Winter Camp Continues

   

     My brother, the tenth child, and his wife invited us for New Year’s dinner. They made a beautiful turkey dinner and the “ Cake Boss”, made two cakes. In a previous blog, I had mentioned how our mother would buy new PJ’s for us each Christmas. Well, my brother got me a pair from La Vie en Rose to help keep me warm. It was nice spending the evening with them, a good way to start 2012.

     It was time to set up base camp now that the wedding was over. I went to the fourth older sister’s to do this. There the bedroom and guest bathroom and everything I need were on the same floor. I would only have to go upstairs once a day to get a shower. The MSA makes it hard for me to get up the stairs, they can be very challenging for me. I notice my balance is getting worse and being tired does not help.

     The baby of the girls was going away in a few days and I wanted to spend some time with her before this.  We went to her house to play crib. She has two boys; it was her little guy who spoke during the wedding. The next day, we spent more family time together and went back to the baby sister’s to play some board games. 

     The next person on the list has her own campground, Lakeview Treasure. It was so peaceful out there. It was like a postcard because it had snowed and there were no tracks in the snow as far as the eye could see. We took a tour of the grounds and my sister showed me all the work they had done. After the tour, we then went and sat by the woodstove and chatted. While I was visiting, this sister gave me a fur coat, because I am always cold. That would not be the case any longer.  That night I received something special, a lobster. It was pretty big but I ate the whole thing by myself. I took a photo and mailed it to my husband. He was having eggs and toast and he took a photo and mailed in back. We had a good laugh over this. This sister also gave me a coffee table book all about Fleetwood Mac, who we went to see in concert a couple of years ago. She has one son; he rolled his truck while I was there. He was not hurt thank goodness, just gave himself and us a good a good scare.  I was spoiled for a few days while there with lots of comfort food and waited on hand and foot. We took a drive to the spot where we swam a lot as kids. We had 10 acres on the Atlantic in Cape Breton, a beautiful spot, which had become so eroded over the years.

     We all decided to go to Karaoke that night. First time for everything, and this was a first for me. There were at least 13 of us. What a blast we had. I watched as each sister besides me, got up to show her talent. I left there at 1:30, some of the other’s did not get home until 3:30. I guess we are going back next week and going to try and round up everyone. What a hoot we had, I suggested they have a few autographs but...

     Went back to base camp for a couple of days. My baby sister and her two kids came to visit. There is nothing better for the spirit than being around young kids. My older sister’s friend has a 4x4, it is like dune buggy, and the two little kids were going in this. While they were waiting, they made one of the nicest snowmen I had ever seen.

The kid’s had a blast and so did I.

     One of my nephews works at Boston Pizza, so we all went there to support him. I am sure they must have cried when they saw us coming. Another symptom of MSA is having trouble swallowing and choking. I already had a couple of incidents where I could not breath, and choked so, I have to be careful what I order. I do not want to scare anyone. I cannot cut my own food so that is always an issue all those things we just do, without thinking were becoming necessary to think of in order to do for me. Going to restaurants is becoming more challenging because I may choke on the food and getting to the bathroom is becoming difficult. But, I made it through this visit.

We are having a blast at Winter Camp and getting lots of family time which is so important. I have another busy week ahead. I continue getting the Royal Treatment! 

Ending The Year With A Wedding

      I arrived early in the afternoon so I had lots of time to visit family. The first sister I will be spending time with, I knew we would start crying. We just held each other and cried for all that is lost and is to be lost. We had a good cry and got it out of our systems. We would have three weeks!

    My sister’s husband was so good to me. He is the one who did all the meals, laundry and cleaning when I was there. Each morning, he made the toast and tea. I had a great visit with my nephews as well. We got to spend a lot of quality time together. Thanks for that!

      

     We have another wedding to get ready for, what a way to end the year and what a party. When this niece was small, I spent almost every weekend at their place. Every time her mother wanted her hair done, she would ask me to French Braid it. My niece had hair as thick as rope. She was like my little doll; I got to play dress-up with her.

      We were having a get together after rehearsal at the mother of the Bride’s. It was this niece’s Dad who had given me the handkerchief 26 years ago. My daughter used it in May; my other niece used it in August, now his daughter will have it on her wedding day, Full circle! My sister here in Ottawa also used a piece of her wedding dress to make the garter. In case it was not known it is now, that we have our own,"Cake Boss".  My sister-in-law made the beautiful cake.

      It was so good to see everyone again. Hard to believe a year has gone by already. One year ago I was coming to tell the family that I was diagnosed with MSA. Here we are one year later, me and Skye (my walker), and I know it will be my last trip anywhere by myself.

