A Different Kind of New Year’s

New Year’s Day is usually synonymous with optimism for the new year, resolutions, relaxing, organizing, and enjoying a well deserved day off. This was my plan heading into 2014 but I soon realized that was not how I was going to spend the first day of 2014.

Husband and I traveled home to be with my parents for New Year’s Eve because we had a wedding for a family friend to attend. We were running late as usual because it takes Mom a long time to get ready. It then takes a long time to get in the car. And as I watch Dad do this I fear every time he is going to hurt himself. We missed the ceremony but showed up in time for the reception. I watched Mom as she repeated herself several times about a group picture she wanted to take. Not repeating to make sure it got done but repeating to because she thought it was the first time she said it. I started to cringe a little bit. We then had to maneuver her around across cobblestone rocks that hurt her legs. We then had to find a good spot inside for her to sit. And the list went on and on. I sat there at the table just kind of tired and mentally out of it. Thinking these used to be fun and care free events for my family and now they just aren’t.

But we rang in the New Year at home with Mom and Dad. We had champagne and chips and queso. Husband and I opened belated Christmas gifts. It was a nice ending to the year.

New Year’s Day was frustrating though. It was frustrating because Husband and I had planned to get up and leave early. I quickly realized after waking up that wasn’t going to happen. It wasn’t going to happen because Mom had invited Papa over for a big spaghetti lunch. She kept saying Dad could take care of getting everything ready but there was no way Dad could take care of everything because he was busy taking care of Mom. A whole separate issue going on right now too. I realized I had to stay. I had to stay to get lunch fixed. Mom had envisioned this lunch in her head and even though I felt it was unrealistic, it was too late and I needed to execute it. So I did. Husband and I stayed around and didn’t leave to drive back to our home until around 4 getting home around 7pm.

I felt happy I could step in for my parents and help them out. I also felt frustrated I had to step in to help them out. I also just felt defeated. I feel defeated by MS right now. I feel angry it is in our lives. I feel helpless about what to do. I feel sad for Dad and everything he is going through as Mom’s caregiver. I feel clueless about where it is going. I feel hopeless and then I feel guilty for feeling hopeless. I feel selfish for saying I miss Mom and I miss the way things used to be. I am feeling a lot right now. I don’t understand what 2014 holds. I know where we were a year ago and I know where we are today. I don’t know where we will be tomorrow. I am trying to take one day at a time but it’s hard. It’s hard when you can’t see a light at the end of the tunnel. You just see another day in the tunnel. And I am worried that 2014 is going to be a year of tunnel-filled days.

Wishing you health and happiness in the New Year! Thanks for sticking with me through 2013! 

A Thanksgiving Lesson

Husband and I traveled to my family’s house for Thanksgiving this year. Sister K spent Thanksgiving with her boyfriend’s family and with Mom primarily bedridden right now, I wasn’t sure how the holiday was going to go. I am big on traditions- the tradition of seeing Mom in the kitchen cooking, everyone together eating, etc etc. Because of this I was honestly a little nervous about Thanksgiving. But I realized a big Thanksgiving lesson- I realized at the end of the day, the purpose of the holiday is family, not food…and it is being thankful for present moments, not past traditions.

What am I talking about?

Well this year we ordered turkey and stuffing. We also ordered pies instead of baking them. Sister K is a teacher and was able to go home on Tuesday to help Mom cook some sides in preparation for Thanksgiving. Then on Thursday I cooked a few more sides and pretty much played hostess to our small family consisting of Papa, Husband and Dad plus Mom and me. Mom wasn’t able to cook anything like she wanted but I did have her cell phone and while I was in the kitchen trying to figure out sweet potatoes I was calling her (only 2 rooms away) to figure out what to do. Going into the weekend I was quite nervous- I was going to have Husband there and combine trying to make sure he is having a good time with a new dynamic in my family, a dynamic that is constantly changing. I had already talked to him about it a lot and he was totally fine as I deep down knew he would be…he reassured me constantly going into it saying we will just go with it.

