A Different Kind of New Year’s

New Year’s Day is usually synonymous with optimism for the new year, resolutions, relaxing, organizing, and enjoying a well deserved day off. This was my plan heading into 2014 but I soon realized that was not how I was going to spend the first day of 2014.

Husband and I traveled home to be with my parents for New Year’s Eve because we had a wedding for a family friend to attend. We were running late as usual because it takes Mom a long time to get ready. It then takes a long time to get in the car. And as I watch Dad do this I fear every time he is going to hurt himself. We missed the ceremony but showed up in time for the reception. I watched Mom as she repeated herself several times about a group picture she wanted to take. Not repeating to make sure it got done but repeating to because she thought it was the first time she said it. I started to cringe a little bit. We then had to maneuver her around across cobblestone rocks that hurt her legs. We then had to find a good spot inside for her to sit. And the list went on and on. I sat there at the table just kind of tired and mentally out of it. Thinking these used to be fun and care free events for my family and now they just aren’t.

But we rang in the New Year at home with Mom and Dad. We had champagne and chips and queso. Husband and I opened belated Christmas gifts. It was a nice ending to the year.

New Year’s Day was frustrating though. It was frustrating because Husband and I had planned to get up and leave early. I quickly realized after waking up that wasn’t going to happen. It wasn’t going to happen because Mom had invited Papa over for a big spaghetti lunch. She kept saying Dad could take care of getting everything ready but there was no way Dad could take care of everything because he was busy taking care of Mom. A whole separate issue going on right now too. I realized I had to stay. I had to stay to get lunch fixed. Mom had envisioned this lunch in her head and even though I felt it was unrealistic, it was too late and I needed to execute it. So I did. Husband and I stayed around and didn’t leave to drive back to our home until around 4 getting home around 7pm.

I felt happy I could step in for my parents and help them out. I also felt frustrated I had to step in to help them out. I also just felt defeated. I feel defeated by MS right now. I feel angry it is in our lives. I feel helpless about what to do. I feel sad for Dad and everything he is going through as Mom’s caregiver. I feel clueless about where it is going. I feel hopeless and then I feel guilty for feeling hopeless. I feel selfish for saying I miss Mom and I miss the way things used to be. I am feeling a lot right now. I don’t understand what 2014 holds. I know where we were a year ago and I know where we are today. I don’t know where we will be tomorrow. I am trying to take one day at a time but it’s hard. It’s hard when you can’t see a light at the end of the tunnel. You just see another day in the tunnel. And I am worried that 2014 is going to be a year of tunnel-filled days.

Wishing you health and happiness in the New Year! Thanks for sticking with me through 2013! 

Advertisements

A Thanksgiving Lesson

Husband and I traveled to my family’s house for Thanksgiving this year. Sister K spent Thanksgiving with her boyfriend’s family and with Mom primarily bedridden right now, I wasn’t sure how the holiday was going to go. I am big on traditions- the tradition of seeing Mom in the kitchen cooking, everyone together eating, etc etc. Because of this I was honestly a little nervous about Thanksgiving. But I realized a big Thanksgiving lesson- I realized at the end of the day, the purpose of the holiday is family, not food…and it is being thankful for present moments, not past traditions.

What am I talking about?

Well this year we ordered turkey and stuffing. We also ordered pies instead of baking them. Sister K is a teacher and was able to go home on Tuesday to help Mom cook some sides in preparation for Thanksgiving. Then on Thursday I cooked a few more sides and pretty much played hostess to our small family consisting of Papa, Husband and Dad plus Mom and me. Mom wasn’t able to cook anything like she wanted but I did have her cell phone and while I was in the kitchen trying to figure out sweet potatoes I was calling her (only 2 rooms away) to figure out what to do. Going into the weekend I was quite nervous- I was going to have Husband there and combine trying to make sure he is having a good time with a new dynamic in my family, a dynamic that is constantly changing. I had already talked to him about it a lot and he was totally fine as I deep down knew he would be…he reassured me constantly going into it saying we will just go with it.

And go with it we did. I am still processing the fact that in putting away any plans or expectations and “just going with it” I had a wonderful weekend. I also had a very eye opening weekend. I realized that Thanksgiving isn’t about traditional food, cooking together or Mom being in the kitchen. Thanksgiving is about being thankful. I made myself focus on the little moments of being thankful and I am so glad I did- because it was in those little moments that I found Thanksgiving and found the things for which I am most thankful.

