MS has changed my family in a lot of ways and it is continuing to change my family in a lot of ways. My family that I have always been fiercely proud of and very protective over is changing in ways I cannot control. It is changing Mom, Dad, Sister K and me. Changing the way we interact, changing our dynamic at home, changing our activities- it is changing us.
This past weekend really shed a light on those changes as Sister K brought her boyfriend home for the weekend to celebrate Easter. All weekend I tried hard to fill in the holes that Mom should’ve been responsible for with a guest at our house. I didn’t mind but it made me realize even more that this is my role now and I needed to step into it for Sister K. I feel like I am doing that a lot in many capacities in my family- filling in the holes of where Mom cannot anymore.
But as the weekend ended and we were heading back in the car I was talking to Husband and I got upset. I felt uneasy after the weekend and couldn’t figure out why- and then it hit me…I was mourning in many ways the loss of my family as we were and realizing what we have become. I was sad because Sister K’s boyfriend will never know us without Mom’s MS. Because Husband and I started dating in college, he knew Mom before her MS and knew our family dynamic without all the extra added stress. At this point in my life I can define all relationships into two categories- those who knew my family before MS and those who knew us after MS. There are pros and cons to being on both sides of the line but I know that those who knew us before knew who were were- knew how we operated- they knew our true family. Those who know us now I am not so confident of the picture they get. I don’t know what they take away after meeting all of us in our current dynamic.
I still love my family very much and I am still obsessed with the people I am blessed to call parents, grandparents and of course Sister K…I would not change them for a minute. But I still feel like I am mourning the loss of my family as we were and realizing with both eyes open the family we are becoming.
Have you ever experienced changes in your family that make you aware your family dynamic is changing? Are there people in your life who know your family in the past as opposed to who they are in the present? Does what I am talking about even make any sense?
I was home for a few days two weeks ago to stay with Mom while Dad was out of town. I had a love/hate relationship with those two days. I loved being home. I loved staying with Mom and spending time with her. I hated everything that had to do with MS. I hated how it tested my patience.
It gave me a great sense of appreciation for everything Dad is dealing with when it comes to Mom. It also made me feel like a failure because I can’t seem to handle everything as smoothly as he or Sister K does.
After quite a bit of soul searching, I think I may have found the root of part of this- I need to slow down. I like to go-go-go. I am a planner. I am always one step ahead and thinking one step ahead. This way of living, feeling and thinking does not work when your Mom has MS. Because these tendencies are pretty heavily intertwined in who I am…in may ways Mom’s MS is fighting constantly with who I am.
I came to this realization about halfway through. I then felt really frustrated with myself. I spent the rest of my time home trying to mentally slow down. Physically slowing down is one thing. But mentally slowing down and focusing on the present with Mom is tough. But I tried. And I was successful for a day. I know it’s a day, but it is some sort of proof to myself that I can do this…baby steps.
So here comes my new challenge, the mental slow down.
When I am in the presence of Mom I need to make a conscious effort to mentally slow down. Fight my urges to speed through our time together and get lots of things accomplished. Instead slow down. Realize I am not going to accomplish that many things. Most importantly realize that is okay and realize the important part is the moment with Mom.
Do you ever had a tendency to try to speed through life? Is it easier to physically slow down than mentally slow down? Do you ever get the two confused?
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.
Do you tend to think positively? Are you immediately optimistic when life throws you a curve ball? This is not my best trait I must admit. I tend to think a little more pessimistic than optimistic. It is something I would like to change and sometimes I am good at my efforts to change and sometimes I am not.
One area that I seem to struggle with positive thinking is where Mom is concerned. Dad and Mom are meeting with their therapist tonight. Dad called me today and left me a real uplifting message about how he had spoken with the therapist and he had some great ideas and he felt good about everything. His outlook was better than this time yesterday afternoon when he felt frustrated. I must admit I struggle with this. I don’t know if I am just being pessimistic, if Dad is being overly optimistic…or if one of us is being realistic and the other isn’t. But I have my doubts. I guess I just feel like not much is going to change where Mom is concerned because she doesn’t want things to change. And I feel I am admitting that to myself. But when I talk to Dad and hear him so optimistic about Mom improving I begin to feel like I am just being negative. Like I am not thinking positively. I feel wrong for thinking in this way but I don’t know how to change it…or the big question of if I really should change it.
