Monthly Archives: September 2012

Lunch Time is Our Time

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Sister K told me something today: “Mom gets so excited when you call her on your lunch break. When I was home at 12:00 and the phone rang she would exclaim oh it’s time for “lunchtime chat!”

I think I mentioned before “lunchtime chats” are something Mom and I started calling my lunch break a few years ago when I started my first job. I was bored and lonely so I would call her on my lunch hour and keep her on the phone while we ran errands together, walked around or sometimes literally ate my lunch.

But now it has kind of become our thing. It is our time. Sometimes the conversations are long and sometimes they are short. Sometimes they are deep and sometimes they are light. But pretty much everyday we talk around 12pm. It’s now a way for me to check in with Mom to see how things are going and see if she’s having a good day or bad day.

I think we all have things like this we do in our lives. Little things that seem little to us but are a big deal to someone else. To me these phone calls are just little things. They are something I started doing because I was bored at lunch and wanted someone to talk to, but they have become much more than that…they have become my time with Mom. They give her something to look forward to knowing everyday around lunchtime, the phone is going to ring and it’s going to be me. Sometimes we laugh, sometimes we argue, but regardless it’s time with Mom and it helps me to focus on her as Mom and not Mom with MS.

Is there anything small you started with others in your life that has become something much bigger? Do you like talking on the phone or prefer email/text communication? Hope you have a great weekend!

Mom’s Cheerleaders

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As I mentioned, Sister K has been home this week staying with Mom. Last night Mom’s physical therapist Coach C came over to work with her. Between the two of them they will use any excuse to turn something into a party; and, since Sister K was in town, she and Mom threw a mini one with the three of them. They made chi-chis, Mom’s favorite Hawaiian drink, and ordered Papa John’s pizza. Sister K texted me to ask: how do I get Mom to do her exercises even though we’re having party time. I said: well you’re just going to have to channel your inner “responsible big sister (me)” and do it. Coach C ended up taking the responsibility and got Mom on her bike even though she didn’t want to do it.

But I love this scene and the atmosphere because it is a way we are turning these seemingly tough moments and situations into fun. We are blending physical therapy with a party. We are blending MS and who we are as a family. It is another way we are creating our new normal.

We have also learned that the more we make these things uplifting and fun as opposed to depressing and focused on MS, the more positive Mom’s feelings on the situation are. We are in many ways her cheerleaders and have realized the responsibility that has been placed on us to help Mom…Keep her spirits up when we can, keep things positive, and keep things fun. I am not saying we are perfect- I know Sister K and I have snapped more times than we’d like, but last night I’d say she got it right.

How do you adapt to tough changes and keep things positive at the same time? Do you ever feel like you are the cheerleader for someone during tough times or have someone in your life who is your cheerleader? Have you ever tried a chi-chi?

Man’s Best Friend

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When I was little we had a cat. It was a stray cat who we found in our backyard living under our deck and ended up adopting. Katie Cat was my best friend in the world and she was with us from when I was about 6 years old to 20 years old.

During that time period though we also adopted a dachshund named Lucy. Sister K really wanted a dog and a family we knew wasn’t able to care for their dachshund anymore. Then the Spring after Katie Cat passed away, Sister K wanted to get her best friend a dog for her birthday. Mom had spoken with the parents, they said it was fine and she went to the shelter to adopt a puppy. They gave it to Sister K’s best friend and 2 days later the parents returned with the dog saying their daughter was allergic. We don’t totally believe that but at the same time we didn’t know what else to do, so Daisy became part of the family too. And we became the owners of two dogs. We had gone from a family with one cat to a family of dogs. I find this funny because most people are either always cat people or always dog people, but we experienced this strange evolution to where we are today.

At the time though, I didn’t realize the intricate ways these two dogs would become such an important part of our lives. Mom didn’t have MS yet and we had no idea the diagnosis would be coming many years later. But now she does. She has MS and we still have these two dogs. Daisy and Lucy have become her companions in a house that could be sad and depressing since she spends most days there. In a way they keep her active and accountable requiring her to get up and let them outside, feed them or play ball with them. They keep her spirits up, make her laugh and in many ways I believe they look after her too.

When Mom had her relapse in May and was sick at home prior to it, they laid on the bed with her and did not want to leave. I believe they sensed something was wrong. And on most days they stay with her, following her around the house wherever she goes. Especially our dachshund Lucy. She walks directly in front of Mom wherever she goes. She also pauses to wait for Mom to catch up with her walker before walking further. We fondly refer to this as “the parade” at our house and refer to Lucy as the Grand Marshal.

It’s amazing how these four legged animals came into our lives expected and unexpectedly, yet I could not imagine life without them. I know I can never thank them for the companionship and important role they provide in Mom’s life, but I hope somehow they know this. They are more than pets to us- they are members of the family.

