Ob-la-di, Ob-la-da

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

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.

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

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

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?

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?

A Simple Break


Meet Sister K.

Today Sister K and I met up for “lunch.” I say “lunch” because this consisted of meeting for TCBY yogurt and then walking down the street for a McDonalds iced tea. But regardless it lifted my spirits. It perked me up. It always does. I was making fun of her in her backpack with umbrella and water bottle. So I snapped a picture, using Sister K’s iPhone. My poor blackberry photo quality is limited.

A simple lunch break. A simple pleasure. Right now life is a little upside down. But we can meet for a moment and do something simple. Simple and cheap. Sitting on a bench. She asked if I’d talked to Dad. I asked if she’d talked to Mom. We compared notes. We seem to do a lot of this lately. We talk to each of our parents separately. Then we compare notes. We give each other updates. Did Mom sound happy? Did Dad sound overwhelmed? How did Mom say the doctor went? How did Dad say the doctor went?

I told her I called Dad this morning. I told her I had started calling him in the mornings to check on him on my way to work. Not really sure why, but I am wondering if it will become a habit. Sister K told me I am turning into our “family manager.” In some ways I feel like I am. I feel like all of our roles are changing a bit. I have noticed changes in Sister K, noticed changes in Dad, even noticed changes in Mom. There is a subtle and quiet evolution going on within the walls of our family. Each of us picking up new responsibilities, settling into shifted roles, figuring out how we can help, etc.

One new thing I started doing this week is trying to help Dad from far away. I know I can’t be there physically to help him with everything but it occurred to me I could make phone calls and help with little administrative tasks. I made a phone call about getting Mom’s doctor to request her medical records, I followed up on some airline flights, I got a question answered from our house title company, I even helped Sister K fill out her W-2 form for her new job so Dad didn’t have to worry about it. I think people may look at me like I am crazy or think my family is helpless. This is not the case at all. These things make me feel useful. They make me feel like I am doing something. Like I am helping in some way. If I can’t be there physically at least I can help take some things off Dad’s plate right now so he has less to worry about besides Mom. The moments I feel the most crazy in my mind are the moments when I feel absolutely helpless. I am learning the best way for me to deal with this is to feel useful- no matter how large or small the task may seem.

Do you struggle when you feel like there is nothing you can do to help in a situation? Do you ever assist your family in administrative tasks that may seem odd to others? Do you enjoy frozen yogurt as much as Sister K and me?

Did I Ask For Your Advice?

Have you ever noticed that everyone has an opinion? They really do. Positive. Negative. Everyone has one. Some people keep them to themselves. But a lot of people do not. That’s fine, I tell myself. I understand. They are only worried. They are concerned. 

But then I stopped to think about it. Really stopped to think about it and it’s not fine. I don’t understand. I never just offer my opinions about how people are running their lives the way people do to my family. And I don’t understand. Do we have a sign that says we don’t have control of the situation? The situation being Mom’s MS. 

Well, you are right. We don’t have control. We get close to having control. Then we have a million curve balls thrown at us at once. We are currently trying desperately to regain control. Dad, Sister K, Mom and I. Each in our own way but as a family. We are doing the best we can with what we have been given. The tough part is that I don’t think people realize this nor care. They just want to issue judgment. Tell us what we should be doing. What we should be making Mom do. How Mom should think. This has gone on long before the past few weeks. This has gone on since Mom was diagnosed with MS.

Your Mom should walk with a cane.” “Your Mom needs to work out more.” “Your Mom needs to lose weight.” “Your Mom is running your Dad down.” “Your Mom isn’t telling you everything going on.” “Your Mom is depressed.” And it goes on, and on, and on…

And all of a sudden it has occurred to me…This is just rude.   

Aside from your care and concern, I would never and I mean never make comments to your children about you like this. Dad would never make comments to other men about their wives like this. But people do it to us all the time. Constantly. We have started dreading get togethers. We cannot escape it. I can’t even come up with an appropriate response it’s so ridiculous. Do I say thank you and chime in with my thoughts as I have been doing? {I think that may be wrong} Do I say something like we are doing the best we can? {That may be better} Do I say what I really want to and reply could you please keep your opinions to yourself because they are rude?

