Hello, This is My Life.

Sister K is between finishing grad school and starting her new job in October, so she is home this week. Dad had to go out of town on business and asked her to come in to help Mom out. This means I am spending the week left out of our mother/daughter trio and feeling jealous..bitter..and jealous.

But to make up for it Sister K has been snapping random iPhone pictures of Mom, updates on what they are doing, and funny comments that only she and I would understand. Sister K has a unique ability to roll with the punches in all of this. I think she does it better than me at times. Like today when Mom had finally gotten ready to go and had lunch, she then decided she needed to go lay down to rest…when Sister K texted me this I was thinking what??? Sister K just decided fine, I am going to set up my new iPad. But that’s what being part of a family with MS is in a way. It is rolling with the punches. We can have a perfectly scheduled day, but it hardly ever works out the way we have it planned. We never leave when we think we are going to, it takes us forever to get out the door, by the time we get somewhere we are usually cutting our plans in half because we have run out of time, and we have to find ways to combine all of these events into a one stop to minimize the number of times in and out of the car.

All of this is something that takes a lot of getting used to. It takes the ability to disown your plans and just own how off track your day is going to turn out. For someone who loves plans like me, this is not easy at all. Lately though when things start to go off course or off schedule I am learning to just stop and think: “Hello, this is my life.” And try to laugh.

Do you like making plans or are you more go with the flow? Do you think you can train yourself to be better at one or the other? Do you ever have moments of taking a step back and laughing thinking “Hello, this is my life”? Did you watch Dancing With The Stars last night? Expect me to be talking about it all season. I am apologizing in advance to my readers.

Monday Night Escape

I love this week every Fall. It is season premiere week and for someone like me who has several favorite tv shows and characters I have missed all summer, it is a big deal.

This time around though, Mom, Sister K and I have been emailing to pick a show to watch together. A show we could chat about and bond over as the tv season unfolds. We have selected Dancing With The Stars: All Stars which premieres tonight. I used to be a loyal viewer of the show, then stopped watching for awhile but this season some of my favorite dancers are back, so I will be too.

This may seem kind of silly or dumb. But I actually think it’s very important. With Mom’s MS and the restraints it has placed on her daily life, sometimes it is hard to find things to just escape and talk about; things that are not important at all but we can pretend are incredibly important; topics to bond over; new people to discuss. That’s the escape Dancing With The Stars provides us. It is similar to the escape the Bachelor/Bachelorette also provides.

The escape is important. The change in conversation is important. I believe it helps our relationship and provides us with good memories. It’s that relationship and the little inside jokes and comments we remember from these experiences that help us in the tough moments.

Does your family every bond over tv shows? Do you think it’s important to have a little escape into whatever show you may like such as the world of competitive celebrity ballroom dancing? Will you be watching Dancing With The Stars tonight?

Changing of Seasons

Saturday marks the beginning of fall. To me fall is a magical time because there is so much anticipation in the air. There are lots of holidays to look forward to- Halloween, Thanksgiving, Christmas and New Year’s. There are days off from work, parties to attend, presents to buy, and visits with people you haven’t seen in awhile.

With each holiday season though there are new challenges for us as a family and so far no two years have been alike. Halloween specifically has undergone its own transformation over the past couple of years. The candy distribution has seen a complete overhaul in many ways. Mom and Dad have gone from sitting on the porch together passing out candy all evening to Mom passing it out as the doorbell rings, to Mom leaving candy on the door step because it is too difficult to get up and down. This is sad because while to some that may seem like a hassle it is something Mom loved to do. Seeing the kids, their costumes and the interaction.

In addition to the anticipation and excitement the fall season also brings with it a touch of nostalgia and sadness for me as I think about year’s past. Think about how one compares to the next. I think this is also just the nature of life- MS or no MS. No two years are the same and no two years will bring with them the same dynamics. It’s important to remember that for once this is not something unique to Mom’s MS. Life changes for everyone year to year.

Do you ever feel nostalgia comparing holiday experiences from the past to the present? Do you enjoy the fall season? What is your favorite holiday? Do you dress up for Halloween?

Two Years Ago

Today is our day. Husband and mine. It is our 2 year wedding anniversary. I am actually amazed at everything we have gone through together in the past 2 years. We are fondly telling everyone we survived the “terrible twos.” The past year has been a crazy year for us.

