Dear Wasps, Thank you.

Posted on May 7, 2012 by AG

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?

Half Full

Posted on May 4, 2012 by AG

“It’s snowing still,” said Eeyore gloomily. “And freezing.” “However,” he said brightening up a little, “we haven’t had an earthquake lately.”

Optimism is tricky. It’s easy during easy times and hard during the hard times. Dad is someone though who radiates optimism and it shows. For the most part he is always optimistic. He is always uplifting to talk to and he always gives me the sense that no matter what’s wrong or how big the problem it’s going to be okay.

I think I tend to lean towards the pessimistic side. I tend to think why me instead of why not me. Mom getting MS hasn’t helped this very much. I have noticed even more of a tendency to focus on the negatives in life than the positives. The problem though is when I am drawn to the negative I like to stay there for awhile. My mind becomes cloudy. I can’t support others the way I would like and I especially have trouble supporting myself.

For instance Dad is trying to get a heater for our pool so Mom can use it year round. Hoping this will help her to exercise more and strengthen her muscles. After a month he was having trouble getting the city utility company to contact him about completing his request, something that would’ve frustrated me to no end. It would have made me bitter, helpless and I might have just given up. Instead he spoke with Mom’s doctor who put him in touch with the Director of the MS Society who called the city utility company who then had someone higher up personally call Dad to apologize. A lesson learned in optimism but also a lesson learned for people dealing with any disability: Keep fighting. If you aren’t being treated the way you should be call your local chapters. They are there to help you and your family members.

In relation to my Happiness Project, I have made a committment to try to find the positive in every negative. To be more specific though I am going to find 3 things each day to be optimistic about in my life. It’s a small step but I am working towards tricking my mind. Hoping if I do it enough my mind will naturally work towards the optimistic side than the pessimistic side of life. I will begin to deal with problems or situations that arise from a more half full perspective than half empty.

How do you stay optimistic? Any tricks you recommend? Do you find yourself more glass half full or half empty?

My 28th Year

Posted on May 2, 2012 by AG

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.

Today I Am Hopeful

Posted on April 27, 2012 by AG

Regardless of your political viewpoint, it was good to see the words MS on the cover of ABC News today. I believe increasing awareness of MS is what is going to increase fundraising support which will in turn increase research which will in turn find a cure. Every mention of MS in the media only helps build that awareness.

Its been a tough week filled with tough discussions about Mom, trying to get a handle on what is facing us and trying to do everything we can. I am trying to be more optimistic. To hold on to hope because in the end that is all we have. Deep down no matter how down I feel about what is going on around me with Mom there is always a spec of hope.

Today I am hopeful.

A Clear Head

Posted on April 26, 2012 by AG

At some point Dad, Sister K and Me have to realize Mom’s MS is her MS. It is our battle to fight but at the same time it is not. We can’t make her have a fighting spirit if she doesn’t want to have one. Regarding treatments, regarding medicines, regarding our plans….we are pushing and pushing and not having much success. The other day I had a thought- while this is our battle to fight it is ultimately Mom’s decisions what path it takes.

We will never be able to force her to do anything. Because of that we have to listen to her. We have to find out what her plan is and respect that even if it’s not what our plan would be. We are all exhausting so much energy coming up with ideas, discussing plans, alternative medicine ideas, doctors, etc that we are in a sense driving ourselves crazy. It is consuming us.

I have tried to blog everyday but I think that’s why yesterday I had to take a break. There may be other days when I have to take a break. Tuesday was a tough day and night with some tough conversations with Dad. I started to feel overwhelmed and overcome with stress from all of this. I also felt very frustrated with Mom. So yesterday I needed a break. I didn’t want to think about MS. When I talked to Mom on the phone at lunch, I didn’t bring up how she was feeling and we just talked. It was nice.

I think I learned a lesson, I can’t just sit and let my worries consume me, especially when its an issue that can’t be solved. I need to take a step back and come back to it later with a clear head and a better attitude.

Gotta Have Faith

Posted on April 24, 2012 by AG

I have to have faith in Dad. I think Sister K and I like to jump the gun, think we know best and take over. And we can’t. I had a nice talk with Dad last night on the phone which he said, I need you both to trust me that if and when the time comes that we need more help I fully intend to go get it. I am not going to wear myself out and I will know when that time comes. He also told me that unless Sister K and I intend to go back to school to get our nursing licenses we can’t help at the level that may be needed. That kind of made me laugh.

So Sister K and I are still working through things, we are still figuring them out but we are realizing we have to have faith in Dad. Faith that as Mom’s best friend he’ll know when, if it ever becomes necessary, to make the decision about getting extra help at home. He’ll know what he needs to do to take care of Mom and himself and we’ll be there to support him through it.

We Need a Plan

Posted on April 23, 2012 by AG

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

Posted on April 20, 2012 by AG

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.

Listening and Loquats

Posted on April 19, 2012 by AG

I take for granted my ability to just straighten things up or do things around the house. My ability to have a “to do list” that if I avoid procrastinating I can get everything done in a timely manner. It isn’t until I go home do I realize how much I take this for granted. As a woman your natural instinct is to make things presentable and as a Mom even more so. I think this is why Mom gets even more frustrated over the “chores” around the house that she can’t do. The past week she was upset because her loquat plants were overgrown and needed to be cut back. She had no way of getting to them because if she got out there with her walker she couldn’t balance to cut them.

So yesterday Sister K went home just for the night. She had to pick up some things and was there less than 24 hours. But Sister K didn’t just go home and sit around and relax. We both have realized there are certain items Mom mentions that she really needs help getting done. Certain items that are just going to make her feel better knowing they are accomplished. We also know that if we don’t step up to do these things it will all rest on Dad’s shoulders in addition to the other things he does.

So Sister K stepped up. She ran some errands to a craft store to get some supplies Mom needed, she painted Mom’s toe nails (this is their thing, everytime Sister K comes home…and it’s sweet) and she cut back the loquats in the back yard. Just knowing how much these specific items mean to Mom I know she is already feeling better about life today. Sister K didn’t leave empty handed either, Mom sent her home with some tuna salad she got up early to prepare. A way Mom can still be Mom, sending us home with food after our visits.

We are learning that we need to help around the house in ways we might have overlooked before or in ways we might not have needed to before because Mom did those things herself. We also need to listen to what Mom needs. We need to listen because we can’t do everything but we can do a few things that will lift up her spirits and make her feel accomplished. Feel accomplished in the same way I feel when I have crossed off the items off my “to do list.”

Just Mom

Posted on April 18, 2012 by AG

Sometimes I think it’s good to not always focus on MS. Mom’s MS is often a focus for us. It somehow sneaks its way into pretty much every conversation. It has a funny way of doing that- it’s a weasel. A sneaky one.

Today on the phone at lunch Mom and I just talked. She was in a good mood, she was focused and listening. We laughed and we just talked. I never asked about how she was feeling or how things were going today. This wasn’t on purpose but I just didn’t think about it because our conversation was so filled with other things to talk about.

This afternoon as I was thinking about our conversation I got a smile on my face. I was thinking of what a good conversation it was. It’s important that not every chat with Mom, not every sentence or thought has to do with MS. MS is important but it’s more important to focus on who Mom is without it. Not Mom with MS but just Mom. In my moments of frustration or sadness I forget this. These moments don’t come as often as they used to but today was a good day. Today I had the opportunity to allow my mind to be lost in just Mom through a phone call. And I am thankful for the moment.

MS recess

because life didn't give me a manual when it gave my mom ms