And my favorite moment from the weekend- it didn’t involve Thanksgiving Day at all…

It involved Mom, me and Hallmark channel movies. Saturday night Husband and Dad went to go see a “shoot ’em up guy movie” and Mom and I stayed home. We made Thanksgiving leftovers which we ate in Mom and Dad’s room and watched back to back Hallmark Christmas movies. There we were Mom in her hospital bed, me laying in Mom and Dad’s bed with my high school purple fuzzy slippers, Hallmark Christmas movies on the TV and a daughter whose eyes felt very opened to what family and holidays are all about- it was honestly one of those moments I wish I could have lived in forever.

photo-20

Hallmark Christmas movies with Mom

Did I learn a big lesson in what it means to be Thankful? Yes. Did I also learn a big lesson in the moments I am thankful for? Yes to that too. I am trying to focus on these little moments more and more…especially when I am home and especially considering Mom’s MS doesn’t seem to be getting any better. These moments are going to carry me to the next moment. These moments will get me through the tough moments. We are given these little moments to remember that this is it. This is life. It is in these moments that I find pure bliss. I am making an effort to focus on these moments more, moments that I know can’t physically last forever but moments that if I take a minute to appreciate will last forever in my mind. It is these moments that I am thankful for this Thanksgiving season.

photo-21

Bring it Aisle 17.

Also, just because I love all of you here is a picture of husband and me this Thanksgiving. After dropping off Papa on Thanksgiving evening, we headed to Target to see if there were any deals we could score and this photo-op happened. Another moment I am thankful for and want to remember forever.

What little moments did you have this Thanksgiving? Do you think sometimes there is too much emphasis on tradition and not enough emphasis on the present? I am thankful for each of you and wish each of you a wonderful holiday season. Thank you for reading and sharing while I try to navigate this new part of life. 

10.25.13

This is a post I wanted to do last Friday but you know, life happened, work happened and here I am doing it 10.29.13 instead:

Mom’s birthday was Friday. It had been a long week and I bribed myself to get out of bed with Starbucks. Desperate times call for desperate measures.

photo-8

But I called Mom in the morning on my way to Starbucks to tell her happy birthday. She picked up the phone and I shouted HAPPY BIRTHDAY. She thanked me, we small talked for a minute but I could tell something was off. Something was wrong. And then she said “I’ve had better”…and then started opening up to me more and started crying. The nurse that takes care of her overnight had found some bumps on her arm that she thought were actually a rash that was contagious. Mom had some flaky skin on her legs as well and they weren’t sure if they were related. Mom was frustrated because she is wearing compression stockings all the time and figured it would probably be the reason for the skin irritation, not a rash. It was all around awful. Dad got on the phone briefly to say Mom’s day nurse was taking her to the doctor at 11 that morning. Mom also had plans to go out to a birthday dinner with friends and that was in danger of being canceled because of this rash. It was awful. Mom was upset. And I felt so overwhelmed with sadness and defeat that there I stood in a line for Starbucks on a Friday morning with my eyes filling with tears. This was unfair. It was amazing to me that it was a Friday morning, a happy time because the weekend is about to start, I was in Starbucks waiting in line for my favorite coffee and I was overwhelmed with sadness that was slowly turning to anger.

I got in the car to drive my very short drive to work and I just yelled WHY WHY WHY WHY WHY WHY WHY WHY. LEAVE MY MOM ALONE. CAN’T YOU LEAVE MY MOM ALONE.

That was the gist of my conversation with myself in the car. Then I got to go into work.

Fast forward to 11am, I got a text from mom that said the words “just dry skin.” As it turns out the doctor told Mom there was no rash and it was just dry skin. As I chatted with Mom over my lunch hour at 12 I told her, I think we need to have a birthday redo. I say we ignore this morning, and officially restart your birthday at 12:00 today. She thought that was funny and we went on to have a really nice conversation. Mom was alert, we were communicating well with each other and it was just an overall good conversation. It made me thankful and amazed at how the day turned around. It was something I wanted to remember.

But I guess in a lot of ways that is life and that is what makes our days- the days that I am supposed to be taking one day at a time. On this particular day I felt every emotion possible and I felt them all before about noon. What did I learn? Sometimes you need to sit in the car and scream. Sometimes when you stand in line at Starbucks you have more on your mind than your coffee order so be kind to the people around you because you never know what’s on their mind as they wait to make their coffee order. Sometimes you need to press restart on your day and just move forward….whether it is your birthday or just another regular day.

Happy Birthday Mom! I am glad you had a great day filled with a fun dinner with friends and topped off with three free desserts from your favorite restaurant!

Have you ever had to press restart on a day? Have you ever screamed in the car? Do you ever bribe yourself to get out of bed and start your day with a Starbucks drink? 

