Monthly Archives: August 2012

I believe in…

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I believe in the power of prayer and I believe in the power of a Mother’s love.

One of the greatest blessings I have is my Mother. This is also one of the reasons I struggle with this disease that is impacting her life so strongly. But I also know beyond the walker and beyond the MS, at the core of who she is, she is my Mom.

Today I am kind of down. I called Mom to express these various reasons with her. It was instinctive really. I felt down, I needed to talk, I called Mom. I called her as I was walking to church on my lunch hour. We talked and she listened. She encouraged and through her voice I felt the presence of her love. Her ability to somehow help me know everything will be alright. I then went to church and prayed. 40 minutes after the start of my lunch hour I felt better. I felt uplifted and I had a more positive perspective.

The Lord gives us Mothers for a reason. I also know he gave me my specific Mom for a reason too. Today I put the two hand in hand, leaned on both of them and this afternoon I feel like everything is going to be okay. My problems aren’t solved, but I do have greater peace of mind. A greater piece of mind I hope to continue and reflect on during this long weekend.

Who or what helps you through a tough time or a tough moment? Who do you call when you need to talk? Wishing you a safe, relaxing and happy holiday weekend!

Reply All

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This morning I woke up to 10 emails between Mom and Sister K that I was included on beginning at approximately 11:00 last night and ending at 11:30. I was laughing as I tried to decipher how the conversation had gone, the path it had taken and the change in subject over the course of the emails. The silly, pointless, unintelligent conversation. Husband thinks my family can do this like no one else…I am not sure if he means that in a good way or bad way when he says it..

But I have to commend Sister K here. She has a way of sending emails full of spunk, energy and happiness to get Mom out of a funk. She makes them silly and simple and repeatedly calls all of us best friends.

Since my family is going on a cruise next summer we have decided we are going to have “Cruisemas” this year for Christmas. Everyone is thinking of cruise related gifts to buy each other. Sister K is obsessed with buying the “best friends” matching tote bags. That is how the email chain began- selecting monograms, colors, fonts, and then slowly evolving to a bunch of nonsense. We still haven’t reached a decision and we have had pointless emails about this all day. Someone reading these emails might question our intelligence.

The point though is how important these emails are to us. It is impossible for us to be together all day and impossible for us to talk to each other all day. We know Mom is at home the majority of the day without much activity because of the limitations of her MS. These emails are important for her. They lift up her spirits, they make her laugh and roll her eyes at her ridiculous daughters. But they make her feel a part of something fun, every day. Replying all…all together.

One of the luxuries of the current world we live in is all of the options we have for communication. Phone calls, texting, emails, facebook, twitter, blogs, the list goes on. With Mom’s MS and the distance between us, these different methods are very helpful and important for us to use. Sister K and I will use any means necessary to bring a smile to Mom’s face and to make her feel a little happier at times. It may seem basic but it is so important. The art of communication can be the most powerful tool in helping to bring a little happiness to someone’s life- no matter how silly the communication may be.

How do you use the tools of communication to keep in touch with loved ones? Do you enjoy taking a break from real life and acting silly with loved ones? If you had to select a monogram would you pick your first name or initials?

Fighting for MS

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I have readers that have shared with me the impact of MS on their lives- those with MS, those with family members and friends with MS, those who have parents with MS. After Mom was diagnosed I immediately went to the MS Society website to begin to learn how I could get more involved in their efforts for a disease that now personally impacted me.

Sister K and I did the MS Walk one year and we really enjoyed it. It was after Mom was newly diagnosed and we wanted to participate. We coordinated our outfits with pink and purple shirts, our official “best friend’s uniform” and then showed up to discover most people were in orange as it is one of the main colors for the MS Society. I found it comical. We were so new to the impact of MS on our lives that it had never occurred to us there would be a unifying color we needed to coordinate with- now we know better.  

It was a powerful experience though. As Sister K and I drove up to see all the people out there to support those with MS, Sister K got tears in her eyes. We were filled with a rush of different emotions because we had never experienced anything like this before. We want to do more and are seeing what else is out there. Maybe someday the MS 150 but that requires quite a bit of committment and training, plus it requires the purchase of a bike.  

I am curious if you have ever participated in fundraising efforts for any purpose, MS related or for any other cause? Did you learn things after the first time you did it? Have you ever done it again?

What’s Your Mantra?

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I think life mantras are interesting. Words to live by. Sayings you tell yourself when you don’t know what else to say. They typically appear during the tough times but can also appear during the good times too. In moments where I am overwhelmed or left alone with my thoughts they tend to surface.