But with any wedding anniversary comes thoughts of the wedding day. One theme I am filled with everytime I think about it, look at pictures or watch our wedding video is love. The love of my husband, the love of my family, the love of our friends- it is a big day filled with love.

It also makes me think about the many layers to my family that day. We were still dealing with Mom’s diagnosis and managing the changes that went along with it. The wedding weekend festivities were a lot for Mom. They borderline wore her out by Sunday between the anticipation, nonstop activitiy- bridesmaid luncheon, rehearsal dinner and wedding day.  None of us really knew what to expect going into it. At the same time though as the bride you are busy with a lot of other things both physically, mentally and emotionally. It wasn’t really the circumstances I ever expected to exist at my wedding but at the same time the tight family unit that we are got us through them as seamless as possible. We all spent the day stepping in and out to assist Mom, to assist Me, to assist each other when necessary. Sister K especially, she had a hand in everything that day. Few people knew the true puzzle and many moving parts of this wonderful day.

We put on a smile and we put on a show. We put on a great wedding. We laughed, we acted silly, we cried, we danced- in a way we took off the mask that had been hiding Mom’s MS and we just said this is us. Life isn’t perfect but our life is full of love. Reflecting on that day reminds me that everyday is another version of this when we are with Mom. Showing the world who we are with Mom’s MS and relying on the love we have for each other to get us through these big moments.

Did anything unexpected happen on your wedding day? What is your favorite part of a wedding? How would you handle something like MS when there is a lot of focus on your family at a big event?

Recharging My Batteries

Yesterday I was sitting at the gate waiting to board my plane to head back from a weekend spent visiting my college roommate. Sister K called because she was driving back from a wedding she attended this weekend. We were on the phone and she wanted to three-way call Mom. I knew if this was happening the conversation was about to become very ridiculous very fast, so I left my seat to avoid people overhearing/staring strangely at me.

Mom got on the phone and we were all so excited we just started talking over each other. I don’t know why. It’s not like we never talk to each other and this is some rare occurrence. But the fact that all of us are on the phone at the same time is somehow an adrenaline rush of excitement and happiness. We talked about the weekend. Sister K and I competed for Mom’s attention. Mom was laughing at our stories and trying to get us to calm down so she could hear them. It felt like a different variation of my childhood.

It was also like taking a major shot of happiness. After I got off the phone I thought how fortunate I am to have these two women in my life. Our moments aren’t perfect. Mom’s health isn’t perfect. Our life is far from perfect. Even this chaotic phone conversation wasn’t perfect. I don’t think we really got anything of substance accomplished and halfway through Mom and I had to listen to Sister K complete her drive through order.

But in a sense I was living in the moment. Something I am working hard to do. I wasn’t concerned with Mom’s health, I didn’t ask her any questions about how she was feeling, I just laughed and talked. We all laughed and talked. Created another funny memory. It’s all these funny memories and moments that gets Sister K and I through the tough ones. I consider it our battery recharge and even though it may seem dumb, the sillier the moment the more important it is to charging us up.

Do you believe you need some sort of fuel to get you through tough times? How do you strengthen yourself to prepare as much as you can for a future you can’t predict? Ever had a funny airport conversation and been stared at by other passengers?

“In sickness & In health”

September 13, 1980. I wasn’t born yet. I wasn’t even a flick on their radar. I imagine they stood there though. Mom and Dad. Not yet a Mom and Dad, just a man and woman in love. Saying their vows. Living in the moment as a bride and groom. Relishing in the excitement of getting married.

On that day they also said some vows to each other.

“I ___ take you ____ to be my lawful husband/wife, to have and to hold from this day forward, for better, for worse, for richer, for poorer, in sickness and health, until death do us part.”

Simple words. Powerful words. I have thought a lot about these vows for the past 3 years as I have watched Mom and Dad deal with Mom’s MS. Dealing with an illness that has brought circumstances they never could have imagined standing there together 32 years ago. Circumstances no bride and groom could probably imagine as they stand together saying their vows on their wedding day.

I have watched my parents wrestle with Mom’s MS for the past 3 years since her diagnosis. I have watched the love and support. I have watched Dad deal with so much. I have watched Mom deal with so much. Their life is very present in those marriage vows. “…in sickness and health..” They live their marraige vows everyday.