Change of Plans

I know it’s been awhile. A lot has happened. For those of you who follow my blog and for those of you who pop in every once in awhile here is a simple but long update:

Canceled Plans:
Last summer I began talking about a cruise my family was going to take. We were going to go on Royal Caribbean Cruise Line, we had booked accessible rooms, I had booked scooter rentals, I had spoken with American Airlines about special needs issues on the plane, everything was rolling on normally…but I was nervous. I kept wondering if we were taking on too much. Taking on too much with this vacation- to put it simply, Mom has lost the ability to walk. As we got closer and closer to the cruise departure day, departure day being next Friday June 7, I kept having this small voice inside wondering if it was too much…I would then quiet the voice by rationalizing my way out of it…then the voice would re-emerge…and I would quiet it again. But in the midst of this I was praying. Praying that if we weren’t supposed to go on this cruise it would be revealed to us and without that we would just keep moving ahead.

Last Saturday that decision was made. Our Grandpa (Papa) fell in the middle of the night in his house, broke his hip and to have a partial hip replacement. His doctor said he could not go on the cruise. This then set off a sort of chain reaction where Mom did not want to go, Dad could not go if Mom was staying behind and then for Husband, Sister K and me to still go did not seem right. It seemed like a different vacation and it would be sad to go thinking of all of us not together. I also could not stop thinking, we are supposed to cancel. We are being told we need to cancel. It’s too much. Obviously too much for Papa but silently too much for Mom.

I am not in any way saying this happened on purpose, but I do believe it gave us an answer we had all been fighting out of our heads for awhile – We are not supposed to go on the cruise. Luckily our travel agent had convinced us to get travel insurance. I am in the process of gathering invoices, payments, etc but we will submit them and be able to get our money back.

But the lesson in all of this and Mom’s MS has been very clear to me- I can no longer plan ahead a year in advance. No longer assume Mom will remain the exact same. A year ago Mom had just gotten out of the hospital and was going into a rehab facility. Our goal at that point was to get her back to walking on her old 4 wheeled walker ‘Pinky’ from the standard walker she was using. A year later our goal is simply to get her walking.

Understanding While Not Understanding MS
Seeing that part of MS has been difficult to me- difficult because part of me believes she could try harder and walk because people tell us all the time of stories of this happening. The other part of me does not know if that is how this works and not walking is just another step. Regardless it is difficult to see the added stress this has added to Dad. It worries me in many ways. The amount of effort being exerted, the lack of sleep to help Mom up multiple times in the night, the nonstop nature of his days- not even ending when he sleeps. It’s difficult.

Process Overload
As you can see it’s been a lot. A lot I am processing and this is the first time I am writing it all out. The cruise cancellation is very fresh..less than a week to be exact. The reality of not going mixed with the reality of the unpredictable nature and path of MS is all slowly coming into place.

A Quick Life Update on Me

  • Husband graduated with his MBA, was offered a job and we are moving to a new city- still in the same state, about 3 hours from home instead of the 1.5 I enjoy now. Sister K will continue to live here so this will be adjustment for us.
  • I recently got a job offer in our new city and am going to be the new Public Relations Manager for a nonprofit organization. I start in three weeks and I am very excited! Knowing how difficult job searching is and having gone through the difficulties of it every other time I have searched for jobs before, I feel incredibly fortunate and blessed.
  • Also Husband and I adopted a 6 year old cat named Chloe. She will probably make an appearance on here at some point- we are pretty obsessed with her 🙂

I thank you for continuing to read as I sort through Mom’s MS.

Have you ever had any vacations canceled? Do you have any thoughts on the path of MS? How have you ever all of a sudden had a big reminder that life really is day to day, especially with MS? 

Rambling Under The Sun

Mom is undergoing a steroid infusion this week. Every evening someone from home healthcare has been coming to our house to give Mom an infusion. Becuase of her decline the past few weeks, her physical therapist thought she may be having an MS exacerbation. My parents quickly made an appointment with her doctor who prescribed the steroid infusion to get her strength back.

I have to be honest, I didn’t think much of this. I didn’t think this would really make much of a difference and had started trying to reason my way through the changes in Mom. I am continuing to do this. But something strange happened this week- the steroid infusion began and I have felt through phone calls with Mom that her presence and spirit are back.

Today at lunch I was going to go run some errands and just called to check on her really quick. Really quick turned into 45 minutes….she was so tuned in, talkative and upbeat that I couldn’t bring myself to get off the phone. I soaked up every one of those minutes as I wandered around outside. We talked about the same things, she was rambling repeated comments a few times but I really didn’t care. It was just so nice to be able to talk to Mom…really talk. She wasn’t loopy or tired or out of it. She was Mom.

