This is Us

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6.16.12 This is a visual into Father’s Day. A day of relaxing and fun and enjoying our time together at home. In a way this is a visual of how we live with MS.

Mom sitting on the patio chatting with Sister K. Next to her you can see our spoiled dachsund Lucy floating on a raft as Dad swims by.

Dad, Papa and Me devising a dinner strategy. Dad pouring drinks, Papa grilling and Me bringing out our not so homemade side dishes. 

Here is a glimpse into my family. A glimpse into our spirit. A glimpse into where it comes from and the energy it gives us. Energy that keeps us laughing and keeps things fun. Our high maintence dachsund who enjoys floating on a raft. My blue mumu dress seen on me above. Dresses that Sister K and I have recently started wearing when we are hanging out at home. They add a festive element to whatever we may be doing regardless of it being Father’s Day. Mom’s mailbox- the name I have given the basket attached to Mom’s new walker “Walkie” because it carries things around for her. 

These things may seem dumb. They may not even be funny to anyone else but they symbolize the heart of my family. They are silly but important moments that keep us laughing and prevent us from taking life too seriously at times. Because at times the topic of MS is serious. It is so serious it can become overwhelming. It can bring us down. Instead we use these small things to keep us laughing, keep things light and keep our energy up. That walker in the picture above, a walker I was nervous about entering our family at one time- it may seem odd to say this but it is right at home in the middle of our family. Something we accept and look past with a smile. But I am proud because to me these pictures show we are still the same family regardless of MS- craziness and all.

Does your family do silly things to keep the energy positive? How have you adapted to changes in lifestyle because of MS? Do your dogs float on rafts?

A Grateful Tuesday

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I have had an outpouring of support on my blog today that I have not seen before. I am so thankful. I owe a lot of that to my regular readers out there. I also owe a lot of that to Patrick at Caregivingly Yours for the wonderful post he wrote about my blog today. A blog that has become more than a blog to me. A blog that has become a safe place to share my feelings, express the tough moments and remember the importance of the fun times.

When Mom was diagnosed with MS I headed straight to google. I am from the Millenial Generation meaning all of my problems and questions are supposed to be solved via google. But for the first time I couldn’t find what I wanted. I would google my mom has ms, help my mom has ms, what do I do my mom has MS, how do I cope with my mom’s MS and I could never find what I wanted. What did I want? I wanted to find someone I could relate to. I wanted to find someone who was similar to me. Someone who was close to their family, someone who understood the impacts of this disease on a family but also someone who was dealing with it. I wanted to know how they got through it? What did they do?  Had they ever felt the way I did? In a sense I wanted a manual. Because like the phrase at the top of my blog says, “life didn’t give me a manual when it gave my Mom MS.”  I would find resources for people with MS, people who had spouses with MS but nothing from children whose parents had MS. I was frustrated. If I did find something it was an angry message board post about how much they hated this disease and the awful impact it had on their family. I could relate to those feelings but there was nothing else. No sign of hope. No message of here’s how my family is dealing with it. It made me feel even more alone than I already did.

I didn’t want to feel alone anymore. I thought surely there has to be other people out there like me. People who are close to their family and just want someone else who can relate to what they are going through. The challenges and the tough moments but without forgetting about the laughs and the fun moments. My hope when I started this blog was to find a way to positively express my feelings. To show the tough moments but to also show the fun moments. To talk about how I was feeling or how things were going honestly and openly. Deep down I thought that maybe along the way I would meet someone who could relate or understand. I hoped that my blog would find its way to other people who may feel like I do. I think it may be doing that. I am so thankful. I sit here today feeling less alone with a big heart and a big thank you.

Thank you for reading and for coming back here to read again. Thank you for believing in my words enough to read past a first paragraph. Most importantly thank you for helping me to know I am not alone. Sister K and I are not alone and there are lot of other people going through the same feelings and emotions. I wish there was a bigger word to use but there isn’t. So I’ll say it again today: Thank you.

Am I Coping or Ignoring?

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Have I started ignoring Mom’s MS when I am home? Is choosing to focus on other things the same as ignoring my feelings on the issue?

This thought has been on my mind since yesterday evening as Sister K and I drove back here together. We had a wonderful weekend at home celebrating Dad. It was simple but it was wonderful. Saturday we had a relaxing pool day in the backyard with oldies music and margaritas, Mom came out to sit in the shade for a little while, and we had a delicious dinner outside. The hysterical highlight: the moment Sister K and Dad decided to demonstrate that they can still do cannonballs (no one ended up in the hospital). I took pictures and hope to post those up a little later this week.

