Tag Archives: family

We’re Gonna Dance

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This past Saturday provided a small but much needed “life break.” We had a wedding to attend for D, the daughter of one of Mom’s college friends. Mom’s college friends are her best friends and these get togethers are always ridiculous and full of laughter. They all have kids around the same age so needless to say there have been a lot of weddings the past few years between everyone’s kids. They are always fun and we always look forward to these occasions.

But this wedding weekend felt a bit different because of everything that had gone on the past 2 weeks. My family was tired. We were nervous. A Saturday day trip brought a lot of unknowns. I wasn’t sure how everything would work with Mom. Sister K kept telling me I shouldn’t worry about it, I just needed to let it come. She said if I worried I would work myself up before anything even happens. In hindsight she was right. I shouldn’t have been so worried about it, but I still was. 

With the rules of Mom’s rehab facility she can leave during the day after PT/OTbut has to be back by midnight. D’s wedding was taking place here, where Sister K and I live. What was going to be a fun weekend trip became a day trip. The original plan changed. With Sister K’s help, Mom planned a big lunch for everyone at a restaurant in the afternoon so we could all spend time together before the wedding. Mom is the planner of her group. That is where I get it from.

Mom and Dad arrived in town, we met everone for lunch, Mom went and rested, then we met back up with everyone at the church for the wedding and reception that evening. As usual we were late for lunch, barely on time for the wedding. I now say that with a smile on my face. A smile because we are doing the best we can and I am learning to roll with that. If we are only 30 minutes late then we have succeeded. We may be late but we do make it and that is all that matters. Mom used her wheelchair Saturday and we took turns pushing her around. Her friends were so excited to see her and you could feel the energy change when she showed up. They all took turns sitting next to her at the reception, sharing stories, gossiping and laughing. Dad loved that they kept sitting in his seat to talk to her. This night was important for Mom in more ways than we know. It revitalized her. She got dressed up. She did her hair and put on make up. She had on her nice jewelry. She looked very pretty. I was so proud. I knew she felt good. Look good, feel good. Our whole family needed it. 

There was a moment during the reception though when Maroon 5 Moves Like Jagger came on. Sister K and I were already on the dance floor. Sister K knows how much everyone in our small family loves this song (even though she does not) and proclaimed, “We gotta go get Dad!” So we ran over to the table, interrupted Dad’s conversation and made him come out on the dance floor with us. Sidenote regarding my family: This isn’t exactly an odd thing to happen. We are a dancing family. Dad and I danced to Abba’s Dancing Queen at my wedding as our Father/Daughter dance. We love to dance. In fact Sister K and I had already decided ahead of time the best way to avoid having to talk to other people about Mom was to never leave the dance floor. We had decided “We’re going to avoid everything and we’re just going to dance.”

But this moment of dancing and smiling felt different. I had an overwhelming feeling of admiration for my family.  Here were three people who have had their lives turned upside down in the past 2 weeks. And it’s not over. Things will still continue to be a rollercoaster. But in that moment we were full of smiles. Holding hands with Dad on the dance floor. Acting goofy. Full of life.  

This weekend was not without its stressful moments. We haven’t been given a magic wand to make life stress free just yet. There was the trickiness of moving Mom around in her wheelchair, getting her in and out of the car, trying to appear that everything was seamless to others, making sure Mom was feeling comfortable, etc. But even with the tiny moments of stress, the memory and the feelings associated with Dad out on the dance floor felt like a small reward for the tough moments of the past few weeks. It also reminded me that my family is tough. We are strong.

I believe only the strongest families can handle MS. I think everyone needs to remind themselves of that when things get tough. MS families each have their own qualities that bond them together. MS doesn’t break them but makes them stronger. Everyone pulls this strength from their own unique family personality. In their own ways everyday. For us, some days it is from laughter. Some days it is from random comments. But on Saturday night it was from dancing. I looked at Dad and Sister K and I said we are going to make it. We are going to get through this.

And we will.

How does your family cope with tough moments? Do you find strength in things as simple as laughter or dancing? Do you love a good wedding reception dance floor as much as I do? Have you ever caught a bouquet? Sister K actually tried instead of hiding in the back for the first time ever, and she failed miserably…  

Warning: I Am Angry

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Since I returned Monday I have noticed something. I am a little more short fused. I am letting my negative thoughts consume my mind. My fights are escalating. I am losing my cool easier.

