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.
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?
I am having a hard time. There I said it. I am having a hard time. I don’t have a handle on this and feel like instead of getting better at handling Mom’s MS I am getting worse at it. To the outside world I tend to seem like I have it all together. I talk positively, I say all the right things, sure it’s tough, I am dealing with it, I am fine, etc etc.
Inside I am feeling differently.
Inside I am struggling. Inside I feel lonely. Inside I miss my Mom even though she is very much still here. For the past five years since I started working Mom and I have spent the majority of my lunch hours on the phone. Lunchtime chats is what we fondly referred to these conversations. I wandered around outside, talking about my morning, talking about life, just talking and then when my lunch hour was over I went back to work and Mom continued on with her day. These carefree conversations were something I never gave much thought but I could depend on them no matter what kind of day I was having- and in the course of starting new jobs, changing cities, managing challenging situations there were many moments where these conversations were what got me through the day.
But now things are different. Mom isn’t as sharp as she once was and I am not sure if that is the MS, the amount of medicine she is on or a combination of both. But regardless our conversations are not the same. There is a lot of repetition and a lot of simple topics that are not too complex. There are times where I just need some advice but I can’t get Mom to understand the story and in those moments I feel frustrated. There are times I call and Mom may be having a bad day or be in pain and in those moments I feel sad. There are times when we are having the exact same conversation we have already had before and in those moments I feel stressed.
When I get off the phone I am typically not in a better frame of mind than I was before and I need to shut it off and go back to work or go back to life….and that is hard. I feel like I am living a double life in my head- the person who has it all together / the daughter who feels like she has nothing together…and I am having a hard time managing it.
I need to come here and talk about this. I need to continue to talk about this. I have faith I’ll find a way to positively handle this new chapter in my journey with Mom’s MS…and I think a big part will be holding myself accountable about my true feelings here so I can begin to manage them.
How do you manage multiple emotions and situations going on in your life? How do you manage the tough parts while living the good parts?
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!
It’s been a strange week of talking to Dad on the phone about MS, Mom, how we are dealing with it, how we are handling it. There is a lot of frustration, a lot of questions, a lot of sadness. I think the main question that keeps coming up is “Why?” Why is this happening to us? Why was our family chosen to deal with this? Why doesn’t Mom want to try harder to fight this? Why can’t Mom improve like other people we hear about who have MS? Why is this so hard on my parents? Why does Dad have to be dealing with this along with everything else? Why.
We want to know why because this journey we are on with MS is painful. It is painful to watch and painful to live. Today was painful. I called Mom as I usually do on my lunch break around noon and she answered. She sounded a little out of it. I tried carrying on a conversation with her but felt like I couldn’t get her to focus. She asked me a question or two but I knew she wasn’t really listening to my response. Twice I couldn’t even understand what she was saying because her words almost sounded slurred. She said she was laying down and it seemed like she was literally dozing off- so I got off the phone. The conversation hurt me. It hurt me because it shines a bright reality light into my eyes that Mom very much has MS and she is actually not getting better. It’s easier for me to not focus on MS when I can call Mom and we can chat somewhat normally…when she is having a good day. But today was not a good day and with that comes the reminder of the pain of this disease for all of us. Mom is changing. It is reality.
I called Sister K to tell her about this and Sister K told me she was sorry and that Mom was probably tired. She seemed a bit frustrated because she felt I was seeking more of a response from her…I honestly wasn’t. But when I got off the phone I was left wondering what did I want? Why had I called Sister K to share this with her? She can’t fix it and make it go away…did I secretly want her to? Or did I just want to tell someone what had happened because I felt sad. I didn’t feel angry; I wasn’t asking why me; I just felt sad.
It is one thing to talk to Dad about Mom’s decline but it is another to experience it. It feels even bigger to experience it all alone on the phone. I was surrounded by people walking on the streets, yet I felt all alone. I think the person I really wanted to talk to was Mom and I was painfully realizing in many ways, at that moment, she wasn’t there.
Have you ever been surrounded by people yet feel all alone? Have you ever called someone after something tough but not really understanding why you called them at all? Do you experience moments where the light of a reality you try to conquer is shined brightly in your face?
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”?
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?
I have a little bit of a routine when it comes to calling Mom. I do it everyday at lunch as I have pointed out and talked about before. Today I called her while I was walking to run an errand. She didn’t answer the first time I tried so I figured she was just a little farther from the phone. So then I tried Dad’s phone and he didn’t answer. I’ve been trying to call Dad periodically just to check on him and see how things are going.
Mom called back and we chatted for a little bit but then I needed to get off the phone. When I got done, I noticed I had a missed call from Dad, so I called him back. We talked while I walked back to work. I have to take advantage of this time because typically he is around Mom and isn’t free to discuss everything. I never called Mom back. I told her I was going to, but I didn’t. I had just a few minutes and was debating if I should call Mom quickly but then I had this awful thought- Mom is probably not even going to remember I told her I’d call her back…or if we get on the phone we aren’t going to have anything left to talk about…so I didn’t call her back. I didn’t think much of this. Normally I might have but today I just didn’t.
Fast forward to 3:00 today, my phone rings and it’s Mom. She said “I thought you were going to call me back? I wanted to hear about your trip and the wedding this weekend.” She didn’t sound upset but just friendly and cheery. I was able to talk to her a little bit at my desk but then I had to get back to work. I also immediately felt bad because in my eyes she was having a good day/a good moment and I missed it.
It’s tough. I feel bad because I usually do have those thoughts but I ignore them. I push them away and do what I know is right. Today though I listened to those thoughts and in listening to those thoughts I pushed aside Mom. Pushed her aside like she didn’t matter and she does. I also don’t think I realize how important our daily chats are to her. Sister K has told me this as well. She said you don’t know how much Mom looks forward to those conversations. Today I ignored that thought as well. I feel like I was a little selfish and that’s not how I want to act. I don’t want Mom’s MS to interfere with my relationship with Mom and today I let it win. Lesson learned. I now know what it feels like to let those thoughts win and I don’t like it. I’ll do better next time.
*I guess I felt I needed to come here and be honest- and confess these thoughts to someone. Thanks for being that someone.*
Have you ever had moments where you don’t realize the importance of your actions? Have you ever felt bad for something as simple as not making a phone call? Do you like to talk on the phone while you walk around?