Sunday afternoon Sister K was working on grad school homework, Mom was resting and Dad was filling out some paperwork on the computer. I decided to try to make myself useful somehow. That is my new goal everyime I am home- to do something that would make Dad’s life easier during the week. I swept the house, I did the laundry, I did the dishes. In a sense I did chores. I felt good doing these things. I felt helpful.

But last night as we drove back, Sister K shared with me her concers about Mom. Her concerns about where her MS is heading. For instance Mom used to walk with her 4-wheeled pink walker “Pinky,” now she is walking with “Walkie:” a grey walker that only has 2 wheels in the front so she can have better control. Sister K said it best when she said I feel like just the mere fact that she is on a different walker is a big step in the wrong direction post-relapse. Sister K told me through her tears how she was fearful of the future with Mom and MS. Fearful of Mom changing. Fearful of Mom being here but being different. I could understand. I have felt all these same emotions before. But as I listened and we talked, I wasn’t feeling them in that moment. And I am not sure why. Have I finally in some way accepted what is going on? Is Sister K entering the beginning stages of this grieving process that I have felt like I have been in for quite some time? Or am I simply beginning to ignore the basics of Mom’s MS and choosing to focus elsewhere? Focus on something simple such as straightening the house, an area when I can actually see results?

I don’t know. I mean I have acknowledged that I have to keep living. I can’t focus on Mom’s MS 100% of the time. I am not pretending as if it doesn’t exist. But instead I am just shifting my focus when I am home to the things I know I can change. The ways I know I can help. Laundry, washing dishes, sweeping, straightening up. Chores that don’t carry the same negative connotation they did when I lived at home. Today I sit here thinking how good it feels to do chores at home. How uplifted I feel when I leave knowing I’ve made a difference. At the same time, I know Mom’s MS still exists. It is still there. There are still a number of feelings and emotions tied to it. So I continue to ask myself, are you ignoring the problem or are you just using these chores to help cope? I don’t know.

Do you have any certain things you use as coping mechanisms to deal with certain stresses? Do you ever ignore problems or pretend they don’t exist? How was your Father’s Day weekend? Anyone else out there still doing cannonballs? I, for one, am not.

A Simple Celebration

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Father’s Day is Sunday. Sister K and I are heading home this weekend to celebrate Dad. And celebrate Dad we will. We think he deserves an extra special celebration this year and Sister K and I want to make sure it is just that. He selected the menu- tomorrow we will swim in the pool, Papa will grill steaks and we will have corn, cole slaw and potato salad. Will these dishes be homemade? Ha. Nope. We are not exactly big chefs in my family. We will then eat an ice cream cake from Baskin Robbins. Pralines ‘n Creme, vanilla cake and Happy Father’s Day on top. Sunday we’re going to take him out to breakfast. That’s the plan. It’s a simple plan. But given the state of our “un-simple” life, it is a much welcome simple plan.

I was thinking about it and realized this is the first time we will all be together at home since Mom’s relapse issues began. Sure we have all been home but Mom was sick, or in the hospital or rehab and we were staying with her. It marks a big moment for us. A moment of moving forward. A moment of accepting the changes, adjusting to them and moving forward. Dad referred to this stage the other day as “posititvely moving uphill.”

I credit Dad with the positive element of this. He has held us together through all of this. He kept us moving. He was Mom’s advocate. He has been in two places at once. He has worn the many hats of husband, father, caregiver and then boss for his job. He never faltered. He never seemed shaken. And that was a comfort. We instinctively know when things are a big deal by Dad’s reaction. We look to him to gauge the severity of the situation. He continues to be the rock for Sister K and me. We continue positively moving forward because we see Dad positively moving forward. Dad has always been the greatest father in every sense of the word but over the past few months, especially the past few weeks he held us up. I admire him for his strength and faith. And I want to thank him for it. Hoping this Father’s Day brings a day of celebrating him as a father the way he deserves for everything he has done for us.

Hoping your family has a wonderful Father’s Day. What are your plans this weekend? Do you think sometimes the simplest celebrations are often the most fun? Do you like ice cream cakes? Dad is obsessed. I prefer a cookie cake 🙂

Ob-la-di, Ob-la-da

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I like music but I don’t consider myself a connoisseur. In fact at many different parts of my life people have made fun of me for having the worst taste in music. It’s fine. I like my pop music, my oldies, my disco loving jams. I often think I should’ve been born in a different era.

Right now though I’ve been sitting here this afternoon with The Beatles in my head. Specifically the silly song Obladi Oblada because that is how I feel today. That is how I feel about life right now.