I am angry.

I am. I am admitting it right here for the first time to myself. It has occurred to me maybe I am going through the “Stages of Grief” again. As if I haven’t already gone through them or continue to go through them with Mom’s MS. That makes me angry too. The fact that I feel like just as I feel I have reached “Acceptance” I am back behind in one of the other stages again. I am angry.

Tuesday night Sister K and I got into a big fight. Sure we fight from time to time but typically they are silly and one of us can snap the other out of it pretty quickly. We are fighting experts. I have to say I have been fighting with her longer than anyone else in the world. That’s the beauty of having a sister who is also your best friend. We fight we make up. The cycle continues. But Tuesday night I felt differently. I felt full of a different kind of anger and it wasn’t even directed at Sister K. I was just mad. And she was mad too. 

Then come Wednesday night I got into a fight with Husband on the phone. We still haven’t received our tax return we filed in March which is becoming a source of stress in our lives. With him being in school and me supporting us this is probably the one time in our entire lives where we really need the money. After a frustrating morning on the phone with the IRS they said there had been an error processing it, it was corrected April 15 and now it was being processed. We should be receiving it in 4-6 weeks which would have been last week. Husband is really mad about this as he should be. I just figure we can’t do anything about it. Literally we can’t do anything. There is no one you complain to about the IRS and it is pointless anger. We are just going to have to live until we get it. But the point is, we got into a huge fight.

Then yesterday at work I received a note from someone asking about Mom that rubbed me the wrong way. Implying Mom wasn’t telling her the truth. I was so mad. Then I got mad about some of the people we have in our lives who are nowhere to be seen. Then last night I got mad at Husband again on the phone. He told me I can’t expect that much out of people when they probably aren’t even sure what they should do themselves. This made me mad. As you can see, I am angry. But I think I am misdirecting all of my anger. It’s all coming out at all the wrong people and issues. 

Why am I angry? Or who am I angry at? I don’t know. I am mad at MS. I am mad that Mom went into the hospital for a week, is in rehab now but I am not sure she is having any major improvements. I am mad because I am not sure whose fault that is- MS or Mom? I am mad that this is all consuming in our family. I am mad because other families don’t have these issues with their Mom. I am mad that Mom had to be the one to get this. I am mad because I don’t think Mom is strong enough mentally and enough of a fighter to handle this. I am mad because my family needs a break. I am mad because there is no cure. There is no end in sight to this. I am mad because I am trying to take things one day at a time and my mind won’t let me. I am mad that all of this is so hard on Dad. I am mad that Dad is having to go through all of this. I am mad at the unknown of all of this. I am mad that Mom really may not improve very much while she is at rehab. I am mad because I am trying so hard to be optimistic about Mom’s health and struggling badly right now. I am mad because the reality of home health care is a little scarier than just the idea of it. I am mad because I am scared Mom is changing. I am mad because I see my relationship with Mom changing. I am mad because I feel like MS is slowly taking away who she is, especially the part of her that makes her Mom. I am mad because I want it to all go away. 

I want it to all go away. And it won’t. It’s never going away. Things are never going back to the way they were. My acceptance of this will come. I know it will. But right now I am angry.

To put it bluntly, this sucks.

Exhausted.

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I am exhausted.

Physically exhausted. Emotionally exhausted. Every level of exhaustion you could be I feel it. The past 4 days since I last posted have been a rollercoaster. Highs and lows. Good and bad. I have lots of thoughts. Thoughts that are going to be evolving everyday. It’s been a lot. A lot to experience without a lot of sleep.

It was a strange Memorial Day weekend. It did not involve boats but involved wheelchairs. It did not involve fun drinks but involved hospital food. It involved staying up all night but not by choice. It was not relaxing but stressful.

My family moved Mom to a rehabilitation facility on Friday. I stayed with her every night at this facility. Dad and Grandpa came to visit often. We were not very happy with the place but also did not think much of it. Monday morning I realized enough was enough at this place. I told Dad we couldn’t leave her there because the care was so poor quality. I was worried that when I left I wasn’t sure how everything would work when she was by herself.  No one was friendly. Everything seemed disorganized. The food was awful. No one was helfpul. The decor was depressing. The walls were brown and green. The furniture was old. I kept waiting until Monday. Hoping that this was just the result of a holiday weekend staff. On Monday it would get better. Well Monday came and nothing improved. In fact it got worse. I told Dad that she needed to be moved. This began a stressful day of phone calls, Dad touring other facilities, waiting for insurance approval, finding out if if the other place could accept her.  By Monday afternoon at 4pm she was being moved to a different facility. Last night at 9:30pm she was finally settled in and I finally began my hour and a half drive back here. 