I was talking to Mom today about different frustrations Husband and I are dealing with and she responded by saying, just remember “good things come to those who wait.” It was a nice response but what I appreciated more was connecting with Mom over this moment and this mantra. This mantra is one that makes me think of Mom. One that she has applied to her own life and one I have seen played out in my own life up until this point as well. It was also special because I have recently been struggling to sometimes connect with Mom on the phone for various reasons, most of which I think stem from MS. Sometimes our conversations leave me feeling frustrated by my own expectations. Today though it was nice to get some old fashioned advice from Mom.

The conversation got me thinking about life mantras and my own personal ones. The phrases I repeat to myself or others if they were in need of a short tidbit of advice.

One of my favorites:
“Just breathe” -I stole this from the movie Ever After

One Husband and I learned from our sponsor couple during marriage counseling:
“Nothing is ever as bad as it seems and nothing is ever as good as it seems.”

One I started using to find humor in an annoying situation…it is now also one Mom likes to throw around now when describing her MS symptoms:
“Are you kidding me??”

One that is tough and can cause you to reflect forwards and backwards:
“Everything happens for a reason.”

I know these are all over the place but they are the first ones that come to mind. I am curious if you have any life mantras you live by? Where did they come from? How do you use them?

The Magic of the Beach

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A recharge weekend. A brief but important escape. A sunburn souvenir. These are all the perfect ways to describe this past weekend. Husband and I headed to the beach for a quick mini-vacation before he begins the 2nd year of his MBA program tomorrow. I didn’t realize how much we needed the mini-vacation until yesterday as we were heading back.

This summer has been one focused on Mom. Husband was also out of town for an internship for most of it too. I know it may sound bad to say but this helped me to balance being a daughter during that tough time with being a wife. But, as Husband and I near our 2 year anniversary in a few weeks I don’t feel any more knowledgeable on that subject than I did when we first got married. That balance is something I am still trying to figure out. Even under completely uneventful circumstances I don’t believe it is something that would happen magically overnight. 

Mom’s MS brings a level of stress to my own life. Husband’s rigorous MBA program has also done the same. Both are out of my control but directly impact my life. Just as I felt Mom’s MS may be settling down, Husband’s job interviews are creeping up indicating a stressful time for us. It’s kind of like a seesaw and I just go back and forth between the two for the time being. It is also difficult balancing that because my roles in both situations are different. On the one hand I am a daughter and on the other hand I am a wife. They are roles I am still figuring out how to shift between on a daily basis as each one can require more of my attention at certain times.

This weekend at the beach helped tie all of this together for me.  I have memories at the beach with Mom and our family when I was younger. I have memories of vacations spent at certain hotels, playing in the ocean with Sister K and eating at our favorite restaurants. It was unique to share that with Husband but also create our own new memories. It was a way to bridge my childhood as a daughter to my adulthood as a wife. It was also a way for me to enjoy both roles without the stress that can come with them. Being at the beach took me back to the basics of life. Whether you are looking out at the ocean or playing in the waves it can be a big cure for a lot of different stresses. No matter what phase of life you are at, the beach is the one place you are never too old to enjoy.

Do you have multiple roles in your family you have learned to balance/shift between? Do you have any special places you went as a child and visited as an adult with different family members? What is your idea of a recharge weekend? Anyone have any remedies for sunburns? I am hurting today and imagine I will be all week. I put on sunscren in the morning but learned the hard way you have to always reapply…

Best Friend Uniform

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I love the color purple. It is and always has been my favorite color. I remember when I got engaged one of my friend’s responded and said “time to order my purple party dress.” Yes, I had purple bridesmaid dresses. The specific color was plum. My wedding colors were plum and sage…also known as purple and green. Mom wouldn’t let me say purple and green and it reminded me of the famous scene from Steel Magnolias when Shelby says her colors are “blush and bashful” and M’Lynn responds by saying “her colors are pink and pink.”

Sister K’s favorite color actually is pink. And this has played a big role in our entire lives. Easter egg hunting- my eggs were always purple and Sister K’s were always pink. Picking out tops- Sister K would get pink and I would get purple. Birthday gift wrapping- Sister K’s was pink and mine was purple. You get the picture. And today Sister K and I have decided to embrace the silliness involved with each having a favorite color and try to wear similar outfits for certain occasions in these colors. We call it our best friend uniform. And the fact that bright colors have been so trendy has assisted us in this. Purple shorts/pink shorts, purple pants/pink pants, purple purses/pink purses. It is silly but it is fun for us.

It also brings a little bit of laughter to some otherwise tense situations. We may be struggling to get Mom in and our of the car but we are wearing our purple and pink shorts which lightens the mood or takes the attention off Mom. Our “best friend uniforms.” Outfits and colors Mom associated with each of us and continues to associate with us everyday. The best part of them is it is something Mom began when we were little kids and now we enjoy embracing it to bring back a sense of being Mom’s little girls once again. It’s a mother/daughter thing at its simplest.