And go with it we did. I am still processing the fact that in putting away any plans or expectations and “just going with it” I had a wonderful weekend. I also had a very eye opening weekend. I realized that Thanksgiving isn’t about traditional food, cooking together or Mom being in the kitchen. Thanksgiving is about being thankful. I made myself focus on the little moments of being thankful and I am so glad I did- because it was in those little moments that I found Thanksgiving and found the things for which I am most thankful.

And my favorite moment from the weekend- it didn’t involve Thanksgiving Day at all…

It involved Mom, me and Hallmark channel movies. Saturday night Husband and Dad went to go see a “shoot ’em up guy movie” and Mom and I stayed home. We made Thanksgiving leftovers which we ate in Mom and Dad’s room and watched back to back Hallmark Christmas movies. There we were Mom in her hospital bed, me laying in Mom and Dad’s bed with my high school purple fuzzy slippers, Hallmark Christmas movies on the TV and a daughter whose eyes felt very opened to what family and holidays are all about- it was honestly one of those moments I wish I could have lived in forever.

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Hallmark Christmas movies with Mom

Did I learn a big lesson in what it means to be Thankful? Yes. Did I also learn a big lesson in the moments I am thankful for? Yes to that too. I am trying to focus on these little moments more and more…especially when I am home and especially considering Mom’s MS doesn’t seem to be getting any better. These moments are going to carry me to the next moment. These moments will get me through the tough moments. We are given these little moments to remember that this is it. This is life. It is in these moments that I find pure bliss. I am making an effort to focus on these moments more, moments that I know can’t physically last forever but moments that if I take a minute to appreciate will last forever in my mind. It is these moments that I am thankful for this Thanksgiving season.

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Bring it Aisle 17.

Also, just because I love all of you here is a picture of husband and me this Thanksgiving. After dropping off Papa on Thanksgiving evening, we headed to Target to see if there were any deals we could score and this photo-op happened. Another moment I am thankful for and want to remember forever.

What little moments did you have this Thanksgiving? Do you think sometimes there is too much emphasis on tradition and not enough emphasis on the present? I am thankful for each of you and wish each of you a wonderful holiday season. Thank you for reading and sharing while I try to navigate this new part of life. 

I Can’t Fix This. (and I am slowly becoming okay with that)

There are two sides to MS in my life- there is what Mom is going through and there is what Dad is going through. I see both sides. Or I should say I hear both sides. More specifically I heard both sides on the phone yesterday.

Mom is in pain. A lot of pain. She is also pretty much bedridden right now. It’s the first time I have said it that way but that is what it is- Mom is pretty much confined to her bed. Her physical therapist has recommended she possibly go back to the rehab facility she was in post-hospital in May 2012. She thinks it will do more for Mom than she can do with just a couple hour visits a couple times a week. Mom feels helpless. Mom feels bad for the burden she is placing on Dad. She feels sad that this is happening. And I get it.

Dad is overwhelmed. Rightfully so. He is going nonstop these days. He does have someone in our house both during the day and at night to help Mom. But on the weekends he is on his own. He’s also just mentally going nonstop. Running his company. Running our house. Also managing Papa’s life. It’s a lot. I have known this for awhile and unfortunately instead of getting better with the addition of help in our house it kind of seems to just be a small band-aid.

But for the first time I really didn’t get overwhelmed/depressed/stressed by this. I listened to Mom and talked to her. I listened to Dad and talked to him. Then I got off the phone and just sort of let it all just settle into the back of my mind. I am not avoiding the issues but I am also not focusing on them. I am beginning to believe we are reaching a cross roads with all of this. A cross roads which I am not sure what the result is going to be because for once I am finally admitting I not only don’t have control but I also can’t fix it. The two biggest things I struggle with I am slowly realizing to let go of them. Call it growth. Call it faith. Whatever it is, I need to trust it to guide my family and me through the challenges we continue to face.