I was exhausted but felt good. I felt much better saying good bye to her than if I had at the other place.  Dad stayed with her last night and will again tonight. Sister K will head down and stay the rest of the week. Mom has come a long way since just a week ago. She is up and moving around. Not perfectly but is able to walk on her walker. Due to the amount of steroids she was on and possibly other factors her legs and ankles are very swollen. She keeps saying she feels like a marshmallow man. That has been the next hurdle to cross. This limits what she can do in therapy. I have learned what compression socks and water pills are now. I am hoping they will miraculously begin to go down. They just have to. We can’t take anymore setbacks. I can’t mentally handle them. So I am staying hopeful. The swelling will go down. She will get a lot out of phsyical therapy. And she will leave there more mobile than she was before this began.

I have many more thoughts. They are swirling around. But my exhaustion is preventing me from keeping them straight. I do know I learned a lot this weekend. I have mastered how to operate a hospital bed. I have learned how to navigate a hospital with nurses. I have learned all about pain medicine. I have also learned how to function on little sleep- sometimes I was successful and sometimes I was a disaster. Most importantly though I have learned how to find the positive in the little, sweet moments with Mom. How much a kiss on the cheek, an “I love you” or a smile will perk someone up as they lay in a hospital bed scared. I learned that as family you are each other’s greatest advocate. I also felt a shift in my role in our Mother/Daughter relationship. I took care of Mom the past 6 days. I stayed with her so she wasn’t scared. I fought for her. In a way these are things she has been doing for me my entire life. It was my turn to do them for her. I was exhausted but still found energy. It was love that kept me going. The love I have for Mom and the love I know she has for me. I learned there is nothing more powerful.

It’s Happening.

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Sister K is 25. She is an adult. She is not so little anymore. But to me, the big sister, she is still my little sister. But for the past day she has been Mom’s warrior at the hospital. I have had to come back to work, Dad had to go to DC for one night last night so Sister K has been holding down the hospital room with Mom. Managing what doctor’s are saying, making sure things are getting done, and being a bit out of her comfort zone at times. Last night though she stepped over the comfort zone line and the hospital better watch out because I don’t think she is going back. 

At about 1:30 am I woke up to the sound of a few text messages. Dad didn’t answer his cell phone so Sister K was seeking my advice.  

Sister K: In case you’re awake, have a question- Mom’s about to do MRI and we were just told it may take 3 hrs. She said I don’t need to go down and go in with her but I feel bad.

Dad usually goes in and sits with Mom, holding her hand during her MRIs. After a few quick minutes of texting about this she called me. She was irritated. A nurse had just come in to tell her that they may delay Mom’s MRI. The doctor had told Mom at 5pm he wanted her to have the MRI done and now at 1:30am it was finally her turn and they were wanting to delay it more. Ridiculous. I sat on the phone with her encouraging her. Telling her she could handle this. Be firm but they need to know Mom needs this MRI.  The rude nurse told her things like “the hospital is short staffed to get your Mom down there, why wasn’t this already done, etc.”  All good questions/issues except as Dad likes to say at times “that’s not my problem, fix it.”  I sat there on the phone as I heard the nurse in there. I couldn’t make out what she was saying but it was a rude, know it all voice. There was a scuttle of commotion. She made another comment about the MRI and that’s when Sister K showed this nurse she wasn’t just some little sister hanging out with her Mom.  Sister K very politely, yet very firmly said: “Well, it’s happening. Mom has lesions on her brain that the doctor wants to look at to determine the course of treatment and what is going on. This was ordered at 5pm today. It’s happening”

And they backed down.  I sat there on the phone with her. Encouraging her as she spoke. Reassuring her.  You’re doing great. Don’t second guess. Stay strong.  You’re doing really well. I’m so proud of you. As the big sister I was holding her hand as best as I could through that phone.

They got Mom situated and wheeled her down. We hung up the phone. She then called me back once Mom was in the MRI and she was heading back to the hospital room. By this time it was about 2:30am. I told her I was so proud of her. Thanks to her Mom was getting the MRI. She had really advocated for Mom when she needed it most. We talked for a few minutes and then both went to sleep.