Do you have a favorite color? Are you ever drawn to certain colors over others? Did your parents use your favorite colors throughout your childhood? Did you ever wear matching outfits with your siblings?

The Power of Personality

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I wish I could spend time observing and analyzing family personalities. I find it fascinating how much the personality of parents can impact their child. How siblings personalities can be so different yet so similar even though they have essentially been raised in the same manner. Then how much the personality of a person will impact who they attract in life. And the cycle continues.

I think I have become so interested in this because my family is a unique one. I have been asked by many people “what did your parents do to make all of you so close?” Or “what did your Mom do to make you so close to her?” When I get asked these questions I feel dumbfounded in a way. How did we get this way? Could it simply just be our personalities?

Especially since Mom got MS I feel at times like everything but the kitchen sink is being thrown at us. It is testing us individually and as a family on a regular basis. It can leave us questioning our actions and responses. Actions and responses that are deeply rooted in our personalities which are deeply rooted in Mom and Dad. I never realized how valuable and how much of a tool my personality would be in dealing with the big parts of life. And of the many traits of my personality, the part that’s the biggest tool against a disease that has potential to destroy my family- my loyalty. Loyalty to my family who I love. Loyalty to our relationship that I am incredibly protective of and will fight to preserve. Without that loyalty I think I might have given up several times, but I don’t. I grab hold of the people I love and together we continue to fight and figure out our new normal.

Do you think it’s interesting to think about people’s personalities? Within your family does your personality play a specific role? How do you think your personality impacts how you deal with challenges? What is your greatest trait to aid you through your tough moments?

Let Me Tell You Something About Me…

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My friend Jackie at Swerving for Butterflies who I have met in this blogging world “leap frogged me” meaning what I do not know exactly. I do know she gave me this list of questions to answer and it seems like fun to let you know a little more about me. Curious based on what you have read, if you would have predicted any of these responses…

1. What song do you never tire of hearing?
That would be “Dancing Queen” by Abba. Dad and I used it as our father/daughter dance at my wedding and it was one of the greatest moments of my life. People thought we had rehearsed a performance but we just did it on the fly.

2. What things give you the chills?
It seems everything does. I am cold natured and always carrying a cardigan around. Sister K and Husband on the other hand are naturally hot natured and freezing me with the a/c in the car.

3. What event in your life has shaped you the most as a person?
Going to college. I never realized who I was capable ot becoming socially or the caliber of friends I was capable of attaining until I went to college. Middle school and high school were tough. College in a way redefined me and redefined the confidence I had in myself. Of course it also provided a great education for myself, but the impact it had on me as a person is my big take away. (It is also where I met Husband so I guess it wasn’t too bad for that reason either.)

4. What worries you the most on a day to day basis?
Definitely Mom. I worry about her MS and the future. It has given my life a big unknown that I wrestle with on a daily basis.

5. Can you keep secrets? Why or why not?
Yes and no. But if it’s serious, always yes.

6. What do you wish you could change most about yourself? (personality)
I wish I could be more “go with the flow” like Sister K. I admire that a lot in her. My ability to be a planner and have some sort of control sometimes gets the best of me. I blame being the older sister on that quality.

7. What quality do you most admire about yourself?
My loyalty. I am insanely loyal to my friends and family. I think that is why when people “hurt me” I have difficulty getting over it or blowing it off. I would never act in certain ways like that to the people I love so I don’t understand why people do it to me.

8. When you were a child, what did you wish to be when you grew up?
First I wanted to be a pediatrician. Then I wanted to be a news reporter.

9.  Do you ever get road rage?
No I am very much a rule follower on the road. I follow speed limits and drive slow. This drives Husband crazy.

10.  If you could write a book knowing the whole world would read it, what kind would it be?
Thinking of writing one someday based on this blog. It is a secret dream of mine. We’ll see if it ever becomes a reality. Not sure how I would even go about doing it, where I would begin, who would read it, what I would write but it’s sitting there in the back of my mind waiting it’s turn.

11.  If you could filter the news you see and read, what would you want to exclude?
I am a big news fan so hard to think of eliminating it. I really do think it all has a place in our lives. But, I could really care less about sports. I don’t understand them nor do I really want to understand them. This pains Husband greatly since he loves his ESPN Sportscenter and fantasy football league. I guess yet again opposites attract.

Instead of tagging people of other blogs in this post I’d invite anyone who reads this to pick a question and answer it or answer all of them if you want. I’d love to read your responses and hope you have as much fun answering them as I did. Gives me a chance to get to know you better too. Thanks Jackie!

