Shoe Me Your Strength

When Mom got diagnosed with MS she had to get some special shoes to help with her walking.  As you can imagine they aren’t exactly a designer shoe.  To put it bluntly (which I don’t think I have ever done when talking about her shoes), they are glorified black velcro shoes.  They are also a necessity for Mom’s life.  They get the job done which is helping Mom stay balanced.  But no matter how fashion conscious a person is that is tough.  And Mom loved, still loves shoes.  Cute little sandals in the summers or boots in the winter or even going without shoes around the house.  These were now all things of the past.  Her shoes, these shoes are a necessity now. 

That being said, we try to focus on other fun accessories for Mom that will make her feel like a million bucks.  A trendy purse to have set out even though she has a walker or some beautiful jewelry.  I know people would say it’s not that big of a deal not wearing cute shoes but I doubt they’ve ever really thought about it.  Never really thought about a simple item of clothing that seems irrelevent having that big of an impact on your everyday life.  How would you feel if you were dressed head to toe in a beautiful formal gown and then had to put on a pair of black velcro sandals?  That was Mom on my wedding day.  A day that was as big for her in importance as it was for me.  Her gown was a little extra long and you never noticed her shoes.  She looked beautiful.  But she knew she was wearing those shoes.  She knew.   

You have to be a strong person to put on these shoes and ignore them, especially in a society so focused on appearance and fashion.  Putting on these shoes is not for the weak.  Mom may not be able to run a marathon but I bet she is stronger than any marathon runner out there.

Music and Me

I by no means consider myself a connoisseur of music or would I even say I have good taste in music.  In fact, I am often made fun of for my taste in music.  My tastes range from pop to country.  Usually the faster and more upbeat, the better.  Sometimes I enjoy slower songs I can relate to the words.  I love the disco era and often believe I was born in the wrong era.  I like music I can dance to and music that brings me up.  I also like songs I can relate to with an occasional slow tune. 

I think I get this from my family, specifically Mom.  We are a dancing family.  I love to dance therefore I love music I can dance to.  Recently there have been a couple songs I have been really into for different reasons. 

One Direction “What Makes You Beautiful” In case you don’t know who they are, meet One Direction, the new boy band sensation.  As a person who was a full blown New Kids on the Block, Back Street Boys and NSYNC fan, One Direction just represents all that I love about music.  And all that I typically get made fun of for music.  As this band played on Saturday Night live this past weekend Sister K and I staged an impromptu dance performance in the living room while Mom sat in the ktichen laughing at us.  Mom had been in pain from her spasticity so it felt good to see her laughing so hard and to be the reason for that laughter. 

Maroon 5  featuring Christina Aguilera “Moves Like Jagger” When I heard this song and Sister K began declaring she wasn’t as into it as I was, I knew there was someone who would be, Mom.  It played on tv one night as I introduced it to her for the first time. Now whenever she hears it in the car, we refer to it as Jagger and she even has Dad into it.  She’ll be sitting down using her hands and singing the words to dance along.  We are working on a coordinated routine between us that involves sitting.  Thanks to music and songs like this I know for a few minutes she’ll be happily lost in the song with her mind absent of stress and body absent of pain.

Blake Shelton “God Gave Me You”  I have heard this song several times.  I’ve heard it on country stations and on Christian radio stations.  Everytime I do I think of someone different in my life- Husband, Mom, Dad, Sister K- I think of family.  It is a song I can get lost in. It makes me pause and reflect.  It makes me be present.  It makes me thankful for the people I have in my life even when circumstances aren’t exactly as I wished they’d be and I can always work on being more thankful. 