Today as my parents celebrate their anniversary I can’t help but thank them for providing the ultimate example of love and committment to me. They show me everyday the true meaning of wedding vows. The circumstances may have changed a bit in the past 32 years, but the love that was there as they said those vows remains the same. It’s love that allows them to hold on to those vows. Never wavering or faltering. It’s from them I have learned the power of love.

Happy 32nd Anniversary Mom & Dad!

A Family of Tortoises

We move slow. Like really really slow. If you compared us to The Tortoise and The Hare, we are a family of tortoises. This requires patience. It requires me to shut my mind down and not be in a hurry. It requires some practice too because slowing down doesn’t just come naturally.

Saturday after our football game, Sister K and Husband headed back immediately. Husband had to study and Sister K had evening plans. I stayed behind with Mom, Dad and Grandpa because I didn’t have anything going on that evening. There are two ways for Mom and Dad to get home and one of them would pass through our city so they could drop me off en route home. This way I could drive the majority of the way back and give Dad a break.

As the four of us walked into a restaurant to meet up with my Godfather and his wife after the game, I noticed how slow we were moving. As I helped Mom to the restroom and back to our table, we moved slow. Then en route on the way back we made a restroom stop at McDonalds and this ended up being about a 30 minute break for us.

I did a good job of not getting frustrated. I think I mentally was just thinking, this is what it is. This is what it is. Getting frustrated is not going to make Mom move faster. Mom is moving as fast as she can. She was worn out by the time she had walked inside McDonald’s with her walker and back out to the car. I saw it in her face how much effort was involved for something that many people take for granted. But even though she is moving slow, in the world of MS the important piece is she is moving. And for that I am thankful.

But it’s still hard. It’s hard because you have to desensitize yourself to your surroundings. Stop watching the people who are able to get in and out of McDonald’s in 5 minutes. Stop thinking of the clock ticking by into the late night while you are tired and patiently walking slow with Mom. Making sure your face stays pleasant during all of this patient waiting. Continuing to small talk with Mom so she doesn’t feel awkward as she moves so slow. It is effort for everyone. For Mom and for all of us. In a way. it is more effort to move slow than to move fast.

But, no matter how slow we are moving, we are moving. Sometimes it allows you to really pause and absorb the moment. Sometimes you are fighting everything within you not to just throw your hands up in frustration. You have to control your mind and mentally let the thoughts that come along with regular day to day life disappear. The impulses you have to hurry up and move fast, you have to let them go. And I was proud of myself because Saturday evening I was able to let my inner controller/planner go and just exist. Knowing eventually we would leave McDonald’s. No matter how long it took eventually we’d be outside. But most importantly was that Mom was doing this on her own.

Do you consider yourself a tortoise or a hare? Do you struggle with moving slower when you are used to moving faster? Do you ever allow your mind to mentally zone out of a situation to better deal it?

Football and Accountability

College football season has begun. I am not a huge football fan, even in college the games were more of a social event than an intense sports experience for me. I went to the same college my Grandpa went to. He and my Grandma had season tickets to the games all their lives and this became very special when I started there as well. The funny thing is I had never intended to go to this university- Mom and Dad didn’t go there and I was considering other schools. I had applied, was accepted and just decided in March of my senior year I would go. I based this on deciding one college I was considering was too close because it was in the same city as my parents and the other was in another state and too far away. This one seemed like the perfect compromise.

That decision began a series of memories I could not imagine my life without. When I started college I would visit with my Grandparents before the games. When Sister K decided she also wanted to go there Mom and Dad also bought season tickets. They would come up with my grandparents and visit with us before the games. I only experienced that for one year because Sister K and I only overlapped in college for one year- I was a senior and she was a freshman.

Two years ago my Grandmother passed away from Alzheimer’s and around that time Mom’s MS symptoms were making it more difficult to attend the games. So Sister K, Husband and I started going with my Grandfather. He would ride up on a bus chartered by the school or we would go home for the weekends and drive him up and back.

Last football season Mom and Dad didn’t go to any games. It became too much with all of the walking and our student center was being renovated so there wasn’t a place for her to sit and watch indoors with Dad. But now our student center is finished and tomorrow we are all going to the game. Mom, Dad, Grandpa, Husband, Sister K and Me. Mom and Dad won’t go to the game but will sit inside the student center to watch. We’ll wheel Mom around in her wheelchair and she will love being back in the middle of the game day atmosphere. More than anything we will be creating new memories.

