Stuck in The Middle

My family is evolving. Our dynamic is evolving. Part of this is a natural evolution and part of this is on account of Mom’s MS. I have mentioned before that my family has never exactly been the most punctual family in the world. But these days we move very very slow. It can take Mom a good 15 to 20 minutes to get from the living room into the garage and into the car. That is assuming everything is ready to go. Sometimes it can take longer. We are all learning to adjust to this. We are also learning the many definitions of the phrase “time to go.”

There are now 3 steps to planning when we want to go somewhere: 1) Determine what time we want to arrive at our location 2) Determine what time to leave 3) Determine what time we need Mom to be ready and how long it will take to get her in the car. It is a process to put it in the simplest terms. There is no more rushing out the door anymore. We don’t rush. If we are running late than we take a deep breath and realize we are going to be really late. That is how things go.

Sister K and I are getting more used to this. More used to just hanging out, not rushing to get out the door, realizing that going out to lunch may mean we are eating lunch at 2:00. It may also mean we are eating lunch at 3:00. Going out to dinner could happen at 8:00 or 9:00. Things are just on our own time now. Our own schedule. But, I also have another person in my life I am balancing who this does not come so natural to…Husband.

It is one thing to be experiencing the waiting and being late when it is your immediate family. I believe Sister K and my tolerance for the situation is higher because it is our Mom. We also weren’t raised in a very punctual family to begin with so in many ways this is just a bigger extension. Husband on the other hand comes from the polar opposite. Where my family would be 10 minutes late, his is 10 minutes early. His Dad is always in a hurry to get out the door to get somewhere not on time, but early. When I visit his family if we say we are leaving at a certain time I know I have to be ready at this time. This is part of being married. Adjusting to other families. But in many ways it is a little easier for me to adjust to his family norm when it involves time than him adjusting to mine.

We had a little tiff because of this over the weekend. Husband and I drove in for a quick visit to see my parents Saturday morning because Husband needed a haircut. Then we were going to go to a quick lunch with my parents and head back because Husband had some things he needed to do later in the afternoon. We only had a short time to be home. We began to have issues though when it was taking Mom awhile to get out the door, therefore pushing lunch back a little bit, and making Husband a little uneasy because he had study plans in the afternoon. I feel very caught in the middle when this happens. I am caught between my husband and my family. Caught between two situations that both make sense. Husband is working on his patience but I realize it is a lot to ask of anyone. He also realizes this is what he signed on for when we got married. But it’s difficult because this requires him to be the one to change because my family simply cannot meet him halfway on this. Mom cannot move any faster and we are truly going the fastest we can.

I guess what I am saying is the nature of my parent having MS is one thing. I tolerate more as I should because it is after all my Mom. But when you add additional people into the situation it requires tolerance and patience from them too. It is not necessarily a natural transition. I know we will get there, but I also know it isn’t easy. We like to say Mom doesn’t have MS, but we have MS. But that becomes a little more complex when the dynamics of the family grow and new people have to interact with our MS. MS affects everyone, not just Mom. It affects all aspects of our lives and it will continue to impact new areas of my life just as I think I have a hold on them.

Do you think it is natural to have more patience with your own family than others? Do you see how this could be a difficult situation for Husband? Do you find it interesting when you find a new situation being impacted by MS in your life?

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My 28th Year

I am struggling with this blog.  Struggling because there are a lot of feelings I have about Mom’s MS but also because I worry I am consuming myself too much with it.  Then again it is a big part of my life.  I also wonder if what I am writing even matters.  If it even resonates with anyone but me.  I want to make it more personal but am trying to figure out how.  Make it about Mom’s MS but my journey with it.  How this is impacting me personally.  How this is changing me.  How this is launching me 30 years ahead in life in some regards but I still feel exactly the same in others.