Are there any songs you relate to right now for silly or serious reasons?  Any memories you have tied to songs that always bring a smile to your face?  Do you also agree I have bad taste in music like most other people in my life? 🙂

Finding Strength

I am 27, my sister is 25.  We are handling a situation with our Mom that most people our age will not handle for another 20 years or so.  When they do their parents will most likely already be grandparents.  Sister K and I barely know who we are as adults.  We are still trying to settle into being adults, still trying to deal with the life changes that occur in your 20s post college, still trying to figure out who we are and how to function in this world.  I have been married just about a year and a half and am still trying to figure out being married.  Sister K is working on her Masters degree and looking for jobs.  But we aren’t having a chance to completely process all of these changes in our lives.  There’s not a lot of time to deal with it or a lot of space in our minds.  Instead we are being handed the ultimate in responsibility people go through in life, caring for a sick parent.  We are watching Dad become a caregiver at a time when we thought we’d be watching our parents travel the world.  We are seeing changes in our parents’ lives, seeing changes in them as people and seeing the changes in ourselves. 

Sister K and I argue about the best approaches with Mom.  We defend different issues.  We take turns defending Mom, defending Dad, defending life, defending our approach.  We are trying to get on the same page, really any page we can figure out.  Most of the time we find a page, but we aren’t perfect.  We both still feel like kids.  In a sense we are.  I know we are 27 and 25 but we both feel like we are only 7 and 5.  Mom was supposed to be immortal.  If issues like this were going to arise we thought we had many years until they did.  We have been handed a circumstance that would shock most people if they knew everything.  But they don’t.  We deal with most of it on our own.  Together, but on our own. 

What have I learned in all of this?  Sister K is the greatest gift I was ever given.  The gift of not just any sister, but my sister gives me strength in all of this. There is no way I would survive this without Sister K.  I am aware of that everyday.  She is the only person in the world who truly gets what I am going through.  She understands every issue, every fear, every thought becuase it’s her Mom too. In moments where I look at who we have become and our relationship, I wonder if God has been preparing us for this moment our entire lives.

I Want to Scream

I feel overwhelmed. I feel frustrated. I feel upset. I feel mad. I feel hurt.  I feel so many things that my initial reaction to them is to ignore them.  I like to think I am pretty good at dealing with problems head on but this one won’t go away.  There is also no end in sight.  It’s a problem that I can’t discuss with many people nor do I want to discuss it with many people.  My mom has MS and it sucks.  It absolutely sucks.  I can’t get a handle on it.  I can’t.  I am admitting it.  I don’t even know where to begin to get a handle on it because it is constantly changing.  There are new symptoms, new emotions, new issues to tackle, constantly new.  They also aren’t my symptoms.  They also aren’t symptoms I totally understand.  They are new terms and phrases.   MS also brings decisions that aren’t mine to make.  They are Mom’s to make.  I have no control over a situation that is infiltrating every ounce of my life.  My lack of knowing what to do is driving me crazy.  I literally sit as my head fills with thoughts and have no idea what to do.  I just want to curl back into my shell and do nothing.  I just want this to go away. I just want to scream.

Looking Forward

Today I am excited.  I am excited as I always am to be going home.  But today especially because we are all piling into Sister K’s car and heading home to celebrate Easter weekend.  I love this time.  Time spent in the car with just Husband, Sister K and me.  Moments of laughter, usually courtesy of Sister K, teaching Husband about Back Street Boys or NYSNC, or sometimes even deep conversation that surprises us all.  We have become quite the trio since I got married and that’s in large part thanks to Sister K.   

Another reason to be excited, today I get to see Mom. A big “Mom hug” awaits my arrival.  The kind of hug that makes everything better.  Looking forward to a weekend of laughing and talking and teasing Mom as all sisters do.  A weekend with my favorite people.  A weekend with my best friends. A weekend with family. 

Mom, Sister K and I have big plans for shopping Target to be exact.  Sister K and I are trying to think more outside the box than our usual mall spots because Mom is more relaxed and able to do more when we go somewhere that offers scooters.  Target is always a great option.  We’ve always found a way to get lost in Target for hours and leave with lots of things we don’t really need.  Plus have you seen this Target commercial ….it just makes you happy.  It also makes me want to go buy lots of bright colored clothes.  I emailed it to Mom and Sister K to get everyone pumped up for our weekend together. 

So today I am looking forward.  Looking forward and feeling happy.  Wishing everyone a very Happy Easter Weekend!