Thanks to this place for listening. And thank you for being a place for me to share my struggles. I think I have experienced this little thing called growth thanks to this other little thing called my MSRecess.

Have you ever had a challenge or struggle that you finally just let go of? Have you ever experienced issues with trying to control or fix things in life and finally realized you just can’t? I’m not an expert yet but I hope I am slowly getting there. I’d love to hear your tips when you feel challenged by life.

10.25.13

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.

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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? 

Sit and Stare.

I have a problem with control. They say the first step in getting over a problem is admitting you have it. So there. I said it. POOF! Now I want to be over it.

When I say control, I don’t mean I have an obsession with a clean apartment. Far from it. I don’t mean I have an obsession with order. Nope not that either. But I do have an issue with control I am trying to figure out. I have also been doing a lot of soul searching and praying and trying to figure out if Mom’s MS is teaching me a lesson- because there is a part of all of this that I am struggling with more than Sister K and different from Dad. I think today I may have figured out one piece of the lesson. I don’t have any control over Mom’s MS, Mom doesn’t have any control over it and more importantly I don’t have any control over how it is impacting my life and my family’s life.

Today I may or may not have gotten really frustrated and mad at Mom when I called her at lunch. I got frustrated over something silly. Seriously silly. I’m going to tell you what it was about because we are all our own version of family here and I am going to be honest- it was about college football tickets. My parents have two season tickets to my alma mater’s college games and Papa has two tickets. They are all together. This Saturday there is a game and we aren’t able to go. Papa is selling the tickets to a man who did some work on his house. I don’t know why but this frustrated me and I got mad. Mad because Mom didn’t understand the details. Mad because I thought there were other people we actually knew who we could sell them to. Mad because we don’t know this person but we do know other people who would enjoy going. Mad because this is something in the past Mom would have orchestrated and figured out seamlessly. I don’t know, that was part of the list running in my head. Instead now my 87 year old Papa is figuring it out, not making what I think is the best decision. As I ordered my iced tea from McDonald’s drive-thru and drove back to my apartment to each lunch, it hit me. I have no control over the situation. Zero control. Nothing astronomically bad is going to happen. This didn’t even involve something that serious. Football tickets.

You could say I got home for lunch and was frustrated. I was irritated with myself. Irritated with my lunch break feeling ruined once again. Irritated with how I had once again failed and lost my cool with Mom.

I decided to take a 5 minute mental break and just sit. Sit and stare. Let me tell you where the best place to do that is- with our cat Chloe. Looking out the window. Staring at birds. Because that is what Chloe does. She sits and she stares. At birds, at moving tree branches, at the rain, at anything and nothing all at the same time.

So I sat and I stared. It was peaceful.

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Do you ever take time to clear your mind? To think about nothing? To just sit and stare at something? Have you ever lost your cool over something dumb? Do you have a problem with control? Do you think I have a problem with control or do you think I still have a lot of digging to uncover the lessons I am learning? Isn’t Chloe the cutest? Probably going to see a lot more of her on here. She brings me a lot of peaceful moments of pause these days. 

Moving Forward..Like It or Not

This whole “My Mom has MS thing” is not easy. I know nobody ever said it would be but it is seriously not easy. It’s not easy to think about. It’s not easy to talk about. It’s not easy.

I have hesitated to come here and write these thoughts down. I think I have mentioned this before but many times the act of writing down my thoughts about Mom’s MS makes it more real. It was one thing when her MS was secured in a tight neat little box that I felt we as a family had some control over. It is very different now that I feel we have no control over and sometimes I feel like we can’t even get a grip on it.

First Mom couldn’t walk. Now Mom can’t stand. Her handwriting seems to be slipping. I know this because I always loved her handwriting. She sent me a package in the mail and just getting the package out of my mailbox was emotional upon seeing the handwriting that had addressed it to me. I didn’t recognize it. Much like I am having trouble recognizing Mom.

