When thank you doesn’t seem like enough...

When thank you doesn’t seem like enough...

We say thank you to the sales clerk when she hands us our purchase. We say thank you when someone holds the door for us. I say thank you in excess of twenty times a day. We are an extremely polite society, for the most part. What happens when thank you just isn’t enough? There are few words that express gratitude beyond a simple thank you.

I want to take this opportunity to express how thankful I am, to be a member of this family. Without them I would not be where I am today. Around this time each year, we gather with our extended family. I feel so lucky to have such a loving family. I watched the little cousins play with toys from my Grandma’s house. A whole new generation is enjoying toys that are older than me. A recipe for making memories that will last a lifetime!

Recently, I was interviewed by an author for a local paper called, ‘The Bay Observer’. I am feeling the love from family, friends & neighbours. I am so encouraged by the response to the article.

For me, being interviewed was a lot like therapy on fast forward. I started thinking that I could do the interview and keep my emotions from taking over. I soon learned that my emotions were part of the story. Once the interview was over, I felt a sense of relief. I had not talked about Friedreich’s Ataxia with many people before. I had talked about my disorder and nothing bad happened. This has been a cathartic experience for me.

Thank you doesn’t seem enough for what I have gained from this process. I thank you Ben, for being patient and kind with me. You are the perfect tour guide as I take the plunge into the world of writing.

I am not big on labels. I think sometimes people live up to or down to a label. I have no intention of living up to Friedreich’s Ataxia. You might google the name, but that isn’t me. I will not live with the word disabled hovering above my head. I am able in other ways. I refuse to let my disorder rule my life. Attitude is everything!

I am still not as open about my disorder as some other people may be and that is alright.

Christmas Memories...

Every year in December, I reflect back on Christmas’ past.

Every child has memories of a certain toy or gift that made you smile from ear to ear with excitement. There was the year of the Fisher Price kitchen set. I think every eight year old asked Santa for a kitchen set. It was as tall as me and likely weighed more than me. There was a pot of alphabet soup and a kettle that whistled. A toy that does not require batteries is tough to find these days.

When I was a teenager, I babysat for several families. I loved to babysit. To me it was fun to play and read with the kids.

On one Saturday in December, I was asked to babysit for a family with three kids. I loved this family and their kids, so I happily said yes. As it happened, this particular Saturday was during Chanukah. The family was Jewish, so before the parents left, they did the lighting of the menorah. I was not familiar with the words they said. What I remember most about that day, was that when they did the lighting ceremony, they invited me to participate. We held hands around the menorah and the recited a song in Hebrew. I felt so honoured to be included in such a meaningful event. I know that the family never thought twice about including me. I have never forgotten that day.

It did not matter that I was not Jewish or that they weren’t Christian. We were together and grateful for one another.

For Christmas this family gave me Hallmark ornaments of Mary and Joseph. I loved the ornaments when I received them and to this day they remain two of my favourite Christmas decorations.

When someone says ‘Happy Holidays’ to me, I am not offended in the least. It means that they wish me well.

My wish for you is happiness throughout the coming year!

Merry Christmas! Happy Chanukah! Happy Holidays to one & all!

Dreams

 

Dreams are the ideals one wants to achieve. I want to be the best that I can be now and always. Dreams change over time and not all dreams come true.

I want to be a good daughter, sister and friend. Doing so, will keep my current relationships strong and help me to forge new relationships.

In order to live my best life, I need to be healthy & strong. I have started physiotherapy to build up my muscles. Due to my neurological condition, it is important for me to maintain my core strength.

I want to be an author. Writing is my passion. Writing about my life, allows me to view my life with new eyes. By writing a blog, I am sharing my life with many people. It is important to me to keep my writing honest. Without honesty, my writing loses a connection with my readers.

I want what most people in my age group want. I want to make my dreams come true. Mainly it comes down to health & happiness. If I am healthy & happy, life is good.

I am not always happy. I try to be happy, but things don’t always work out the way I wanted them to. That’s the way life goes! It’s important to dust yourself off and move forward. Smile on!

If all my dreams came true, what would I dream about? There is always room for one more dream!

Perspective...

Life is all about how we perceive things.