Ob-la-di, ob-la-da, life goes on, brah!
Lala how the life goes on
Ob-la-di, ob-la-da, life goes on, brah!
Lala how the life goes on.

It’s comforting and nonsensical. It’s uplifting and silly. Life is going to go on. No matter what happens, no matter what you go through, life is going to go on. I don’t know how it will work or what will happen but life will go on. So today in the background of my mind as I sit here wondering about life today I’ve got The Beatles in my head and a silly phrase ob-la-di, ob-la-da.

Do you ever get songs stuck in your head that might in some weird way relate to your life? Do you like this silly song? Did you see it performed at the Queen’s Jubilee Concert last week?

Keepin’ It Light and Fluffy

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I love The Office. Husband and I are about 2 seasons behind. Our Office viewing goes something like this: we buy a season, we hole ourselves up at home to watch it on the weekends becoming somewhat addicted, we proceed to talk about it regularly as if these characters are our friends during this period and then we finish the season depressed until a new one comes out on dvd. We never watch it live. We then give the seasons to Mom and Dad who then catch up as well.  We are actually more behind than we used to be due to the mere fact of life. I plan to work on catching everyone up. As if this is a major life impacting goal to add to my to do list:
Catch everyone up on The Office: Check.

But it does make me think of the importance of tv shows and movies in brightening up my life sometimes. It is fun to sit around and quote movies at dinner or scenes from television shows we all love. It is like a big inside family joke. It gets everyone laughing. Instantly everyone’s head is transported to another time. They are with that character in their environment. Their head is filled with laughter thinking of it. Thus my head is filled with laughter and before I know it I am smiling and happy. As if happiness pulled a sneak attack on me.

It’s important to keep things light and fluffly sometimes. Conversations full of more laughter than content. Full of more television character quotes than news related stories. You know the moments where there isn’t much to say. The moments where looming in the background are the big overarching issues you are tired of talking about. In our case it is Mom’s MS. In these moments I have literally felt the tension lifted by just quoting a line from Wedding Crashers or a silly saying from Parent Trap. Stupid quotes are the bread and butter of my family. They bring the laughter which brings the smiles which brings the happiness. As insane as it may sound, these moments keep us sane.

Do you believe in fluffy conversation? Does your family enjoy quoting any particular tv shows or movies?  Does anyone love The Office dundies episodes as much as I do?        

Guilty.

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I feel a lot of guilt right now living out my day to day activities. Almost like my mind needs to be focused on Mom 24/7 or I am being a bad daughter. No it’s not a normal thought. No one has ever implied this needs to be the case. This is self imposed. But since I can’t physically be at home part of me feels like I need to mentally be focused on Mom. What specifically do I feel guilty about. The list is strange. The list may not make much sense to others. But here it is, my secret guilt list..

I feel guilty that I sit at home at night laying on the couch in my apartment watching The Bachelorette while Dad is the only one at home in the evenings helping Mom. Doing minor chores, small tasks, getting things for Mom, etc.

I feel guilty that I get to sleep through the night knowing Dad gets woken up by Mom to help her readjust or get out and back into bed.

I feel guilty that Dad sometimes has to grocery shop at 10pm at night becuase he has been so busy running a million different directions, many of which involve Mom. I feel guilty because I complain if I have to run any errands in the evening after work and Dad does nothing but run errands some nights after a long day of work.

I feel guilty I have time to read books when so often I hear Dad say how much he wishes he had free time to read a book. I feel guilty when I go to the gym. I feel guilty enjoying tiny privileges like these in my life.

I feel guilty I don’t live in the same city as my parents. I feel guilty because I could be so much help if I did. I feel guilty because I don’t think it will ever happen.

I feel guilty when I don’t tell the truth. When people ask how Mom is and I paint a prettier picture than reality.

I feel guilty. For these things and many more. Some like the above I am aware of. Some I think I am not so aware of. But I feel it. I feel the guilt. The fact that it is guilt I can’t do anything about is making me feel anxious. I think it may be the reason I have been having trouble falling asleep. Because at night, when the activities of the day have gone and I am laying in bed it’s just my thoughts and me. And these thoughts. This is where they go.

Do you ever feel guilty for things you obviously have no control over? Do you have a secret guilt list? On a lighter note, any fellow Bachelorette fans out there?

A New Normal

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Mom is home. Saturday Dad and I packed up Mom’s stuff from the rehab center and brought her home. This is good. I am not saying it isn’t. But it was also strange for me. Strange because of expectations I placed upon this event. The act of going home. All day Saturday I was having trouble shaking the feeling that I secretly wanted everything to immediately return to normal when we pulled into the garage. We’d all hop out of the car, walk in the house and things would return to normal.