The day will probably bring some challenges for us. I am sure there will be new things to learn as we navigate Mom around our college campus, figure out the best place to eat for everyone to feel most comfortable and get Mom and Dad a nice spot to sit and watch the game at…I have given it just a “little” thought. But at the same time I am excited to share this with everyone again. I am hoping I remain patient and am able to roll with any bumps in the road that may occur along the way. I am writing it here as a way to remind myself to be patient and avoid feeling overwhelmed and frustrated- to hold myself accountable.

What are you plans for the weekend? Do you like college football or ever go to any football games of any kind? How do you hold yourself accountable when trying to change?

Let’s All Go To The Movies

Do you enjoy movies? I do. I like going to the movies, renting movies, basically movies of any sort. They are a nice break, they can provide a fun activity and they can provide a cheap date night for Husband and me especially when we rent a RedBox for $1 and watch at home.

My family has always enjoyed movies. Being from a house full of girls, Dad typically got stuck at lots of chickflicks and not too many action packed adventures. We do love comedies though. Nothing is funnier than a chaotic family comedy scene in a movie full of one liners that we know we will be reciting again and again.

Today I was online and saw the Top 40 movies coming out this fall and it looks like there are some good ones. One in particular made me think of my mother- Parental Guidance. It is starring Billy Crystal and Bette Midler as grandparents watching their grandchildren for the week. Not only do my parents love both of these actors, I can already hear my parents laughing, especially Dad. As I read through the preview, I was thinking I can’t wait to take them to see this.

The other nice thing is knowing that seeing a movie isn’t going to be a big stress on Mom. She knows the theater, knows the set-up and they even have handicap accessible seating. Buy some popcorn, plop down and enjoy a mindless break for an hour or so. Or we rent the movie, all sit around in the living room and enjoy an evening of laughter together. That’s the great thing about movies. We have so many alternatives to how we can experience them but regardless of which way we choose I know it will be a fun escape.

Does your family enjoy movies? Have you found movies to be an stress free or stressful activity? Do you all agree on movies? Anyone out there looking forward to “Parental Guidance?”

The Magic of the Beach

A recharge weekend. A brief but important escape. A sunburn souvenir. These are all the perfect ways to describe this past weekend. Husband and I headed to the beach for a quick mini-vacation before he begins the 2nd year of his MBA program tomorrow. I didn’t realize how much we needed the mini-vacation until yesterday as we were heading back.

This summer has been one focused on Mom. Husband was also out of town for an internship for most of it too. I know it may sound bad to say but this helped me to balance being a daughter during that tough time with being a wife. But, as Husband and I near our 2 year anniversary in a few weeks I don’t feel any more knowledgeable on that subject than I did when we first got married. That balance is something I am still trying to figure out. Even under completely uneventful circumstances I don’t believe it is something that would happen magically overnight. 

Mom’s MS brings a level of stress to my own life. Husband’s rigorous MBA program has also done the same. Both are out of my control but directly impact my life. Just as I felt Mom’s MS may be settling down, Husband’s job interviews are creeping up indicating a stressful time for us. It’s kind of like a seesaw and I just go back and forth between the two for the time being. It is also difficult balancing that because my roles in both situations are different. On the one hand I am a daughter and on the other hand I am a wife. They are roles I am still figuring out how to shift between on a daily basis as each one can require more of my attention at certain times.

This weekend at the beach helped tie all of this together for me.  I have memories at the beach with Mom and our family when I was younger. I have memories of vacations spent at certain hotels, playing in the ocean with Sister K and eating at our favorite restaurants. It was unique to share that with Husband but also create our own new memories. It was a way to bridge my childhood as a daughter to my adulthood as a wife. It was also a way for me to enjoy both roles without the stress that can come with them. Being at the beach took me back to the basics of life. Whether you are looking out at the ocean or playing in the waves it can be a big cure for a lot of different stresses. No matter what phase of life you are at, the beach is the one place you are never too old to enjoy.

Do you have multiple roles in your family you have learned to balance/shift between? Do you have any special places you went as a child and visited as an adult with different family members? What is your idea of a recharge weekend? Anyone have any remedies for sunburns? I am hurting today and imagine I will be all week. I put on sunscren in the morning but learned the hard way you have to always reapply…