Or at least I thought I could sleep. I layed there in bed just thinking about everything going on right now. My mind was racing with thoughts. Scared thoughts. Sad thoughts. I also just felt sorry for Mom and everything she is going through. I don’t think I slept much. There are too many unknowns right now and too many of them are scary. I am trying to manage my mind and not let it “go there.” But hearing the commotion of the hospital room, being on the phone while all this was going on, it made it real again. As if all of this isn’t real enough. It felt more real. Living in the real is scary right now. Life, it’s happening.

The Teeter-Totter of Life

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A herniated disc.  We think we might finally know what is wrong with Mom.  I wish this potential diagnosis had come about easily but no. Nothing can ever be simple. Mom was up most of the night in pain again which means Dad was up most of the night. This morning they called a family friend of ours who is a doctor, who got them in to see a doctor he knows at a pain management clinic. He squeezed Mom in to see to him today and ordered an MRI for her to have done on Monday. But by feeling her back the Doctor said I think you have a herniated disc. 

Feelings of being thankful we may finally know what is wrong and anger rushed through me at once. What has the other doctor been doing all week ordering these ct scans and just putting her on pain medicine? What is going on?

This is where this gets tricky. My mom has MS. But how I take care of her is different than how I would take care of her if she was say 88 with this disease. I am not the one that is going to pick up the phone and call a doctor to demand some answers. My parents are still fully in control of Mom’s health.  Therefore Sister K and I play a tricky role.  We aren’t in charge of Mom’s care but we are old enough to understand what is going on and to demand better. But at the same time we can’t. We have to stand by and wait for these decisions to be made by Mom and Dad. Sometimes they make them together. Sometimes they wait for Mom to make the final decision. It’s tricky. It’s tough. It makes this world of having a Mom with MS tricky and tough.

Right now we stand by. We offer advice. We provide pressure when we think it needs to be there if we don’t agree with decisions. But beyond that, the actual decision isn’t either Sister K’s nor mine to make. We are still trying to find our role in this portion of handling Mom’s MS. Realizing our parents do need our help but there is also a level to that support we can provide due to the nature of our responsibility in our family’s lives. Our parents are still at an age and state of health where these decisions are theirs to make. But we want to be involved. It reminds me of a teeter-totter. Sister K and I go back and forth. We have discussions together in one regard. Then we have to yield to our parents and their decisions and what they believe is the sense of urgency in another regard. We’re still trying to balance it and we haven’t come close to mastering it. New things come up. New health challenges. And new ways we feel we need to be involved in this. So we teeter-totter some more. 

One way I know I can help is deciding to go home this weekend to help Mom and Dad out again. Sister K is coming down Sunday and will stay in town until Wednesday. Tomorrow I will take my Grandpa (Mom’s Dad) to a family reunion my parents were supposed to take him to but for obvious reasons can’t go. How hard of a time will I give Sister K because I am the chosen volunteer to attend the family reunion?  Let’s just say she will be “on call” over text messages all day Saturday while I eat my $10/person bbq plate and hang out with Grandpa…. 

Do you ever feel like you walk a fine line when dealing with your parents’ health? Have you ever been really mad at a doctor because you could’ve diagnosed a symptom yourself sans medical degree? Do you like bbq?

~Thank you for reading this week and for coming back and continuing to read. It means more to me than you know. Hope you a wonderful weekend of laughter (and maybe some bbq in honor of me if that is an option where you live)!

30 Minutes of Bliss

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Three way Calling.  It has been around forever. In a world of new inventive ways of communicating over the past 10 years I can say that three way calling was here long before texting and instant messaging. I remember using it in high school and am laughing because 10 years later here I am using it again for different reasons. 

Recently Sister K and I have been spending more time 3 way calling with our family in the evenings. I am obsessed with these 3 way calls. They are hilarious and fun and make me dizzy with laughter the entire time I am on the phone. There is something about them that is thrilling. An adrenaline rush of a phone call.  To know we are all on the phone together. At the same time. But not in the same place. We fill an entire 30 minutes with nonstop talking about nothing at all.  There is laughter, there are interruptions as we talk over one another, there is even Dad randomly popping in when Mom hands him the phone to make us laugh.

Just a few more minutes turns into more and more minutes. These converations are never short and quiet, they are long and loud. Husband actually left the room to go close himself in the bedroom because he couldn’t take much more last night. But these 30 minutes. These 30 minutes leave me absorbed into a happiness high, full of love as I hit the pillow at night.