I was brought up with good manners. Sometimes I feel like it is one of my downfalls. Sister K and I say what we are supposed to say, we do what we are supposed to do, even when others don’t return the courtesy. But Mom’s MS is conflicting with these good manners. I am sure people mean well, they don’t know what else to say, they are only trying to be there for us. But I am tired. Exhausted by the comments. I am 28. Sister K is 25. You are much older than us. Maybe that is why you feel you have a license to comment. Maybe you secretly enjoy watching my family deal with a hurdle. Maybe you just want the juicy gossip. Maybe you legitimately care. I do not know but I also no longer care. If you really had any clue how hard this is on us you would put yourself in my shoes for a minute before speaking. How does it feel to be watching your Mom’s ability to walk deteriorate while your other friends are at the mall with their Moms? How does it feel to have your entire family’s world turned upside down? How does it feel to have no control over your Mom’s health, no straight path to getting better, nothing except trial and error- but don’t trial and error too long or you lose your window to improve? Do you think your comments help my stress about this? Do you think you make me feel any better with your comments? Oh yes, you dealt with something similar with your Mom when she was in her 80s. My mom is 59. Yet again, not the same.

Please stop giving Dad, Sister K and I advice. Let us deal with this ourselves. You have no idea how hard this is on us. You don’t understand. We didn’t ask for your advice so please don’t give it.

Do you ever have issues with the way people try to offer advice? Why do people feel entitled to offer advice when it wasn’t asked for? Am I being too hard on the world? Any advice on how you would respond to these comments?

We’re Gonna Dance

This past Saturday provided a small but much needed “life break.” We had a wedding to attend for D, the daughter of one of Mom’s college friends. Mom’s college friends are her best friends and these get togethers are always ridiculous and full of laughter. They all have kids around the same age so needless to say there have been a lot of weddings the past few years between everyone’s kids. They are always fun and we always look forward to these occasions.

But this wedding weekend felt a bit different because of everything that had gone on the past 2 weeks. My family was tired. We were nervous. A Saturday day trip brought a lot of unknowns. I wasn’t sure how everything would work with Mom. Sister K kept telling me I shouldn’t worry about it, I just needed to let it come. She said if I worried I would work myself up before anything even happens. In hindsight she was right. I shouldn’t have been so worried about it, but I still was. 

With the rules of Mom’s rehab facility she can leave during the day after PT/OTbut has to be back by midnight. D’s wedding was taking place here, where Sister K and I live. What was going to be a fun weekend trip became a day trip. The original plan changed. With Sister K’s help, Mom planned a big lunch for everyone at a restaurant in the afternoon so we could all spend time together before the wedding. Mom is the planner of her group. That is where I get it from.

Mom and Dad arrived in town, we met everone for lunch, Mom went and rested, then we met back up with everyone at the church for the wedding and reception that evening. As usual we were late for lunch, barely on time for the wedding. I now say that with a smile on my face. A smile because we are doing the best we can and I am learning to roll with that. If we are only 30 minutes late then we have succeeded. We may be late but we do make it and that is all that matters. Mom used her wheelchair Saturday and we took turns pushing her around. Her friends were so excited to see her and you could feel the energy change when she showed up. They all took turns sitting next to her at the reception, sharing stories, gossiping and laughing. Dad loved that they kept sitting in his seat to talk to her. This night was important for Mom in more ways than we know. It revitalized her. She got dressed up. She did her hair and put on make up. She had on her nice jewelry. She looked very pretty. I was so proud. I knew she felt good. Look good, feel good. Our whole family needed it. 

There was a moment during the reception though when Maroon 5 Moves Like Jagger came on. Sister K and I were already on the dance floor. Sister K knows how much everyone in our small family loves this song (even though she does not) and proclaimed, “We gotta go get Dad!” So we ran over to the table, interrupted Dad’s conversation and made him come out on the dance floor with us. Sidenote regarding my family: This isn’t exactly an odd thing to happen. We are a dancing family. Dad and I danced to Abba’s Dancing Queen at my wedding as our Father/Daughter dance. We love to dance. In fact Sister K and I had already decided ahead of time the best way to avoid having to talk to other people about Mom was to never leave the dance floor. We had decided “We’re going to avoid everything and we’re just going to dance.”

But this moment of dancing and smiling felt different. I had an overwhelming feeling of admiration for my family.  Here were three people who have had their lives turned upside down in the past 2 weeks. And it’s not over. Things will still continue to be a rollercoaster. But in that moment we were full of smiles. Holding hands with Dad on the dance floor. Acting goofy. Full of life.  