It all goes back to writing things down. In this case receiving this package was a written statement to me that Mom is different. Our conversations on the phone…the lunchtime chats I have been having with her practically everyday on my lunch hour for the past five years are different. They are full of lots of the same conversations we have already had, simple thoughts, simple topics, nothing too complex and they are quick. They too make me sad.

None of this is easy and coming here to share it isn’t easy either. But I am because I think it’s important. This is part of my journey in dealing with Mom’s MS and unfortunately a lot of that involves the path Mom’s MS is taking compared to others. So I can’t promise I can talk openly about this everyday like I used to because part of my coping involves talking about it and the other part involves not talking about these changes and the evolution of our family with it. Sister K told me the other day on the phone: “I think we just have to accept Mom the way she is now and realize we are never going back.” It was profound and a simple thought but it was true. We are never going back- we are only going forward and that forward is into a place of unknown.

Thanks for reading as always. It means so much to have my space that is mine where I can come and share my thoughts.

My Head is Full of Nothing

People love drama. Not everyone, but some people really do. Just an observation I have made and one that is becoming a bigger one to Sister K and me recently. People complain of so much going on- X, Y and Z…and we just look at them. We empathize. We are sympathetic. We then share our own daily stresses…and we don’t get irritated in any way because the issues they describe are valid. Everyone has issues. It’s part of life.

But lately I am feeling a bit lost when I stop to think about how much is truly going on- I felt this way this past weekend while I was sitting at home at our kitchen table talking to Dad. He told me he just feels worn out. He has gotten help during the days for Mom but at night as soon as he gets home he said he literally has no time for himself. He goes all evening and all night long. He is a full-time caretaker. In some ways this would work if this was all he did but he also runs a major company during the day. He has the added stress of a full-time job on top of this. Then on top of that he is the head of our household. He is Dad- the one who is supposed to know everything and fix everything.

And now, in light of events from last week he now has the added weight of Papa’s hip replacement recovery. He is not responsible for the recovery and Papa really seems to be doing well- but Mom wants to get to the hospital to see Papa, therefore time now has to be allotted for that too. The process of getting Mom just out the door is a lengthy one, then getting her in/out of the car and back inside…it is not easy and it’s not quick. He told me that when he got the call in the middle of the night about Papa’s fall Mom was upset that he wasn’t more upset- and he said he just sat and stared thinking, how am I going to take on another thing right now?

He’s doing it though. Somehow he is doing it. But it worries me too. You can read between the lines and see why that would worry a daughter about her father. At the same time it frustrates me with Mom’s MS because quite honestly I don’t understand it. We have been told often by people the MS sort of ebbs and flows; you experience relapses; then recover; but Mom just seems to ebb. She doesn’t seem to go back to where she was before, she just gets worse– and I don’t understand why? Is that how this works? Is that how this is going to work for her? What is going on?

I have a lot of questions. Questions that are sitting right below the surface for me. Questions and concerns about all of this. I also feel helpless. I want to do more. I wish I could do more. I can listen but that’s all I feel like I can do- I can’t even think of advice to offer. Yesterday as I listened to Dad I just sat there with my head feeling blank…thinking how much more can you seriously take. I didn’t think this about myself- I thought this about Dad. And he doesn’t complain, he doesn’t get upset, he just takes it on- but I can see how it is wearing on him. I can see how he is tired. I can see how all of this is becoming too much…but then I am left with the question of how do you even fix that? How do you make it less? I don’t know how you do.

I feel like all I can do personally is not add to the stress. But beyond that I am at a loss. A head full of thoughts but no words and no way to fix anything.

Do you ever feel helpless that you can’t help a loved one more? How do you handle your MS with either yourself or as a caretaker? How do you stay positive and keep going? Does anyone even understand the path of MS?