Get Mad, Get Really Mad

“That’s so annoying.”  Those were the words I found myself saying to Mom today on the phone while she talked about an issue she was having with her ankles today. 

As I was talking to her, something happened.  Instead of trying to solve her issues or getting sad myself, I told her “that’s so annoying, Mom.”  And I just kept at it, like I was talking to a friend who was having a whole bunch of bad luck.  Taking the MS out of the equation.  I chimed in with her frustration and you could hear how frustrated I was for her in my voice.  Strangely enough, I think it helped.  In that moment I was on her side.  I wasn’t saying you should do this, you should try this, Mom it could be worse.  Instead I was on her side and I was mad at MS for her.  I was mad at life for her. 

If I think of when I am having a period of bad luck and people tell me “it will be okay”…sometimes you just really want them to get mad with you.  Show you that you’re not alone and your feelings are justified.  As a self proclaimed “problem solver” I have a tendency to try to fix these things before I allow myself to sometimes really understand what someone needs.  Sometimes people don’t need a solution, they don’t need a positive spin, they just want someone to get mad at life with them.  Without knowing this you actually help them more by not trying to fix their problem than fixing it. 

So today I got mad at MS.  I got mad with Mom.  We chimed in together about how this is so annoying.  How much this sucks.  How Mom just can’t win.  It felt good. 

Lesson learned: I think I will get mad at MS more often.

Being Present

Today I am trying to be more present.  Live in the here and now.  Not allow my thoughts to drift to the future or to the past. 

As a declared planner this is hard for me. I like to plan the future and make plans for it.  I also like to think, and rethink a lot.  But in training myself to be present in my thoughts I can also be more present with thoughts about Mom.  I can refuse to let my mind wander off to ideas of where MS may take us, therefore making me scared.  I can refuse to let my mind wander to memories of my past with Mom before MS, therefore making me sad. I can wander in the present and might find it’s actually more fun than the past or future. 

 

Struggling and Understanding

Mom has developed trouble with a symptom called spasticity in her legs.  I don’t exactly understand what it is or means.  The only thing I do know is Sister K and I like to do a funny accent to make Mom laugh and say “spaaasticity.”   I did some scholarly research which amounted to googling and found this at the National Multiple Sclerosis Society website. I don’t know much about spasticity but I know when Mom is having issues with it she describes it as tightening and occasional feelings of shocks sent through her legs. 

I think her use of the word “shocks” is interesting because it is also a good word to describe how I feel about this too.  Shock because MS and the symptoms that come along with it are never ending.  Everything I read, everyone I talk to has a new one that I never knew existed.  No two people experience it the exact same way.  Personally, I hate this part of this disease.  I think it makes coping with it more difficult because there is no way to predict what will or won’t happen to Mom.  There is no direct path of what usually happens or which symptoms usually occur.  There are some symptoms Mom doesn’t have and others she has had for awhile.  Will other symptoms surface later or is this as bad as it could get?  All these questions make researching and reading scary too.  It makes it scary because sometimes I enjoy living in the “dark” on big issues like this.  So I struggle.  I struggle because people tell me to do the research and get informed.  I struggle with how to find a balance between the known and the unknown.  One of which is scarier for me than the other.

One thing I can do though is try to understand.  When mom talks to me at lunchtime and starts opening up about how she is feeling on a particular day I ask questions.  I try not to ask general/basic questions but specific questions.  What does that feel like, describe it to me, does it hurt, etc.  I am finding that by asking her these it is also getting her to talk about her MS and giving her a way to vent about it.  It is also making me more aware of what is affecting her.  I used to be inclined to think she was exaggerating things or making them sound worse.  I had a tendency to brush off her comments about not feeling well and change the subject.  I am not proud of that but if I am going to be honest it is true.  In trying harder to understand the specifics of Mom’s symptoms I hope to be able to help her through them better.

