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.

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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? 

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Sit and Stare.

I have a problem with control. They say the first step in getting over a problem is admitting you have it. So there. I said it. POOF! Now I want to be over it.

When I say control, I don’t mean I have an obsession with a clean apartment. Far from it. I don’t mean I have an obsession with order. Nope not that either. But I do have an issue with control I am trying to figure out. I have also been doing a lot of soul searching and praying and trying to figure out if Mom’s MS is teaching me a lesson- because there is a part of all of this that I am struggling with more than Sister K and different from Dad. I think today I may have figured out one piece of the lesson. I don’t have any control over Mom’s MS, Mom doesn’t have any control over it and more importantly I don’t have any control over how it is impacting my life and my family’s life.

Today I may or may not have gotten really frustrated and mad at Mom when I called her at lunch. I got frustrated over something silly. Seriously silly. I’m going to tell you what it was about because we are all our own version of family here and I am going to be honest- it was about college football tickets. My parents have two season tickets to my alma mater’s college games and Papa has two tickets. They are all together. This Saturday there is a game and we aren’t able to go. Papa is selling the tickets to a man who did some work on his house. I don’t know why but this frustrated me and I got mad. Mad because Mom didn’t understand the details. Mad because I thought there were other people we actually knew who we could sell them to. Mad because we don’t know this person but we do know other people who would enjoy going. Mad because this is something in the past Mom would have orchestrated and figured out seamlessly. I don’t know, that was part of the list running in my head. Instead now my 87 year old Papa is figuring it out, not making what I think is the best decision. As I ordered my iced tea from McDonald’s drive-thru and drove back to my apartment to each lunch, it hit me. I have no control over the situation. Zero control. Nothing astronomically bad is going to happen. This didn’t even involve something that serious. Football tickets.

You could say I got home for lunch and was frustrated. I was irritated with myself. Irritated with my lunch break feeling ruined once again. Irritated with how I had once again failed and lost my cool with Mom.

I decided to take a 5 minute mental break and just sit. Sit and stare. Let me tell you where the best place to do that is- with our cat Chloe. Looking out the window. Staring at birds. Because that is what Chloe does. She sits and she stares. At birds, at moving tree branches, at the rain, at anything and nothing all at the same time.

So I sat and I stared. It was peaceful.

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Do you ever take time to clear your mind? To think about nothing? To just sit and stare at something? Have you ever lost your cool over something dumb? Do you have a problem with control? Do you think I have a problem with control or do you think I still have a lot of digging to uncover the lessons I am learning? Isn’t Chloe the cutest? Probably going to see a lot more of her on here. She brings me a lot of peaceful moments of pause these days. 

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? 

The Warrior

This past weekend Husband’s family visited. I struggle sometimes because it is difficult to have a mother-in-law who is healthy and active and then have my own mother who is struggling and not as active. It brings to mind a lot of challenges internally for me and has pretty much since we got married. But this weekend, I really put those aside and tried to just enjoy the time with Husband’s parents and I found that when I did that things worked smoothly. My mind was more at ease. When I just lived in the moment, not worrying about the future with my parents and inlaws but instead just enjoyed the weekend…things just worked.

One interesting thing did happen though. We took Husband’s parents to a university basketball game. My father-in-law is having issues with his hip and may have to get a hip replacement eventually. There was a quite a bit of walking to get into the stadium. We saw an area for accessible entry and Husband and I walked up to ask a question about how to get to our seats from outside. The thought went through my mind to ask if we could enter in this specific spot, but I held back since it wasn’t my own parent. In hindsight I should’ve just asked and next time I will. Later, Husband told me he wanted to ask but didn’t know how. He said he didn’t know how to word it. He said he was unsure what was appropriate to say or unsure what they would say in response. He also said he thought I would’ve known exactly what to say in this situation…I deal with this all the time…and I am years ahead of him on this topic.”

And he was right. It made me take a step back and think of the lessons I am learning in the process of dealing with MS. Sure there are tough moments. There are also good moments. There are also moments of complete failure and moments of complete success. But through all of them I am learning lessons. Life lessons.

In no particular order, I offer you a few of my own personal lessons learned:

  • Don’t be afraid to ask for anything. What is the worst that will happen? Someone will say no. They might..but most of the time they won’t.
  • Chivalry for Mom exists 100%. People hold doors. People get out of our way. People don’t mind stopping their cars while we cross the street. We force people to press pause in a very hectic world. They press pause and watch. Sometimes they are impatient and rude, but for the most part they are kind. Blow off the rude ones but embrace the feeling of the kind ones.
  • Also realize people are selfish and are not paying as much attention to you as you think. They are not staring at you pushing your Mom in a wheelchair or getting in and out of the car. Even if they are staring they will forget shortly. Because strangers don’t really care that much about you..and take comfort in that.
  • Assume your plans will fail. Something will go wrong. Learn to roll with the punches of MS and the punches of life.
  • Stay calm. Mom is watching me and waiting for my cue. If I get stressed it means Mom will get stressed. And a Mom with MS who is stressed is a full on recipe for disaster.
  • Cherish the moment. Cherish the phone call. Cherish the experience. If Mom is having a good day, cherish it. Take seconds to remember it and embrace it. Don’t assume these will come everyday. But cherish them because the memories of these are what gets you through the tough moments.
  • Life is going to bring people into your life. Wonderful people you never imagined meeting. Realize these people are your support team and they are gifts. At the same time, people in your life who you always thought would be your support team are going to disappoint you. You will have to find a way to “let them go” realizing at times we have to clean out the old to make room for the new.
  • Keep perspective. Don’t sweat the small stuff. Realize the importance of MS in your life and the large place it holds in managing your daily stress level. With that being said, little things don’t deserve a big place in your stress level. They don’t deserve a place at all. Anything unnecessary that contributes in a negative way to your daily stress- get rid of it.