Do you have pets? Have they developed personalities making them a member of the family too? Do you believe pets have a way of knowing when things are wrong with their owners? Are you a dog person, cat person or other kind of animal person?

Hello, This is My Life.

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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

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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?

Unexpected “Emotional Dump”

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Do you ever have moments where someone contacts you out of the blue- a text, an email a phone call…and before you know it you are thinking I didn’t know how badly I needed to talk to someone. You don’t realize how badly you are in need of an “emotional dump” and an encouraging word until after it’s over.

This happened yesterday to me. One of my best friends who was my roommate before Husband and I got married texted me out of the blue to say “Tomorrow is Friday!” It was a random text. And all of a sudden before I knew it words were pouring out of me over texts, I couldn’t keep up with my thoughts and I just let everything I was thinking out. Then I caught myself thinking I bet she thinks I am crazy or is wishing she had never texted me in the first place. But she responded and she kept responding. She was encouraging, she was saying all the right things, she was giving me a text message pep talk with exactly what I needed to hear at that moment. I later said it was so strange she just happened to message because I was en route to a happy hour and was in my post work exhausted state of mind…but the timing was perfect. She said, “I don’t know why I just felt like I needed to message you; I couldn’t think of anything to say so I just said something silly.”

I need to remember these moments. I think they happen to me more than I realize. They happen when I am worried about Mom, overwhelmed by life, stressed by my own life…they just happen. The thing is they don’t come in the form of a giant lightning bolt of wisdom, instead they come in very simple forms like a blog post comment or a silly text message from a friend. It’s a reminder of the power of friends. It’s also a reminder of the power of this blog. All of your comments and notes are not lost on me and I do believe each of you holds a purpose in my life bigger than you realize in why you come here and comment. I hope today I can be the cheerleader in a tough moment for you and all of my friends the way so many people are for me. Cheers to helping each other make it through the messy parts of life!

Have you ever had a moment where someone contacts you out of the blue but in hindsight you realize how much you needed to talk to someone? Do you like the phrase “emotional dump?” I just invented it yesterday. What are your plans for the weekend? Sister K and I are heading to another college football game tomorrow. Have a great weekend!

Changing of Seasons

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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?

Hang In There

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This is a blog about Mom and it’s also a blog about me. It’s about dealing with Mom’s MS but it’s about me dealing with Mom’s MS. Because of this you have to know a little about me. I have to share what’s going on in my life so you know where my head is at when things happen. Obviously when life is skipping by blissfully I am more equipped to handle Mom’s MS symptoms. When life is giving me nonstop lemons I have a shorter fuse for how I deal Mom’s MS.

Right now is tough because Husband is looking for jobs. He is a grad student getting his MBA and looking for jobs. It is competitive. He works so hard and it doesn’t seem to matter. It is just a tough job environment right now and he has been dealt a lot of rejections. The point though is I am down. It’s a lot to be dealing with for both of us. Yesterday was our 2 year anniversary and we had a wonderful dinner celebrating. Then I woke up this morning and felt like my 24 hour break from reality was over.

What’s interesting though is how much the importance of Mom’s MS has shifted in my mind as I deal with all of this. I call her, I tell her what’s going on and I don’t ask one thing about how she is feeling. But at the same time the MS is still very much there based on the comments she makes that are now very normal within conversation. Comments such as: “hold on a second, walking to the table and can’t walk and talk with the walker;” “trying to reach for an ingredient to make a brisket but Sister K rearranged everything in the pantry and now the items I need are high up and I can’t reach them;” “hold on had to let the dogs in and try not to fall geting the door open and bribing with treats.” All of these are little comments that have undertones of Mom’s MS sprinkled throughout. They are comments that in the past may have made me sad as I interpreted them to all signal a digression in Mom because of MS.

I think the point to all of this is there was a time when I thought I’d never be able to absorb all of this into my life and let everything intertwine naturally. But now I believe it has in many ways. Normal conversation with these sorts of comments mixed in doesn’t bother me, it’s just natural. Mom having a walker, that’s normal now too. It’s a new normal.

At the end of the conversation Mom said “hang in there, I love you” before she hung up. It meant a lot. Not sure why. In may ways it made me think of how I am dealing with Mom’s MS- I am hanging in there and I am handling it all better. So in thinking about this I am giving myself a pep talk too- hang in there with life and eventually things will turn around too.

How do you get through moments when it seems like you just can’t win in life? What are your magic words of support to give to others- is “hang in there” ever used? It’s a beautiful day where I am sitting or I should say sitting looking outside…how is your weather transitioning into fall?

Two Years Ago

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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

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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?