A few weeks ago when Mom was visiting we were hanging out at Sister K’s apartment and her lower back was really hurting.  In the past I might have just brushed this off but I really sat and listened and thought of ways to help.  I remembered my chiropractor is always telling me to use ice- 10 minutes on, 10 minutes off.  So I got up and headed to the fridge where I found a frozen bag of vegetables I knew full well would never be used by Sister K.  So I came back and put the ice behind Mom’s back as she sat on the couch.  For the rest of the evening while I was there I was taking it on and off to help her.  She later said it really helped and she felt so much better. It made me feel good because I knew I had made a difference in helping to ease her feelings of pain for an evening. 

I can’t help all the time but if I can every once in awhile it will make a big difference in helping not only Mom but also helping me not feel so helpless in our fight against MS.

25 Things

As I write this blog about my experience dealing with Mom’s MS I am showing a glimpse into our relationship.  But this is a relationship that has existed for 27 years and is in no way rooted in memories of Mom having MS.  Thinking about that fact I came up with 25 things (based on the popular 25 things on facebook) I want to share about Mom and me that are unrelated to having MS:

25. We met for the first time in Europe.  I was born in Heidelberg, Germany where Dad was stationed in the Army.
24. Since I am the oldest I lived 2 1/2 years of my life having Mom all to myself.
23. Mom loves to dance just like me.  She danced in our dance recitals when we were little in an adult ladies class and when I was 7 we did a Mother/Daughter routine together.  I thought I was so cool.
22. Mom and Dad went on glamorous dates when we were little.  I remember them leaving in tuxedos, military dress uniforms and Mom in beautiful dresses and jewelry. 
21. When Sister K and I were little we did baton twirling.  Mom would help us practice our routines, recording music on cassette tapes and counting for us during practices outside in the backyard.
20. Mom let us take over the living room with our toys and our “dining room” was Barbie Central in our house.
19. Mom was the one who always pushed me when I was scared.  She pushed me on a plane to Washington, DC when I was 17; She pushed me into my dorm room when I was 18; She pushed me on a plane again when I was 21 to study abroad in Europe for a month.  She never shed a tear in front of me for any of this but Dad said she always did once I was gone. 
18. We had an amazing trip to San Diego one time while Dad was working at a conference there.  Mom, Sister K and I explored the city together not knowing where we were or and making up plans to see things as we went along.
17. Mom was room mom for my class every year in elementary school.
16. Mom attached all my sequins for dance recital costumes on with a hot glue gun.  She believed you could solve all of life’s issues using a glue gun. 
15. Mom threw some great birthday parties for us at Chuck E Cheese.  
14. Mom loved and still loves to buy us clothes.  We love this about her, so does her VISA card.  
13. During my wedding Mom was my biggest cheerleader.  She flawlessly planned it all.
12. I bought the wedding dress that made Mom cry.  That’s how I knew I made the right decision.
11. Mom loves silly stories.
10. Whenever I have a story or comment to share I know I can always call Mom and she will laugh and listen.
9. Mom is our biggest role model.  For Sister K and me the only reason we ever did certain things was because Mom did.  
8. Mom drove us everywhere in a blue Dodge Caravan.  We practically lived in that Caravan my entire childhood.  
7. Mom and I love to watch chick flicks.  No matter how cheesy, movie theater or tv, we love them all. 
6. Mom’s friends love her.  They want to be around her and include her in whatever they do.
5. Mom is always the best to cuddle with on flights.  That’s probably why Sister K usually always sits next to her.
4. Mom makes us listen to Christmas music nonstop when it’s on the radio at Christmastime.
3. Mom is thoughtful and always gives thoughtful gifts.  She loved making us care packages at college, buying us treats to take back after a visit home and even buying us a Christmas tree for our college dorm rooms.
2. Mom, Sister K and me are best friends.  You mess with one of us you mess with all of us. 
1. A hug from Mom makes everything better.  Always has. Always will.
 
I wrote these things down because I need to remember them.  I need to focus on them.  These things describe Mom and they have nothing to do with MS.  These are the stories, the memories, the moments that we have shared and continue to share that have molded and created our strong bond.  I need to focus more on who Mom is without allowing MS to cloud my every thought associated with us.   Because at her core she is not Mom with MS she is just Mom.  Mo