I may no longer be able to run around the mall with Mom like I used to or go places as easily but we can still talk and we can still laugh.  I have noticed I have talked a lot about laughing recently. I think I am realizing how much laughter is a large part of the foundation of my family. Our inside jokes, our silly moments, these things are part of the roots that hold us together. The laughter has changed over the years. What was once full of Dad swinging his little girls high up in the air upside down is now filled with moments of talking about life in an upside down kind of way. And when our world feels like it is upside down most of the time it is harder to fight it than embrace it.  And how do we embrace it as gracefully as we can? We laugh.  

Have you ever just sat back and laughed at your life? Does your family have silly inside jokes that bond you together? When was the last time you three way called someone?      

A Different Kind of Mother’s Day

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It was a different kind of Mother’s Day.  It wasn’t flashy, it wasn’t full of fancy brunches or lots of gifts.  But it was full of love.  A lot of love for the greatest woman in my life. Mom.

As you know, Mom may have a stress fracture in her hip.  Sister K and I were originally planning to surprise Mom by driving home for the day on Mother’s Day.  But because of this new development, I decided to go home Saturday instead.  I thought Dad could use the extra help and Mom could use the perk in her spirits.  There are times when you feel truly needed once you arrive somewhere- this was one of those times. 

Needless to say Mother’s Day in my house was not full of the usual restaurant lunch/brunch of years past.  Mom didn’t even make it out of bed all day.  Sister K did arrive and Mom got her second “daughter surprise” of the weekend.  Sister K is staying home until today since I had to come back last night because of work.

To avoid any specifics out of respect to Mom I will keep things general.  Mom was in a lot of pain and was on some very strong pain medicines that began to make her sick.  Mom is also having a lot of trouble walking.  Going from her bed to the bathroom, to the kitchen, anywhere.  She has trouble getting into bed and once in needs to be adjusted.  To put it simply, there is a lot to be done.  A lot that can be overwhelming for one person.  

But, even through the toughest moments of the weekend we found moments of laughter.  Moments of smiles.  There was the moment I completely forgot to put the brakes on Mom’s wheelchair while she was trying to get out and Dad responded with “Hello Genius!” There were Mom’s funny one-liners making fun of the situations we were in, the things we were having to do.  There were the moments where I layed in bed rubbing her arm trying to soothe her and make the pain go away.  Moments when she was in pure pain and I started telling gossipy stories to try to distract her mind or I told her to pretend she was back in labor and doing lamaze. There was also the fact that while I sat in bed feeding Mom soup, Sister K was rummaging through the bathroom cabinets screaming about mosquito bites she had just gotten outside and how bad they were hurting. As if we weren’t in the middle of a million other things, Sister K knows how to clear the air while directing the attention elsewhere. And it always makes us laugh. 

Finally around 4pm yesterday we all sat down for a moment to eat.  This would’ve normally been the moment where we traditionally celebrated Mother’s Day but yesterday’s Mother’s Day was different.  We had picked up lunch food instead of going out to eat.  Dad, Sister K and I got out the tv trays and all ate our lunch sitting on a bench at the foot of the bed in our parents’ room.  Mom was laying in bed finally resting.  Hello, Dolly! was playing on the tv.  I had put the movie on earlier in the day as an uplifting and fun distraction. I have always loved this musical since I was little and I also know how much Mom loves Barbara Streisand.   

As I sat there watching the end, Sister K on my left, Dad on my right, dogs behind us on the bed and Mom laying down I had a thought.  This is it. This is what Mother’s Day at the heart of it is all about. A day of love and togetherness with family. This Mother’s Day celebration was a simple one but it was also a tough one.  It made me realize how strong my family is, how resilient we are.  It was a Mother’s Day where Mom watched the family she has been the anchor of all these years anchor her.  She watched us use everything she had taught us and put it into action.  She watched the strength she instilled in her daughters come to life.  Amidst the pain and the stress, there were those simple moments of laughter and simple moments of love. 

I don’t usually remember one Mother’s Day to the next, but I have a feeling I will always remember this one.  I will especially remember the way I felt sitting on that bench for the rest of my life.

Dear Wasps, Thank you.

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This past weekend Sister K, Husband and I drove home for the weekend.  It was “Celebration Station” as my sister called it at our house- a belated birthday for me with my family, Cinco de Mayo and the Kentucky Derby all rolled into one. 