I turned 28 on Monday.  Happy Birthday to me.  On Sunday as I was reflecting on the past year I was on the phone with Dad who was struggling, phsyically struggling.  Mom had been having severe pains in her legs and hadn’t been able to sleep for several nights.  They had been to a few doctors last week for her swollen ankles, her primary care and her neurologist.  They changed her medicine, took her off medicine but nothing seemed to be working.  Dad took her to a doctor Sunday who gave her a muscle relaxer just to try to help but instead of helping it made things worse.  It essentially turned her muscles to jelly.  To make a long story short Dad spent several hours maneuvering and figuring out how to get Mom into bed.  She was on the floor at several points.  I was on the phone with him a couple times throughout this.  He finally had success and finally got her situated at about 11pm.  A process that began around 8pm. 

I layed in bed reflecting.  Thinking 28 years ago Mom was in the hospital.  We were hours away from meeting for the first time.  Nothing more than a mother and daughter.  A healthy mother and healthy baby.  I began thinking of the past 28 years.  Thinking of where we were today.  How did we get to this point so soon.  I was sad.  I allowed myself to lay in bed that night sad.  Thinking and sad.  Going over life, plans and how things can happen that you never imagined. 

I made a decision that this next year I would focus on myself and clearing out some clutter in my own life.  Internally and externally.  I am doing my own Happiness Project inspired by this book and the corresponding blog.  I am going to spend the next year becoming the best person I can be so I can help Mom to the best of my abilities.  I am realizing this next stage of this battle with MS is going to be largely mind over matter.  It’s going to test me in ways I have never been tested.  Test my mental strength, test my ability to resist the negative and test my family. 

I am writing this here to hold myself accountable.  It’s going to be an interesting journey but one I am hoping is full of successful changes and new tools to use as I deal with Mom’s MS.

Smile Through The Pain

Sister K came to pick me up so we could do some Spring shopping together yesterday.  Once I hopped in the car she proclaimed, “I want to call Mom.”  So we called Mom.  We put her on speakerphone and chatted with her en route to our favorite store.  She felt like she was there and it made us feel like she was there too.  We talked about what we were doing, our plans, what we were shopping for and what we had been up to all day.  Mom said it had been a tough day because of her leg spasticity with issues that began in the morning.  We listened as we always do, talked about it a little bit without getting too deep and then lightheartedly changed the subject. 

I often wonder the best way to respond to my mom when she really opens up about her symptoms, when she really tells me how she is feeling.  Do I tell my mom I understand even though there is no way to completely undertand.  Do I pursue my first inclination to be the problem solver, the problem solver who often ends up putting her foot in her mouth.  Or do I do what Sister K and I did, lightheartedly change the subject so she doesn’t have to think about it. So I don’t have to think about it anymore.  This part is murky for me.  Murky because I enjoy relating to people, understanding them and trying to help them.  Murky because for the first time in my life I feel like I struggle with relating and I struggle with responding.  Especially murky because it involves one of the most important people in my life.    

I try to think of myself and if it were me with MS, how would I want people to react, what would I want them to say.  The answer is I don’t know.  I don’t know because I don’t even know how I want people to react or what I want people to say to me about my mom having MS.  I seem to struggle with this because if they say one thing I wish they’d said something else, if they say this I wish they’d said that.  Nothing is good enough for me so I wonder if my mom feels the same way.  I have never asked, never thought to ask.  I don’t know why.  I wonder if she doesn’t know the answer either. 

So what do I do while I search for the perfect response, I change the subject.  I find a silly thing to think about, to talk about and to laugh about.  We all laugh.  Sister K and I take turns finding the silly change of subject and we laugh.  During tough times we keep our conversations lighthearted.  Senseless.  Ridiculous. The more outrageous, the better.  We pride ourselves on these silly comments, crazy conversations, strange phrases only our family understands.  We use these as our crutch.  Sister K and I use these tools to bring a smile to Mom’s face, we can see it in person and feel it over the phone.  Laughing and smiling.  Our family’s greatest weapons against a disease that is trying to attack our laughter and smiles everyday.