Normal though is a funny word. I started thinking, what is my normal now? The old normal that I know is never returning. It is the one before Mom had MS. That is a normal I have grieved for and have accepted in a small way. I feel I accept it more and more every year. That normal is not coming back.

But the normal I am referring to now, I can’t help asking myself what is it?  The only answer I can come up with is before the relapse, but things weren’t perfect then either. Mom seemed to be declining in her abilities and struggling more over the past few months. So, what is the last date I can envision this normal I keep referring to? I don’t know. So then I struggle with that. Then I begin to feel sad. Then I begin to feel overwhelmed by my thoughts. Then I wish things would return to normal. Then the cycle continues.

I know the word “normal” is very loaded. Everyone has their own vision of normal. But right now I can’t even come up with the normal I am grieving or the normal that exists. Is that bad? Or is that part of living day to day? Reminding yourself there is no normal. Training my mind that each day is a new normal. The thought of that is kind of exhausting to me. But I guess that is part of living in the moment. Taking life one day at a time. You don’t look forward to a future normal. You don’t look back to your old normal. You live in today’s normal. Holding on to the good moments. Letting go of the bad moments. Trying to find a new normal.

Do you have trouble defining your normal? Do you believe each day may present it’s own new normal? Do you ever grieve for a past that is no more?

Finding My Armor

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A watermelon jolly rancher. This morning I was wandering around and stopped by the candy jar on someone’s desk and grabbed one. As I sat and enjoyed my jolly rancher I felt like I was transported back to childhood. To a simpler time. A time when jolly ranchers were life. Fighting with Sister K for all the red ones- cherry, watermelon, strawberry. Sometimes I enjoyed green apple. Always left the lemon or grape behind. Life was simple. The greatest worry I had when I held a bag of jolly ranchers was trying to get my favorite flavor out before Sister K took it.

This may seem like a silly post. It is. But I think it has a lesson to be learned. This morning I felt a wave of nostalgia. It struck me as interesting that a simple watermelon jolly rancher could conjure up so many memories. So many happy feelings. Bliss.

I am embarking on a journey to figure out how to take life one day at a time. This isn’t going to be easy. I already know it. I also already know I will fail. I will probably fail at in some way everyday. But today I feel a little successful. I am focused on the here and now. I am focused on my watermelon jolly rancher from this morning and with that comes a surge of happiness. A surge of happy feelings that I need to keep at the front of my mind. I need to use those as my armor to ward off the negative thoughts. Today jolly ranchers are my armor. Who knows what it may be tomorrow. Hopefully by striving to find something each day I can create my own suit of armor internally. A suit of armor filled with simple but strong thoughts.

What is your armor to help you ward off negative thoughts or worries? Do you have a piece of candy from your childhood that brings back a wave of nostalgia and good feelings? Does anyone else dislike lemon and grape flavored jolly ranchers?

Can You Keep A Secret?

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Mom is coming home. Saturday to be exact. This is good. I am telling myself this is good. But it’s not without some worry. She is moving around but still having challenges getting in and out of bed. She isn’t moving around perfectly but better than she was. The doctors are hopeful if she continues on her phsyical therapy her walking will continue to improve. I listen to Dad say these things. I sound enthusiastic and optimistic. But secretly, I am nervous.

Dad was beginning to have issues taking care of Mom by himself at home before her relapse occurred. I guess I am worried she will return home and all the same problems will exist. My family will have just been put through the ringer for the past month yet will not see any major improvements. It will have been as if we went through all of this for nothing. These are my secret fears.

Dad, Sister K and I are already talking quietly about back up plans. For what we will do if the next week or two are a struggle. If Mom is not as self sufficient as she needs to be. If Dad can’t handle it all again. We may need to bring someone into our house to help. I know that is a reality but it is a tough one. It is also one that won’t happen overnight. It also isn’t something happening tomorrow. But it is sitting there, secretly in the back of my mind.

I feel like I am on a hamster wheel. A giant circle. I go round and round and everything goes back to the same thing. Take life one day at a time. A good friend of mine whose Mom passed away from ALS texted me yesterday and said “Day by day is the only way to do it.” I know deep down she is right.

But I struggle. How do I do it? Do I trick my mind? Shut off thoughts about the future. Shut off my plans. Live today and today only. It is tough. Really tough. I struggle with this everyday. I struggle because of another secret- I don’t really know how to live day by day.  

Have you heard of the expression taking life one day at a time? Do you put up a brave front but keep a list of secret worries? Is it just me or does anyone else not know how to take life one day at a time?