Our Plan: Sister K and I began the afternoon pulling the cover off our patio table and chairs.  Mom had bought a new one and wanted us to change them out.  This was a very small task that took less than 5 minutes.  We were then going to wipe the table off and spend the day relaxing with the family outside by the pool with homemade margaritas.  For dinner we were planning to grill steaks and eat outside for the first time this year.  Sister K and I had told Mom we would take care of getting everything out there because we know that usually is a stresser on Mom to deal with moving things from the kitchen to outside.  Eating outside is relaxing and creates a positive mood for everyone that it is worth the extra effort. 

Reality: My family is learning to go with the flow becuase of MS.  I say my family, really I am learning more to go with the flow.  Plans change on a whim, things don’t work out and you have to roll with it.  Well our plans got turned upside down but this had nothing to do with MS.  It had to do with wasps. 

After taking off the table cover we were setting up the lawnchairs and I began to notice 2 bugs flying around.  They seemed to be almost circling the table.  I thought they were moths and didn’t pay much attention but then Sister K said, I think those are wasps.  We were confused and then thought to ourselves, is there a wasp nest on the table cover?  So what do two girls who are grown adults in their 20s do? Try to solve this for themselves? Absolutely not.  We yelled inside for Dad. 

He comes out and upon further inspection of the cover we realize there is in fact a tiny wasp nest attached to it.  There weren’t any wasps near it because we had already moved it away so Dad crushed it.  But, we still had the issue of what we thought were 2 wasps.  A typical family is probably prepared for these things and has RAID or some other powerful product laying around.  Not mine.  But determined to not ruin pool day Sister K begins googling and realizes furniture cleaner will kill them as well as most household cleaners.  So we get a bottle of Windex.  We then proceed to corral our dogs and watch as Dad kills these 2 wasps.  Success.  We are in the clear.  Let’s resume pool day. 

No sooner have we layed one towel on a lawnchair does another one appear.  Once again, what do we do? Yell inside for Dad.  He reappears, Windex in hand.  We kill another one.  We go back to lay out our towels.  Another one appears.  We call for Dad again.  This time he and Papa (our Grandpa was also over for Celebration Day) both come out.  Sister K turns on the camera of her iPhone just as it disappears.  So instead of just going back inside, I begin interviewing Dad about this experience and “mid-interview” a wasp appears.  He goes after it.  I am sitting here starting to laugh just remembering the sight of Dad strategically moving with a Windex bottle.  All of this while Papa just sits silently with a little smile. A chuckle.  A chuckle I think he has because he knows we can do this all day. The wasps are going to keep coming back.  This was their home base.  There will constantly be another one.  Finally we declare pool day has been a bust.  We go inside to eat chips and queso, drink our margaritas and laugh. 

While all of this was going on Mom was asleep because she is on some strong medicine for the spasms in her legs that have been causing her painful leg cramps.  The medicine makes her very dizzy, tired and sort of “out of it” for lack of a better description.  She knew there was something going on with wasps because she couldn’t help but hear it from the bedroom but she was in and out of sleep during this. 

At our steak dinner (in the kitchen, not outside) we were describing the afternoon to Mom when we remembered we had the live video Sister K had taken.  It was the most special thing in the world watching her see it, reliving it and laughing hard with her over how funny it was: Picture a 28 year old girl with a sombrero on her head and blue mumu dress (that would be me) interviewing her Dad, then watching him with a can of windex trying to kill wasps and chasing them around, strategizing about where they are going.  It was a sight to see. 

The point though is we live day in and day out with Mom’s MS being in the background of our thoughts at different points everyday.  We are concerned she is struggling in so much pain.  We could focus on this.  Sometimes we do.  We actually had been discussing it Saturday morning.  But Saturday afternoon we chose to focus on laughter.  Today as I am reminded of my weekend, I am not sitting here sad because Mom didn’t feel well this weekend.  I am sitting here smiling and laughing because of wasps.  I am sitting here feeling a large amount of love for my family.  I may even have a little love for wasps, as twisted as that sounds. 

Lesson learned: Be silly.  Be funny.  Remember to laugh and laugh hard.  Take advantage of technology.  Record these funny moments when Mom may not be there to take part .  She can relive them later.  Today she is reliving this memory.  She feels just as much involved in it as she would’ve had she been standing out on the patio seeing it firsthand. 