A person’s clothing can be viewed in multiple ways. Today I am wearing denim capris and a short sleeved plaid shirt. To me, my outfit is comfortable and pleasing to my eyes. Some people look at my clothing and think of a farmer. When I think of a farmer’s attire, I think of denim and smooth fabrics that create a comfortable exterior.

When my almost two year old niece comes to visit my parents and me, she plays with the toys that stay at our house. Some days she will pull something out of the toy bin and on another visit, that same toy gets left on the floor. She almost always spends some time in my Dad’s office. There are plenty of books and other things to look at. She likes to sit in my Dad’s desk chair and gaze at all of the books.

A window is a picture frame, containing ever changing scenes from nature. When I visit my Grandma at her care center, we often sit by her window and enjoy the landscape that surrounds her building.

My Grandma has trouble maintaining conversation, due to her memory loss. The view from her window provides her with things to look at and talk about. It is interesting to listen to her perspective. Whether she talks about the Christmas Tree Farm across the street, I find it fascinating to see what aspect of the view, she chooses to focus on.

Art is a wonderful example of perspective. A painting can be seen in many different ways, depending on the lighting and the surrounding environment. A sculpture can be a hunk of clay to one person and a priceless piece of art, to another person

Photography can be seen through many lenses. The picture included, is of my parents looking out over the lake. I used my phone to take the photograph. I have an application that allows you to choose a lens to create different light within the photograph. I think this picture looks like my parents are standing in a field of tall grasses overlooking a lake up north. The light cast on the picture suggests the sun is setting.

My parents are standing on a pile of dirt in the empty lot next to our building. The golden grasses in the picture are made up of mostly weeds. This photograph showed me that there are indeed multiple ways of looking at things.

Another pair of eyes looking at the same thing often yields a different perspective.

What’s in a name?

When we were born, our parents gave us a name. Sometimes a baby is given an old family name, sometimes a baby is named after a family member or friend & sometimes the baby is not named after anyone. Typically, a baby grows into their name.

A child's name will often get shortened. My name got shortened to Meg. Family & close friends called me Meg. I liked my name then & now. In school, most of my teachers called me Megan, unless there was more than student who shared my name. You can’t really misspell Meg. Megan can be spelled so many different ways.

My older brother Andrew calls me, ‘Nerd’. I return the favour by also calling him, ‘Nerd’. It’s not meant to be mean. He was never called, Andy. When he got to high school his friends called him Drew. Ever since then he has gone by Drew. Our family still calls him Andrew from time to time.

My oldest brother Stuart was called Stuey as a baby. By the time I came along, he was Stu. He usually calls me Babe or Baby.

I usually call my mother, Mom or Ma. I always call my father, Dad. Now my parents are grandparents. Their oldest grandchild has named them. Even though we refer to them Grandma & Grandpa, Sophie has her own names. She calls my Dad, ‘Campy’. We think she means Grampy. Sophie loves her Campy. My Mom has been patiently waiting for Sophie to call her by name. The other day it finally happened. Sophie proudly said, ‘Bye bye Gamma’. It was a cool moment to witness.

Sophie calls Stu & I by our first names because our names are easy for her to say. We always refer to Stu’s wife as Auntie Michelle, but that is still too hard for Sophie to say.

A name is important. Naming a child is a big responsibility because it sticks with a person for life.

Why?

I have had this blog post partly done for at least a week.

The idea came from a book my Dad was reading. The book was about Warren Buffett, one of the wealthiest persons in the world. Warren describes the “Ovarian theory”. He believes he won the ovarian lottery. He means by being born into his family, was a lucky day. Warren could have been born in a third world country, to a family who did not have the means to support him in any way.

The following questions & answers are based on my interpretation of the “Ovarian theory”.

I hope the post was worth the long wait.

Why am I me and not someone else?

My life is definitely complicated by the neuromuscular disorder that I have, but I would not want to be someone else. It might also be that I am meant to stand as an example to future generations. Perhaps I have a disorder, so that future members of my family can be tested to see if they carrier the disorder. All of these answers are valid points.

I could just as easily been born as another person, free from my condition, but I wouldn’t want to be someone else. I’d be lying if I didn’t dream of one day walking down the aisle with my Dad at my side & the man of my dreams waiting patiently to marry me. I wouldn’t want to be anyone, but who I am.

Why was I born into such an amazing family?