Change of Plans

I know it’s been awhile. A lot has happened. For those of you who follow my blog and for those of you who pop in every once in awhile here is a simple but long update:

Canceled Plans:
Last summer I began talking about a cruise my family was going to take. We were going to go on Royal Caribbean Cruise Line, we had booked accessible rooms, I had booked scooter rentals, I had spoken with American Airlines about special needs issues on the plane, everything was rolling on normally…but I was nervous. I kept wondering if we were taking on too much. Taking on too much with this vacation- to put it simply, Mom has lost the ability to walk. As we got closer and closer to the cruise departure day, departure day being next Friday June 7, I kept having this small voice inside wondering if it was too much…I would then quiet the voice by rationalizing my way out of it…then the voice would re-emerge…and I would quiet it again. But in the midst of this I was praying. Praying that if we weren’t supposed to go on this cruise it would be revealed to us and without that we would just keep moving ahead.

Last Saturday that decision was made. Our Grandpa (Papa) fell in the middle of the night in his house, broke his hip and to have a partial hip replacement. His doctor said he could not go on the cruise. This then set off a sort of chain reaction where Mom did not want to go, Dad could not go if Mom was staying behind and then for Husband, Sister K and me to still go did not seem right. It seemed like a different vacation and it would be sad to go thinking of all of us not together. I also could not stop thinking, we are supposed to cancel. We are being told we need to cancel. It’s too much. Obviously too much for Papa but silently too much for Mom.

I am not in any way saying this happened on purpose, but I do believe it gave us an answer we had all been fighting out of our heads for awhile – We are not supposed to go on the cruise. Luckily our travel agent had convinced us to get travel insurance. I am in the process of gathering invoices, payments, etc but we will submit them and be able to get our money back.

But the lesson in all of this and Mom’s MS has been very clear to me- I can no longer plan ahead a year in advance. No longer assume Mom will remain the exact same. A year ago Mom had just gotten out of the hospital and was going into a rehab facility. Our goal at that point was to get her back to walking on her old 4 wheeled walker ‘Pinky’ from the standard walker she was using. A year later our goal is simply to get her walking.

Understanding While Not Understanding MS
Seeing that part of MS has been difficult to me- difficult because part of me believes she could try harder and walk because people tell us all the time of stories of this happening. The other part of me does not know if that is how this works and not walking is just another step. Regardless it is difficult to see the added stress this has added to Dad. It worries me in many ways. The amount of effort being exerted, the lack of sleep to help Mom up multiple times in the night, the nonstop nature of his days- not even ending when he sleeps. It’s difficult.

Process Overload
As you can see it’s been a lot. A lot I am processing and this is the first time I am writing it all out. The cruise cancellation is very fresh..less than a week to be exact. The reality of not going mixed with the reality of the unpredictable nature and path of MS is all slowly coming into place.

A Quick Life Update on Me

  • Husband graduated with his MBA, was offered a job and we are moving to a new city- still in the same state, about 3 hours from home instead of the 1.5 I enjoy now. Sister K will continue to live here so this will be adjustment for us.
  • I recently got a job offer in our new city and am going to be the new Public Relations Manager for a nonprofit organization. I start in three weeks and I am very excited! Knowing how difficult job searching is and having gone through the difficulties of it every other time I have searched for jobs before, I feel incredibly fortunate and blessed.
  • Also Husband and I adopted a 6 year old cat named Chloe. She will probably make an appearance on here at some point- we are pretty obsessed with her 🙂

I thank you for continuing to read as I sort through Mom’s MS.

Have you ever had any vacations canceled? Do you have any thoughts on the path of MS? How have you ever all of a sudden had a big reminder that life really is day to day, especially with MS? 

Is It Us or Is It MS?

Is there a way to walk your Mom with MS into a social gathering and not be the center of attention amongst friends? Or is this just something that is going to come with the territory now? It is something I am sitting here wondering today after a wedding this past weekend.