           

       Finally, the day had come! I was attempting to get ready, but I was having so much trouble getting my nylons on and getting dressed. Trying not to get cramps in my feet, or fall on the floor was challenging but I managed. I would not let MSA ruin this day for my niece. Everything was so pretty, and I wanted it to remain this way.

   
      The Bride & Groom looked gorgeous and so happy. The uncle of the bride walked her down the isle. Everyone was happy. To think so many loved ones to share this day with. The kids did such a great job at the church. You never know until that very moment how the kids will be. From the church we went to the hall. It was gorgeous, black and ivory are the theme this year for the bride’s. We sat and had dinner.

     

 

     The MC at one point asked if anyone had anything to say. My nephew who is only five said yes he did.  He got in front of mic and all those people and tried to explain that Sonic in his red shoes was faster than Mario, and how we were all wrong. I laughed so hard, as did everyone else.

     We finished dinner and had some time before the dance. When we came back for the dance, we picked a table that was behind a pillar on purpose. Because even though I wanted to be there, part of me wanted to hide. Which I managed, I did not want anyone to ask me about the MSA. This day and night were about the Bride & Groom!

Extra Photos 




You know what they say? "Out with the old and in with the new", --- the new me! Welcome 2012!

Deciding On Winter Camp

     It was the summer after being diagnosed with MSA, when I said to my husband if he needed a break from me, or the MSA that I could go to Cape Breton.  He was insulted that I suggested this but I was doing it out of goodness. So, when he admittedly told me no, that he did not need a break from me, I tried to make a joke of the situation, so I said “no summer camp”. He laughed and a joke was born. Everywhere we went after that, we would see signs to register for summer camp, and we would laugh. Here we are, six months later, and I have decided to go to Cape Breton for three weeks. Again, I try to keep it light so I keep referring to it as winter camp.

      So, Winter Camp started the 27^th of December 2011. I know in my heart this will be my last trip anywhere alone.  I know it is a long time to be gone and my Hunny is worried but it will work out, I have been telling him to get another hobby besides me, so he is going to start guitar. That makes me very happy. I knew it would be difficult, it would be the first time not celebrating the New Year in 26 years and I won't see my kids for three weeks but, knew this something I have to do, while I can.

     I had arranged for my nephew to pick me up at the airport and no one else. Because even though it would be a happy time, it would be sad as well. A whole year has gone by. I was be arriving with a walker and not on my own.  I send my family periodic updates but there is big difference from reading and seeing how MSA has affected me. Not only did I arrive with a walker, but, I fall over much easier now, I cannot roll over in bed, I cannot write or brush my teeth, I am having trouble speaking and my voice volume is low. I move very slow now, hard to believe the difference in such a short amount of time. I knew there would be tears if anyone else comes! I do not want to sound like a wounded animal…of course that is what I am! But I would have lots of mother’s to help me and take care of me once I got there.

This video won fan favourite at the Neuro Film Festival.

     It was not a long flight but I was very nervous. I was worried about where the bathroom was and if I had to go how I would get there? I did not want to fall on anyone. My other worry was if I had a non- breathing episode.  We changed flights in Halifax and there was a young mom and baby, sitting beside me. They were so sick, the mom actually started to get sick while holding the baby.  I could not offer to help and was hoping I did not catch what they have. That leg of the trip was the flight from hell.  If I sit for too long, I get cramped and these small seats with a sick mother were not helping. But, I got there all in one piece and still breathing!

      As you know I have a pretty big family and there are still eight on the Island, so I decided to stay with four of my sisters while there, “spread the wealth”.  I would stay with my nephew who picked me up at the airport first, until after the wedding. I would be spending lots of time with the others. The other's worked long hours, or no one was home during the day, or they lived too far out in the country, so this is the best way. That way no one person would feel burdened and get tired. It is going to be nice getting some one-on-one time with family!

But first, we have a Wedding to ring in the New Year! That is going to be a blast.

Christmas 2011

    

Merry Christmas!

    


     We got up at 8:30... things were so different this year. There was no one to wake us up this year, so we will have to change that tradition. Usually, our son wakes us, and then I go and put the lights on the tree and then the coffee, but things are different now.  I guess everything is new, even some new traditions!

  
   The kids are coming over in their PJ’s of course we are opening the gifts and then we will be having breakfast.  Our son-in-law had to work so we will have a celebration for him later. The kids arrived around 9:30. Let the fun begin!

      
      We had been looking for a print to put above the sofa with some color and we found the perfect picture at English Butler.  We wrapped it and hung it on the wall as a joke.  Turns out this is an actual spot in Toronto, it is a street with lots of cafes and a restaurant called the Kit Kat, hopefully we will be going to check it out this summer.

