Tag Archives: daughter

Today I Am Hopeful

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Regardless of your political viewpoint, it was good to see the words MS on the cover of ABC News today.  I believe increasing awareness of MS is what is going to increase fundraising support which will in turn increase research which will in turn find a cure.  Every mention of MS in the media only helps build that awareness. 

Its been a tough week filled with tough discussions about Mom, trying to get a handle on what is facing us and trying to do everything we can.  I am trying to be more optimistic.  To hold on to hope because in the end that is all we have.  Deep down no matter how down I feel about what is going on around me with Mom there is always a spec of hope. 

Today I am hopeful.

A Clear Head

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At some point Dad, Sister K and Me have to realize Mom’s MS is her MS.  It is our battle to fight but at the same time it is not.  We can’t make her have a fighting spirit if she doesn’t want to have one.  Regarding treatments, regarding medicines, regarding our plans….we are pushing and pushing and not having much success.  The other day I had a thought- while this is our battle to fight it is ultimately Mom’s decisions what path it takes. 

We will never be able to force her to do anything. Because of that we have to listen to her.  We have to find out what her plan is and respect that even if it’s not what our plan would be.  We are all exhausting so much energy coming up with ideas, discussing plans, alternative medicine ideas, doctors, etc that we are in a sense driving ourselves crazy.  It is consuming us. 

I have tried to blog everyday but I think that’s why yesterday I had to take a break.  There may be other days when I have to take a break.  Tuesday was a tough day and night with some tough conversations with Dad.  I started to feel overwhelmed and overcome with stress from all of this.  I also felt very frustrated with Mom.  So yesterday I needed a break.  I didn’t want to think about MS.  When I talked to Mom on the phone at lunch, I didn’t bring up how she was feeling and we just talked.  It was nice. 

I think I learned a lesson, I can’t just sit and let my worries consume me, especially when its an issue that can’t be solved.  I need to take a step back and come back to it later with a clear head and a better attitude.

Gotta Have Faith

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I have to have faith in Dad.  I think Sister K and I like to jump the gun, think we know best and take over.  And we can’t.  I had a nice talk with Dad last night on the phone which he said, I need you both to trust me that if and when the time comes that we need more help I fully intend to go get it. I am not going to  wear myself out and I will know when that time comes.  He also told me that unless Sister K and I intend to go back to school to get our nursing licenses we can’t help at the level that may be needed.  That kind of made me laugh.

So Sister K and I are still working through things, we are still figuring them out but we are realizing we have to have faith in Dad.  Faith that as Mom’s best friend he’ll know when, if it ever becomes necessary, to make the decision about getting extra help at home.  He’ll know what he needs to do to take care of Mom and himself and we’ll be there to support him through it.

Just Mom

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Sometimes I think it’s good to not always focus on MS.  Mom’s MS is often a focus for us.  It somehow sneaks its way into pretty much every conversation.  It has a funny way of doing that- it’s a weasel.  A sneaky one. 

Today on the phone at lunch Mom and I just talked.  She was in a good mood, she was focused and listening. We laughed and we just talked.  I never asked about how she was feeling or how things were going today.  This wasn’t on purpose but I just didn’t think about it because our conversation was so filled with other things to talk about.

This afternoon as I was thinking about our conversation I got a smile on my face.  I was thinking of what a good conversation it was.  It’s important that not every chat with Mom, not every sentence or thought has to do with MS.  MS is important but it’s more important to focus on who Mom is without it.  Not Mom with MS but just Mom.  In my moments of frustration or sadness I forget this.  These moments don’t come as often as they used to but today was a good day.  Today I had the opportunity to allow my mind to be lost in just Mom through a phone call.  And I am thankful for the moment.

Hold My Hand

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Meet Mom.  This was taken on my wedding day.  This is our relationship.  Holding hands. Supporting each other. Sometimes you don’t need words.  Sometimes you just need someone to hold your hand.  When Mom holds my hand I know everything’s going to be alright and in this moment with a squeeze of a hand that’s what she told me. 

Now I hold her hand as we navigate the muddy waters of MS.  And without words but with the squeeze of my hand I let her know I am here.   