I believe I was born into a loving, supportive family because together we are a strong unit. We protect each other.

My doctor says that the cure for my disorder will not be one specific drug, but rather many factors that come together to complete the puzzle.

I know he is right because without my family, I would not be where I am today, physically or mentally.

I was born into this family because they are emotionally strong enough to handle anything & everything.

My parents are so strong when I need them to be and I am strong when they need to be.

I come from a family with a clever sense of humour. We laugh every day. Sometimes I laugh when I am not suppose to.

My brothers have been known to make me laugh. I have always been the little sister who they protect at all costs. I was meant to be born after my brothers. There is enough of an age gap that we never fought.

My brother’s are both married. I now have the sisters I asked my parents for when I was younger. I am so blessed to have sisters in my life.

My cousin who is closest to my age is great. Our relationship has grown over the years. We are more like sisters than cousins. We will go months without seeing each other & yet when we do get together, we never miss a beat. I am so thankful to have her in my life.

Why do I have the friends I have?

I believe my friends are meant to be my friends. Without them, I would not be where I am today, emotionally and socially.

Friends share the good things in life. True friends are there for the hard times. A friendship is a relationship of give & take.

My best friend has been there for me, since the day we met back in grade nine. We’ve both had some hard times in our lives, and we support each other, no matter what. Yes, I use a wheelchair, but that doesn’t much matter to my best friend. I am appreciative of the fact that she sees me for who I am. All we need is a bag of ketchup chips & a cheese covered pizza and we are set for an evening of storytelling & gossip.

My friends are all special to me. All of my friends have cars or SUV’s that fit my wheelchair in the back. It is never a problem. They get me in the car & put the chair in the back. One of my competitive friends times herself & tries to beat her previous time.

I am with my friend for the long haul. We have many adventures together & we have many more to come. Usually our stories involve food!

Why was I born in Canada and not in a third world country?

Canada has an excellent medical system. Canada is home to a top neuromuscular doctor. This doctor has an excellent supporting medical team.

Why was I chosen to have a disorder?

I believe everything happens for a reason. Someone much greater than all of us, has a master plan for our lives. I believe in fate and destiny.

I don’t think it is an accident that I grew up less than an hour from the hospital where I would eventually go to for treatment of my disorder. There is no cure for my disorder, but the world renowned specialist in neuromuscular disorders, is at the head of my medical team.

Life is great!

I do not have all of the answers, nor do I pretend to.

I am happy just being me.

Past, Present & Future

My Mom has always encouraged me to look at the big picture. Where were you a year ago? What was happening in your life? After you’ve looked at your life one year ago, think back to what your life was like five years ago. Is your life better or worse than in the past?

One year ago...

·         I was finishing my psychology courses toward my degree.

·         I was studying for my last exam.

·         I was stressed because exams are not my strong suit.

Five years ago...

·         I was twenty-three and living in the house I grew up in.

·         I was struggling with the fact that my body was not performing as I thought it should.

·         I had started the process of getting a wheelchair. I was reluctant to use a wheelchair in public.

·         I started taking online courses toward my degree.

·         I became increasingly comfortable with having and using a wheelchair.

This past year...                             

·         I finished my final psychology courses toward my degree.

·         I graduated from university. It was a personal goal that lasted nearly a decade.

·         a huge amount of self inflicted stress was lifted from my shoulders.

·         I became a sister-in-law. She is amazing.

·         I became an Auntie to an adorable baby girl.

In the past five years...

·         I learned that it is okay to ask for help.

·         I realised that there was a lot of life to live in the outside world and in order to do the fun things that I wished to do, I needed to use my wheelchair.

·         I realised that nobody batted an eye at the fact that I was using a wheelchair.

·         my parents and I moved from the only home I had ever known. We now live in an apartment style condominium. I love it here. We all love it here. It is a new city, ripe with ever changing possibilities.

In one year I hope to...

·         have a healthier diet.

·         have a physical fitness routine.

·         explore vegetarian cuisine.

·         have a volunteer placement.

·         have a plan in order to get published.

·         explore dating possibilities.

·         cross a few items off of my Living List.

In five years I hope to...

·         have a volunteer or part-time career.

·         be a healthier person.

·         have at least one meatless meal a week.

·         be a published author.

·         be at peace with myself.