on. Pinterest packages these dreams into nice square pictures. Happy pictures. Pictures that make me smile but also bring up a list of concerns in my head.

I am trying to be hopeful. I actually feel like I am doing a pretty good job the past week. I judge my progress in this area in weeks. But the idea of dreaming about the future is still tough. Tough because it conflicts with taking things one day at a time which is what everyone tells you to do. I don’t know how to balance it, but I do know I should find a way. It is fun to dream. It is exciting to dream. It is uplifting to dream. All feelings that I need to have and need to feel.

Do you like to dream? Do you think there is a conflict between taking life one day at a time and dreaming of the future? What are your favorite things to dream about- travel, houses, parties, etc? Have you discovered Pinterest yet?

Olympic Sized Support

Can you believe the Olympics is over? I am kind of sad, thinking I am going to have some sort of Olympic withdrawal when I go home this evening and don’t have anything to watch. No more coming into work everyday asking co-workers if they saw particular events the night before, no more sitting on the couch every night cheering on the USA, no more obsessing over my favorite Olympians and following them on Twitter. It has all come to an end. In a way it is time to return to real life.

I, for one, really got into the Olympics this year, more so than I have in other years. There was something incredibly thrilling about watching the races, hearing the stories of the athletes and celebrating the victories alongside everyone I know since we were all cheering for the same team. The camaraderie. The support of a country behind you. It must be quite a rush for the Olympians.

It makes me think of myself and dealing with my own issues in my life. How important that camaraderie and support can be- whether you are on the large scale of an Olympic athlete or the small scale of a 28 year old trying to navigate the twists and turns of life. It can all come down to your performance in a particular moment. I sometimes feel the pressure of that performance in stressful moments with my family. You wait for your opportunity to say something and then you pray that when it comes you say the right thing. You pray that you are able to perform. You are also thankful for the support behind you in these instances. Even though that support team may not be present, you know they are out there. No one realizes how invaluable having a team of people rallying behind you can be until you face those big life moments- some are exciting, some are challenging, some are positive, some are negative- but the one thread they have in common is the importance of a support team in each of those instances.

How do you support your friends and family? Do you see the value of camaraderie in times of struggle as well as in times of thriving? How do you handle situations where you aren’t receiving the support you may need? Are you sad the Olympics is over? Did you enjoy cheering on Team USA every night? Did anyone else enjoy the Spice Girls performance at the Closing Ceremonies as much as I did?

Back to School

I always feel strange in August being a grown adult and watching everyone else head back to school. I know kids I used to babysit going back to school, I know friends who are teachers going back to school, but my life remains mostly unphased by all of this in August. No big changes, no big milestones, the only real impact “back to school” has on me is “back to traffic and school zones.”

But seeing as how this summer has felt very strange with everything that happened with Mom beginning in May, I feel like in a way my family is heading back to school with her recovery. She began working with her physical therapist yesterday and when I talked to her on the phone today she sounded upbeat and happy. It made me feel good. It made me feel hopeful again. It also made me feel like maybe in a way my family was coming out from our own summer break. Our summer break though wasn’t full of lazy days, pool time and vacations but began with Mom’s relapse in May and was full of overnight hospital visits, stressful moments, big decisions, and a tough recovery road.

We survived it though. We are also continuing to survive. And this August as everyone heads back to school I am reminded of how life was in May as everyone was getting out of school for the summer. As I watched people update their facebook status to reflect summer vacation, Sister K and I were taking turns staying in a hospital room with Mom. I didn’t know how it would all turn out. I couldn’t imagine August even coming because I couldn’t fully comprehend what was even going on in that moment in May. But today I can see how far we have come. We still have a ways to go but that’s just more motivation as my family begins its own MS school year this August.

Do you have anyone in your life heading back to school this year, either as a student or teacher? Do you ever think of August as marking the beginning of a new year similar to January? Was your summer full of regular summer fun or any unexpected life events like mine? Has anyone else been enjoying the light traffic and no school zones this summer?

Feeling Hopeful

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…

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

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”

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

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.