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. 
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?
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.
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.
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 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 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.
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!
“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.
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.
MS recess 