This weekend was not without its stressful moments. We haven’t been given a magic wand to make life stress free just yet. There was the trickiness of moving Mom around in her wheelchair, getting her in and out of the car, trying to appear that everything was seamless to others, making sure Mom was feeling comfortable, etc. But even with the tiny moments of stress, the memory and the feelings associated with Dad out on the dance floor felt like a small reward for the tough moments of the past few weeks. It also reminded me that my family is tough. We are strong.

I believe only the strongest families can handle MS. I think everyone needs to remind themselves of that when things get tough. MS families each have their own qualities that bond them together. MS doesn’t break them but makes them stronger. Everyone pulls this strength from their own unique family personality. In their own ways everyday. For us, some days it is from laughter. Some days it is from random comments. But on Saturday night it was from dancing. I looked at Dad and Sister K and I said we are going to make it. We are going to get through this.

And we will.

How does your family cope with tough moments? Do you find strength in things as simple as laughter or dancing? Do you love a good wedding reception dance floor as much as I do? Have you ever caught a bouquet? Sister K actually tried instead of hiding in the back for the first time ever, and she failed miserably…  

Warning: I Am Angry

Since I returned Monday I have noticed something. I am a little more short fused. I am letting my negative thoughts consume my mind. My fights are escalating. I am losing my cool easier.

I am angry.

I am. I am admitting it right here for the first time to myself. It has occurred to me maybe I am going through the “Stages of Grief” again. As if I haven’t already gone through them or continue to go through them with Mom’s MS. That makes me angry too. The fact that I feel like just as I feel I have reached “Acceptance” I am back behind in one of the other stages again. I am angry.

Tuesday night Sister K and I got into a big fight. Sure we fight from time to time but typically they are silly and one of us can snap the other out of it pretty quickly. We are fighting experts. I have to say I have been fighting with her longer than anyone else in the world. That’s the beauty of having a sister who is also your best friend. We fight we make up. The cycle continues. But Tuesday night I felt differently. I felt full of a different kind of anger and it wasn’t even directed at Sister K. I was just mad. And she was mad too. 

Then come Wednesday night I got into a fight with Husband on the phone. We still haven’t received our tax return we filed in March which is becoming a source of stress in our lives. With him being in school and me supporting us this is probably the one time in our entire lives where we really need the money. After a frustrating morning on the phone with the IRS they said there had been an error processing it, it was corrected April 15 and now it was being processed. We should be receiving it in 4-6 weeks which would have been last week. Husband is really mad about this as he should be. I just figure we can’t do anything about it. Literally we can’t do anything. There is no one you complain to about the IRS and it is pointless anger. We are just going to have to live until we get it. But the point is, we got into a huge fight.

Then yesterday at work I received a note from someone asking about Mom that rubbed me the wrong way. Implying Mom wasn’t telling her the truth. I was so mad. Then I got mad about some of the people we have in our lives who are nowhere to be seen. Then last night I got mad at Husband again on the phone. He told me I can’t expect that much out of people when they probably aren’t even sure what they should do themselves. This made me mad. As you can see, I am angry. But I think I am misdirecting all of my anger. It’s all coming out at all the wrong people and issues. 

Why am I angry? Or who am I angry at? I don’t know. I am mad at MS. I am mad that Mom went into the hospital for a week, is in rehab now but I am not sure she is having any major improvements. I am mad because I am not sure whose fault that is- MS or Mom? I am mad that this is all consuming in our family. I am mad because other families don’t have these issues with their Mom. I am mad that Mom had to be the one to get this. I am mad because I don’t think Mom is strong enough mentally and enough of a fighter to handle this. I am mad because my family needs a break. I am mad because there is no cure. There is no end in sight to this. I am mad because I am trying to take things one day at a time and my mind won’t let me. I am mad that all of this is so hard on Dad. I am mad that Dad is having to go through all of this. I am mad at the unknown of all of this. I am mad that Mom really may not improve very much while she is at rehab. I am mad because I am trying so hard to be optimistic about Mom’s health and struggling badly right now. I am mad because the reality of home health care is a little scarier than just the idea of it. I am mad because I am scared Mom is changing. I am mad because I see my relationship with Mom changing. I am mad because I feel like MS is slowly taking away who she is, especially the part of her that makes her Mom. I am mad because I want it to all go away. 

I want it to all go away. And it won’t. It’s never going away. Things are never going back to the way they were. My acceptance of this will come. I know it will. But right now I am angry.

To put it bluntly, this sucks.