    We usually hide their major gifts with clues in the other gifts. This year we will have improvise. I had been collecting change for a couple of years, we were going to go to Scotland, but we will not be doing this now. It would be difficult with the MSA.  I wanted to be rid of the change so I counted it, and split it up evenly. I found two metal Christmas tins and put over $300 in each and placed it under the tree. Everyone just thought it was part of the decorations. We took the one can and told the kids who ever guessed the amount closet to the real amount got the can and could keep the money. Our son guessed the closest so we gave him the can, they were surprised that we were going to give him the can. Then, they were even more surprised to learn there was a second can, and of course our daughter guessed the closest to the real amount in this tin.

     Usually, I would be the one handing out the gifts but because of MSA and bending over tends to make me lose my balance more easily, I will not be doing this this year. I do not produce enough dopamine in the brain and so the signal from the brain is not a smooth transmission and sometimes things get lost in transmission.  My son wanted a Pea Coat, which we got him with a few other gifts, and my daughter wanted a Key to my Heart Pendant (which she will always have). My Hunny got me more charms for my Pandora bracelet, one was a Forget-me-Knot and the other Four Leaf Clover both very relative. I love this bracelet, the kids got me it last year and it is like a story to me. My children got something I have been wanting for a long time, a professional family photo with Love Bunny Photography. She took the pics for my daughter’s wedding so, we are familiar with her work.  When our son- in- law got off his 12-hour shif,t he had a celebration all to himself.

    
      Hunny got a head set and a leather jacket. The headset he had been wanting for some time and will come in handy, and the jacket just looks good on him.   

     

    
     We put the dinner in the oven and spent the day together just like old times. It was a perfect day. We have to cherish these moments and take it all in. It felt good to be around so much love and support.  

 Now time to get ready for Winter Camp!

Christmas Celebrations

     It is going to be a very busy month, show, Christmas, wedding and home to Cape Breton for three weeks. Hunny got us tickets to see Shen Yun at the NAC, an early Christmas gift. We have Orchestra seating. The colors were amazing and the show was good. But I did not realize the seating was in long rows, so we had to shuffle past others who were already seated. We did not realize it was a barrier-free establishment, the things you have to learn the hard way.  Another thing with MSA, is that it is hard to shuffle.

     


     My friend has been taking me to do a lot of my shopping and to get my hair dyed and outfit for the wedding. What would I do without friends like her? I am so thankful she is in my life. Especially now, I know I can depend on her and she only lives three kilometers away.

     

     Now that all the prep work was done it was time to celebrate. Usually, we have everyone over Christmas Eve.  I awoke early because I was so hot, so I went to change. This unusual because one of the symptoms of MSA is I do not sweat. This makes it easy to over heat. I got up to change and had a big fall, I bent the nails all the way back on me left hand trying to break my fall. Nothing broke though, just my left hip was bruised and my left arm swell just about had it. My Husband was at work so I did not have to tell anyone until after the event.  Another symptom of MSA, is loss of balance.

      

     Since my sisters and their families were here, that would make 21 of us. My sister from Toronto decided to surprise us and came as well. We had a huge family here in Ottawa now. We played a game where you have to bring a wrapped gift, which usually has a certain dollar value we all agree to. You place the wrapped gift under the tree and then when everyone has placed his or her gift under the tree you pick a number. The number you choose determines the order you pick a gift. Now, the person who picks 1 can pick a gift, the person who gets 2 can take 1's gift or choose a gift under the tree and then 1 has to pick another and so on until all the gifts are gone it can be a lot of fun if someone has enough guts to steal. After the gifts, we eat and have some laughs.  Everyone was great,the family prepared lots of food. One of my sisters and her huband arrived with lots of homemade squares, so we would not have to worry about that, My other sister brought a homemade Santa to add to the decorations. Then everyone goes home and gets ready for Santa.

   Another tradition I got from my mother is that we all received flannel PJ’s Christmas Eve. My mother always laid them in a row on the back of the couch. So we always get PJ’s at Christmas for the family. Well, about seven years ago with work, and everything else I ran out of time to get myself PJ’s but bought just for the kids and dad. So, that Christmas Eve I put them on the couch (a bit earlier than usual) and my kids said, "where are yours?" I told them I had lots so I will just grab a pair I already have. Then I went out to prepare for the evening, the kids said they were going out and would be back. Just before the guests arrived the kids called me in the room to look at something, here they had gone to mall to get me some PJ’s and they laid them on the back of the couch with theirs. This I will always remember, their thoughtfulness. So, each year now, I get the three PJ’s and the children get me a pair.  So, this year when everyone left, we did the clean up and I opened my PJ's they are teal and have Merry Christmoose on them. The kids and my Hunny took their PJ’s off the back of the couch and will be back early in the morning with them on for breakfast and gifts. Merry Christmas!