Do you ever struggle to think positive about something after so many negative moments in the past? Do you think sometimes we can mistake negative thinking with realistic thinking? Do you think we should always strive to think positively?
I love gloves. I notoriously have cold hands and gloves provide the ultimate in warmth. I wish you could wear them year round but it is only really acceptable to wear them in winter. But I was thinking today how gloves provide me the ultimate cover up, enabling my hands to stay warm and function. It got me thinking about how we cover up things in our own lives.
Dad called me today because he and Mom are going to meet with a therapist again tomorrow night. It was advised to Mom and Dad after her last doctor’s visit that they needed to see someone. The main reason is Mom is not admitting to herself or dealing with her MS diagnosis. They met with someone in December and will meet with the person again tomorrow night. I had been asking Dad if they had another appointment scheduled but he thought that with the holidays things seemed to be improving. But now in the second week of January it seems as though we still have the same issues, just a new year.
Dad mentioned Mom’s MS doesn’t seem to be improving and her mobility seems to be getting slower. It is also becoming a little more difficult for him to assist her. These are little things but little things that are big things. He asked if I had noticed anything over Christmas and I said honestly, I think Sister K and I are just turning our head the other way. The holidays were not an appropriate time to bring up this argument again but in many ways I think Sister K and my days of bringing up this argument are gone. I think we have done everything we can and now it is up to Mom.
Someone gave me some good advice once: She said people speak verbally and non-verbally and their non-verbal actions typically mean more than their verbal actions. Mom’s non-verbal actions are very honest and when I stop to think about and look at them they tell a very honest story. The avoidance, the lack of initiative, the negative attitude at times, the contentment with where things are- they tell a lot. A lot that I can’t really write about because I am still working it out in my mind. It’s a cover-up. A cover-up that allows Mom to stay warm and cozy within the life she wants without getting out in the cold and beginning to deal with things. It’s a cover-up that I am not sure any of us have any tools left to uncover. I think Mom may be the only one who can do it.
Do you ever cover things up or not deal with issues in your life? Do you think at a certain point you just can’t push someone to deal with things anymore? What is your favorite thing to wear to keep warm during winter?
On December 23, Sister K, Mom and I all headed to the mall…Husband and Dad headed to the movies together. It was girl time/best friend time/mother-daughter time/all of the above. We were done with our holiday shopping but went to enjoy the sales, soak up the frenzy of the pre-Christmas chaos and spend time together.
As I was there I saw other families together, other mothers and daughters but for the first time I didn’t feel the instant twinge of jealousy I used to feel. Sure Sister K and I pushed our Mom around the mall instead of walking beside her…but instead of focusing on the differences between our Mom and other Moms…I just focused on being with Mom. We had a wonderful day. We wandered around, in and out of the stores, showing Mom things, trying clothes on, stopping to grab something to eat, and to insert a line from a familiar Christmas tune “laughing all the way.” It was a special time and the perfect way to leave the cares of my life behind and become focused on being home with my family for Christmas.
I felt very blessed by the relationship I have with Mom and Sister K. I felt blessed that I “wanted to go home to spend time with them” as I listened to people complain about being home with their parents for holidays. Instead of thinking of the frustrating cards we have been dealt with Mom’s MS I thought about the good cards I have been dealt with my family. I am learning to take all the cards I’ve been dealt, the good and the bad, and to make it work. And if it means taking turns pushing Mom around the mall in her wheelchair, sometimes having some minor issues with navigating through doors, and sometimes taking up too much space- I’ll do it. I’ll do it because as I sit here today I don’t remember those things, I just remember the time spent with Mom.
So a week after Christmas and with the holidays behind, here are some pictures of
Sister K and Mom “rolling” around the mall:
Enjoying the lights of the season
Avoiding the cobble stones to the left- we learned Mom isn’t a fan
We also learned Mom’s wheelchair doubles as shopping bag storage
Did you do anything special with your family over the holiday season? Do you ever focus on the negative cards you’ve been dealt and overlook the positives in the process? Does anyone else enjoy going to the mall to enjoy the pre-Christmas chaos or are you among those still doing last minute holiday shopping up until Christmas Eve?
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 🙂