At lunch today we had gotten off the phone and I was reading for a little bit before my lunch break was over.  Mom called back and said, “You are never going to believe what I just saw while I was sitting here at the kitchen table- a wasp just flew by on the patio.” And we both laughed.

Do you ever have days of celebration that end up in a series of funny calamities?  Are you good at going with the flow when plans change?  Does your family keep a spare bottle of RAID around?

We Need a Plan

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Sister K and I were talking at lunch today.  We don’t know what our role needs to be going forward to help out with Mom’s MS.  We also don’t know what is in Mom’s head regarding her MS.  We wonder if Mom is doing everything she can?  We wonder if our approach is correct? We wonder what phase Mom is at with this disease?  Has she experienced acceptance of it or something else? We are confused and unsure.  We don’t understand.  We also just feel like we are at a loss for what we are supposed to do.  At the same time, how much can we do?  The help and support Mom needs is on a daily basis.  It is not in our power to move back in at home and be there everyday to help out.  I also don’t think physically we can provide the assistance she needs. 

Once again we are beating our head against a wall about this.  And it’s frustrating.  It’s almost like we need a plan.  But what’s the plan?  A schedule of weekends we will go home and do what we can- clean, run errands, grocery shop, whatever we can do to help out.  Is that the most we can do?  What else can we do?  And then the questions begin again. 

Today I am confused. I am overwhelmed and confused.  I need guidance.  Mom is stubborn.  We all have qualities in us that would make dealing with issues difficult and this is hers.  It’s easy for people to say “tell your Mom to do this, tell her to do that” but they don’t know her.  Sister K does and that is why she is my main support in all of this.  We can support each other but together we can’t figure out how we are supposed to support Mom.  Once again I feel like I am 20 years too early for these discussions.  I feel like we don’t know enough or have the resources available to us for these decisions.  It’s hard.  It’s a big, overwhelming picture.  It’s a lot of things at once. 

The only thing I can wrap my head around right now is we need a plan.  A realistic plan given our limitations in life right now.  Even if all we can think of right now is to start small with a plan of weekends we will go home and run errands.  We have to start somewhere.  I don’t know where else to begin.  This is ironic because I love to plan.  I am a self-proclaimed planner.  But this kind of planning causes something inside of me to mentally shut down.  I am going to have to learn to fight that in order to be the person I need to be to fight Mom’s MS.     

When it comes to MS, how do you share responsibility?  Do you have any other ideas of what we should add to our plan?

Pretending to Care

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Mom and Dad are going to go meet some of Mom’s college friends at someone’s ranch this weekend.  Since Mom is an only child her college best friends are like sisters to her and she really enjoys these get-togethers.  They have all had kids together and now we have become friends as well since we are close in age.  It’s friendship at its finest.  Telling these women about Mom’s MS was probably the hardest of anyone else she had to tell.  She actually had Sister K and I send them an email explaining it because she couldn’t do it herself.  They had seen changes in her, they were worried and they had begun to ask questions.  She was afraid of what would happen when they knew and how they would react.  Instead they have rallied behind her.  They call and email to see how she is.  Whenever we are all around they always keep conversation normal and don’t treat Mom any differently.  They offer to come to our house and help even though they live in different cities.  They are a group of people who have not only said they care but they’ve showed it.  An interesting concept- saying you care and showing it. 

Personally I have had a lot of people tell me they care.  Tell me to let them know if I need anything.  But the problem is they don’t maintain a close enough relationship that makes me comfortable enough to call on them.  Through Mom’s diagnosis I have learned as well who my real friends are and who really cares.  It’s been a painful process, one that’s still not over. 

I get asked by Husband, what would you like people to do?  The answer, I don’t know.  I don’t know, but I know when they aren’t doing what they should do if they really cared.  I want people to really mean it when they say they care.  I want people to make Mom comfortable when she is around them.  I want people to actually take Mom to lunch instead of just saying “I’m going to call you, we’re going to go to lunch.”  I want people to keep in touch with my family better and not just want to know the details whenever we happen to run into them.  In those same moments, I want them to stop with the quick reminders that they are there and they care.  I also want them to stop offering the unsolicited advice of the 100 things Dad, Sister K and I should be doing or making Mom do.  We are doing the best we can and if you really knew us, you’d know that.  

I have learned it really is true what they say- Actions Speak Louder Than Words.