Done Being Polite

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Everyone has an opinion. I always knew this was true but am amazed at how this becomes even more of an issue when your Mom is diagnosed with MS. Everyone has an opinion about Mom’s MS- they have an opinion about to handle the disease, how we should act, how Mom should be treated, what we are doing right and what we are doing wrong.

I was told this weekend via someone else that a comment had been made referring to how we are handling Mom’s MS. Yes this would classify as gossip on their end and gossip on my end. I also don’t care. The comment: “Their Mom is just really not doing well and I don’t think any of them are taking it seriously.”

My initial reaction: Are you kidding me?

But as I write this, I have let it settle and I’ve given it some thought. There are a number of issues I have with this that I have been thinking about. First of all, why do people feel like they have a right to tell us how to handle our Mom? Is it because of our age? Yes Sister K and I are 25 and 28 but that doesn’t mean we are children. I personally think we have done a great job considering the circumstances we have been given and how all of this has happened. We have also been given a big choice in all of this. A choice I am not sure everyone would make the same way we are- We could choose to ignore this situation entirely and let it rip our family apart, or we could fight it. We fight it. But no one commeds us for that. They just look at whatever it is we aren’t doing.

Which brings me to another issue. What aren’t we doing and how exactly are we ignoring this? We have gotten Mom a physical therapist, she is improving little by little everyday, we are trying to keep her attitude as positive as possible but we cannot force her to do anything. I think people forget Mom is 60, not 85 with a disease like Alzheimer’s. She is still cognitively very aware of what is going on and we do not control her life. This is not a situation where you are dealing with an elderly grandparent. I am dealing with my middle aged Mom. The circumstances are completely different.

Mom and Dad are working through this together. We are all working through this together. We are doing our best. There is no manual yet everyone seems to think they have one. There is also no cure for MS. This isn’t going to magically disappear. While I am incredibly frustrated by this one comment it is really just representative of other comments that people mention to us wherever we go. I don’t understand what gives people the right to tell us what we should be doing that we aren’t already doing and why they seem to know all the answers when they haven’t even dealt with a situation like this. For the millionth time and I mean this as kindly as possible- your Mom having Alzheimer’s is in no way the same as my Mom having MS. Your 85 year old Mom is not the same as my 60 year old Mom.

I need to be more assertive when these comments are made to me. I have made a promise to myself that from now on as comments like this are made to me I am not going to just politely listen and pretend to appreciate their concern. I am going to respond in a manner explaining we are doing the best we can. I am going to respond in a manner that is not rude but also not nice. Implying I don’t want anymore advice that I never asked for in the first place.

Why do you think people offer opinions when you didn’t even ask for them? Do you think this is a lack of social skills or something greater? How would you respond? Would you be bothered by this or do you think I need to blow these comments off? Have people ever done this to you regarding issues in your own life?

Unknown Risks

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Just as I think our list of lifestyle changes with Mom’s MS is set for awhile we get a new one we didn’t expect. When I called Mom today she sounded a little flustered but didn’t want to tell me why at first. When she finally did she said, well I had put some meat on the stove to warm up and left the room to do something real quick; but, while I was in the other room I thought to myself that really isn’t a good idea because I can’t get back there quickly if needed. Nothing bad happened and there was no panic situation- Mom’s food may have been a little browner than usual but that’s okay.

But this just reminded me Mom is still adapting to her own limitations because of MS. We are all still adapting. Simple things I used to take for granted like warming up a meal are complex and come with real risks that need to be thought through. I was thinking how do we approach the risks that come with different tasks, how do we prepare for them and know what to expect? In some ways you can’t know or don’t know until after something happens. But taking some time to stop and think to the worst possible outcome of an activity can help determine what the risks are- that is just scary sometimes to think about. I can’t live life in fear but also can’t live life pretending certain risks don’t exist. Something as simple as cooking meat now comes with a risk.

It’s hard in these conversations because while it is good for Mom to process all of this it is also tough to hear the slight defeat in her voice of “things aren’t how they used to be.” I was silently very thankful this topic had come up at all in her mind. The thought of Mom cooking or what could happen if she left the room and wasn’t able to make it back had never occurred to me. It scared me a bit to think about and then scared me that these risks had never occurred to me. I have been thinking of other situations that we may be missing- while they may seem obvious to others they are not obvious to us. It just goes to show we are all still adapting as a family and still adjusting to our new lifestyle with Mom’s MS in the same way she is still adjusting herself.

Have you ever been startled when you realize something could happen that you didn’t expect? How do you deal the unknown of risks in everyday life? What does everyone have planned for the weekend? As always I am very happy it is Friday! Have a great weekend!