Only the strongest families are given MS to deal with- and even more so than that, only the strongest children (no matter what your age) are given a parent with MS. Life is going to give you the tools you need to get through it, but it is figuring out what those tools are and how to apply them in your life is hard. Find your tools and embrace them. And above all, remember we are warriors.

What lessons have you learned from dealing with a disease such as MS in either yourself or a family member? Do you know a child who has a parent with MS? Take a minute sometime to recognize them for what they are- a warrior.

New Year, New Perspectives

Happy New Year blogging friends- after a bit of a holiday hiatus I am back!

I am also curious…Do you make New Year’s resolutions? I am not big on them. The main reason is because I feel like if you want to make a change in your life do it, don’t wait for a new year to do it. But with that being said, there are a few I am making this year just because I am feeling like the timing aligns well with some changes I want to make in my life.

I thought I’d share these too since I figure that if you are reading this blog you know me pretty well even if we’ve never met in person:

My Superficial Resolution:
1. Stop picking/biting finger nails. This has been a looming issue for me. I actually think I picked it up from Mom which is kind of comical. But as a reward for stopping I made an agreement with myself that I’d treat myself to a manicure.

My Carry over from Last Year Resolution:
2. Cherish the Moments. I have talked a lot about this on here and it was a central theme throughout my holidays. Really trying to be present and almost take a mental snapshot of my time with loved ones or memories with myself that I let slip by or not appreciate. I felt like I really soaked up my time at home with Mom over the holidays, but I also really cherished my time at home. I cherished the little moments with Mom and with my family. I really want to strive to be better at this rather than always thinking two steps ahead or not being fully present.

My Epiphany Resolution:
3. “Evacuate MY dance floor.” I love to dance. This is no secret and I have talked about this many times on this blog. New Year’s Eve as I was staring at a football bowl game Husband was forcing me to watch by taking over our TV, I had a thought- I have really struggled with letting people bother me. The kicker is these are people who in no way directly influence my life on a daily basis. They are people from my past, people I only know about through Facebook or people who used to be friends and I am working through the ending of that friendship. The point though is I allow these people who I never interact with to control my moods sometimes. I allow myself to ruminate on their actions or words that were hurtful to me and in effect I end up in a downward funk. I am realizing though that my family is facing and is going to continue to face some trying times with Mom. And using her as my focus, if there are people in my life who I don’t think I can pick up the phone just to say “I am having a hard time” then those are people who should not be in my life. So in effect I will be asking them to “evacuate my dance floor.” I will not literally be informing them of my decision but I am going to internally hold myself accountable to evacuating them from my dance floor and therefore my thoughts. This is going to be my motto of 2013. Because I do believe I am hitting a point where friendships are harder to maintain, life is throwing bigger curve balls my way and I need to surround myself with people who I want to be surrounded by whether it is being in their company or thinking about them in my mind.

So here we go. Thank you for sticking with me as I kick off 2013. I love this blog and am so thankful for the people who have found it and read it- more than you know. I look forward to navigating 2013 with you by my side and knowing that no matter what life throws at me this year, I am lucky to have this place to come and deal with life.

How were your holidays? Do you believe in New Year’s resolutions? Do you think it’s important to take the time to “cherish the moment” everyday, not just during the holidays? Did you know there is a song called “Evacuate the dance floor”?…it may or may not be my new anthem 🙂

The Importance of Good MOMents

It’s a big day so it deserves a big post- Sister K officially has a boyfriend! I realize some of you may think this is funny or not that eventful but in my silly family of girls, things like this are a big deal. It’s also a big deal because I actually like this guy….as opposed to Sister K’s other “ghosts of boyfriends past” who I was not the biggest fan. Husband told me last night that he thinks it’s funny guys worry about meeting the Dad because in my family they should really be more worried about meeting me. Probably not my greatest quality…ha.

But today at lunch Sister K called me and we three-way called Mom. As I walked around on my lunch break we were listening to Sister K’s story, full of excitement, telling us about her new boyfriend, how much she likes him- lots of gushing and lots of happiness. I sat down on a bench and was listening to both of them in my ear, my best friends…and I listened as we all tried to take turns chiming in and catching up. I looked out at a tree and felt the crispness of the winter day and for a moment I wanted to freeze time. I wanted to freeze it because this moment- this is my life. It was a moment where we weren’t discussing MS. Mom’s MS hadn’t affected her mood. She was joyful and happy- allowing herself to be absorbed and wrapped up in her youngest daughter’s story. I could feel the love we have for each other while I sat on that phone. I realized that is what makes us so strong and our bond so unbreakable in the really tough moments. It’s these moments of pure bliss that build us up so we are able to fight hard in the tough moments. And as I have been trying hard to do lately, I paused for a moment and allowed myself to embrace and cherish this moment. It was a good one.

Have you ever thought about the importance of the good moments in life to form the bonds that help us get through the tough ones? When was the last time you wanted to freeze time? Does your family make a big deal about silly things? What do you think of the phrase “MOMents”?

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?