My Escape

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I am in the midst of reading Hunger Games.  If you need a complete escape from life that will take over your thoughts and consume you while you’re reading, this is it.  I jumped on the bandwagon and am so happy I did.  Sister K and I are reading them together.  We have tried to get Mom to but she’s not very interested.  That’s fine because it has given Sister K and I something new to bond over, as if we needed one more thing. 

Hunger Games also provides a much needed escape.  How often in life we just need an escape and we can’t exactly pack up and head to a beach everyday.  Mom is escaping these days through games on her iPad- scramble, words with friends and newest draw with friends.  Sometimes we escape through television shows and discuss them together, The Bachelor is a big family favorite.  Our poor Dad.  But the point is no matter what it is, sometimes you need an escape. 

At lunch today Mom and I were talking about friends of mine who have started to have babies.  I told her I didn’t feel ready for that and she said well I am in no hurry for that either.  Her reasoning though is different than most Moms’ reasoning or what you would imagine- she is scared.  She is scared of her physical limitations as a mother to me and a grandmother to someone else when the time comes.  She is scared she won’t be able to offer me the support I need like her Mom helped her when I was first born.  She is scared of this because it is a big unknown.  What is also an unknown is how Mom’s physical state will be when this time comes.  I told her we would just deal with that when the time comes and made some silly jokes about making Sister K come and Mom could just bark orders at her while I caught up on sleep.  And she laughed, but at the same time it doesn’t change things.  It doesn’t fix the unknown for us. 

So after we had that chat I needed an escape.  I’m not running from problems or fears but at the same time this is one specifically I can’t dwell on because I can feel my mind beginning to go crazy when I think about the topic too much.  I can feel myself get upset.  It’s hard when the future used to bring a sense of anticipation and excitement of things to look forward to for our family and now those moments have an underlying sense of fear. 

So I escape.  I have Hunger Games to thank for that escape today.  Another moment it may be a tv show or a blog. The important thing though is to escape.  I know it’s healthy.  It allows me to take a break, to refocus so the parts of the future that are scary and unknown aren’t the front of my mind at a time when it’s not necessary for them to be there.    

Do you believe in escaping from life sometimes? What’s your escape?

Fighting Thoughts

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It’s Friday and my head feels full.  Full of thoughts of the week, full of plans for the weekend, full of life.  I got frustrated with Mom last night for no reason.  I had tried to talk on the phone to her the other evening but she was too tired from her rehab classes.  I tried again last night but my Grandpa was over at our house for the evening because Dad is out of town. I was frustrated.  Husband said I was being too hard on Mom.  Sister K said I needed to relax.  It was just hard.  Knowing I needed to talk to her but she was tired and then she was busy.  Two days in a row.  But now here I am.  About the same time on a Friday afternoon feeling a similar way and I am only tired from a work week.  Not from a rehab class, not from trying to get into a car without falling, not from pushing a walker everywhere I go.  No, I am just tired from the work week.  Mom has all of this to deal with everyday plus thoughts.  Thoughts about MS.  Thoughts about her daughters.  Thoughts about life. 

Mom is still the same Mom but she does have a couple extra things going on inside of her mind.  A couple extra things to worry about that are really not that little.  They are actually bigger than I give them credit for.  I don’t even know the full extent of what she worries about because I don’t know her innermost fears and thoughts. 

So on this Friday as I sit here tired with a full head of thoughts, I think of Mom.  I think of how I am blessed by the way she tries her hardest to keep up with us but sometimes she just can’t.  I need to learn to recognize that.  I think about ways I need to be more understanding in those times.  I need to not be so hard on her and realize she is fighting to be Mom and fighting MS all at the same time.  I need to not give her something else to fight with like me. Instead I need to learn how to fight my own thoughts.  I need to fight to be more patient.  I need to fight to be more understanding. I need to recognize this is part of my mom has MS.    

Have a Happy Friday and a wonderful weekend.  Hope you take a second to fight your own negative thoughts, whatever they may be.  Thank you for coming here and reading this week.

Shoe Me Your Strength

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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

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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? 🙂

I Want to Scream

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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.