Halfway through, Mom needed to move from the table to her wheelchair to go to the restroom. So people gathered to help but really we didn’t need it. And the extra people just stared. Finally Dad said, why don’t ya’ll go dance or something and they quickly walked away.

Later Sister K took Mom into the restroom and after being gone for awhile I went in to help out. But people wondered where we were. Our absence created attention.

People wanted to ask Sister K, Dad and Me how Mom was- and that created attention. For the first time though, that part didn’t bother me. Maybe you could call it growth…but I didn’t get angry or irritated. I talked honestly to two of Mom’s close friends and one of their daughters. And they listened. They heard what I had to say- they admitted it is a lot for Sister K and I to be dealing with, they expressed they are worried, they wondered if there was more to be done, and I listened and I answered…I was honest.

But now today I can’t help but wonder if I shouldn’t have said anything at all. My family is a tight circle and a quiet bunch..and we are getting quieter as far as Mom’s MS is concerned. But at the same time, MS is not exactly a disease you can keep quiet- especially when people witness the changes in Mom with their own eyes and how those changes seem bigger every time they see her. So what do you do? What do you say? These friends of Mom’s are close to her and important to her, therefore it gets sticky. I don’t walk around telling anyone and everyone- and sometimes I don’t believe people’s intentions for wanting to know are good. But in this case I did.
So I struggle with how much do you say/how much do you reveal. Dad has said he doesn’t want Mom to be stuck at home forever…but if we are going to do things where we take Mom to events like this are we then also opening ourselves up for questions. Maybe we invite it upon ourselves. I am not sure exactly.

Does your family have any similar experiences with this or do you think it could just be a symptom of my family? Is it possible to hide what is really happening with a progressive version of MS or are people just going to ask questions? Do we possibly just need to understand this is what comes with the territory of taking Mom out considering the stage her MS is in currently?

The “Special Needs Family”

Mom has been having some issues this week with what the home health doctor thinks is her sciatic nerve. Dad had to practically commit an “act of God” to get someone from her doctor’s office to call him back with some pain medicine on Monday and Tuesday. I am learning that you literally have to take the motto “the squeaky wheel gets the grease” when it comes to dealing with neurologists. Maybe the ones where we live just are not that great or maybe it is the field of neurology- I’d be curious what your experiences have been? We are already on our second one and I don’t think there are very many others to choose from unfortunately. The doctor is good, it’s just the process involved if you have an issue outside of your appointment and the lack of communication follow through.

But I bring all of this up because this coming weekend Mom and Dad were supposed to come visit because we have a family wedding to attend. With Mom not doing so well, Dad has discussed with me several times the likely decision of not going to it. This is difficult because it involves Mom’s friends from college and one of their daughters. Going to the wedding is in many ways more for her than for us.

Aside from just the logistics of getting her here right now, I know Mom is not in the best shape and I don’t want her friends to see her like this right now. I was talking to Dad about how after awhile you just get tired of being seen as the “special needs family.” You get tired of the extra effort involved in getting Mom to these things, get tired of everyone treating us differently, the stares, people telling you how they think Mom is getting worse, wanting to get into your business about what you could be doing better….it goes on and on…

I know Mom has MS and I know this is just the card our family has been dealt. But that doesn’t mean I don’t get tired of dealing with the extra issues that come with the territory- the struggle to get easily in and out of places; the stares that come with this struggle; the comments that follow. It’s just frustrating, especially while I get to stand by and watch all of her other friends get around just fine. I have heard before it takes a special family to deal with everything we have going on and I know we are truly one of a kind to be able to handle it- but that doesn’t mean that I don’t get tired of it and wish it would all just go away. That’s how I am feeling lately as MS seems to be throwing more curve balls and I am struggling to keep up.

Do you think I am awful for admitting I get tired of being a “special needs family”? Do you ever struggle with how others treat you because of a disability either to you or to a loved one? Have you had issues with doctors being responsive outside of a scheduled appointment?