I know this may not last. I am very aware that this is most likely a result of the steroid in her body right now. But I also don’t care. I enjoyed this afternoon so much and felt so revived coming back for the second half of my day. It all ties back into living in the moment with Mom. I have been having tough moments the past few weeks. But today was a good one. It was one that I want to cherish.

I am heading home this evening to actually see Mom and Dad. Husband and I are attending a wedding with them tomorrow and then I will be staying there until Wednesday morning because Dad has to go out of town. He likes for either Sister K or I to stay with Mom if he is traveling overnight. I know we most likely won’t be able to do this forever but for right now we are both in situations that allow us to, so we do. It will be nice to be home and nice to spend some more time with Mom. More time working on my patience and working on living in the moment. Hope you have a great weekend!

Soak Up The Smile

Do you love Starbucks? I do. Even though I am not coffee obsessed, I do love a Starbucks drink. I especially love a Starbucks drink when I am feeling exhausted…like right now.

I was talking to Mom this afternoon at lunch and telling her about everything I’d been up to with volunteering for this coat drive. While I was talking to her she was engaged, listening and really taking everything in- this may not seem like a big deal to most people, but it was a big deal to me. It meant Mom was having a good day. It made me smile.

I told Sister K about it later and she was excited too. It’s not because we never have good days or good moments with Mom; however, we realize that when we do have a good conversation, where everything seems to be clicking and aligned, it is important to cherish that moment. To truly appreciate it. To not take it for granted.

One of the biggest lessons I have learned through dealing with Mom’s MS has been don’t take any moments for granted. Cherish the good ones and remember them. Allow yourself to be happy and really feel it when something positive occurs. So today when I got off the phone, I allowed myself to smile and to soak up the happiness from that smile- to smile a smile that said I may be 28, but I just had a great conversation with my Mom and she is proud of me!

Do you allow yourself to truly cherish moments of happiness? Have you ever found yourself taking good moments for granted? Do you enjoy a Starbucks “pick me up” from time to time too?

There Will Be Bad Days

Good days and bad days. I struggle with this saying even though it puts things into perspective. In my mind this is the kind of phrase said about my Grandmother with Alzheimer’s, not my Mom with MS. It is a phrase people use to speak about their elderly relatives, their aging grandparents, not my 59 year old Mom. But at the same time, it works. It is an easy way to sum up this life I am living with Mom’s MS. It is an easy phrase for me to focus on, so I don’t get frustrated by the turn of events that can occur in one day.

I was home visiting my parents this past weekend. Friday night when I arrived Mom was doing great. Her physical therapist Coach C was there and she was doing her exercises and in a good mood. On Saturday, Dad, Mom and I went to lunch and then Grandpa came over for pizza and to watch college football. Our college team won in a 4th quarter finish after playing horrible the entire time. It was an exciting and fun evening.

But, Sunday was different. From the moment Mom woke up Sunday she seemed off. She seemed to not be moving around very well. Very tired. Just “out of it.” We picked up lunch and took it to my Grandpa’s house to eat before I left town. She was very tired and wanted to lay down. She didn’t talk too much. It was just strange and tough and weird. I was thinking how did we go from yesterday’s great day to this barely 24 hours later.

The only explanation- good days and bad days. I don’t want to admit Mom has good days and bad days. To me it means everyday there is a chance it could be a bad day. I can’t assume it will be a good day. I also have to learn to deal with the bad days. Learn to react, not let them bother me,and not take them so personally. It all ties back to taking life “one day at a time.” By saying there are good days and bad days you are essentially making a commitment to taking life one day at a time. Because you don’t know if it will be a good day or a bad day. But I am selfish and I want all good days. I don’t want the possibility of bad days. I also don’t want to use the same phrase so often associated with people’s elderly relatives. I don’t like Mom being lumped into that category because people so often do it. But unfortunately for me, the bottom line is that’s what this was- it was a bad day.

I need to find a way to not only tell myself this to believe it – Mom had a bad day. It’s going to happen and it’s okay when it does. It’s not the end of the world, it’s just a bad day. There will be more good days just like there will be more bad days. Take it one day at a time.

Have you every struggled with the phrase “good days and bad days”? Do you believe it’s important to remember to keep things in perspective when dealing with a disease like MS? Do you find yourself prone to catastrophic thinking sometimes…where one bad day means a million more bad days? Are you as frustrated with me as I am that I can’t seem to just take life “one day at a time”?