The things I miss. The things I don't.

I miss looking up when I walk. 
I miss holding the beautiful children in my life.
I miss running.
I miss dancing.
I miss being spontaneous.
I miss playing.
I miss competing in sports.
I miss walking up stairs.
I miss being able to exit a room with defiance.
I miss wearing whatever I want.
I miss my pretty shoes.
I miss dreaming about being a mother.


I don't miss taking life for granted.
I don't miss putting things off for tomorrow.
I don't miss believing I am worthless.
I don't miss believing I am weak and feeble.
I don't miss lying about the sum of who I am.
I don't miss seeing the glass half empty.
I don't miss worrying about the small things. 
I don't miss living in a small world with defined possibilities.

The "Whys"

You've read my posts about my nephew and my new niece, they joys of my life.

The first three years of my nephew's life have been amazing for me. I wish my condition didn't progress while he ages, but it is. I am able to do less and less with him. With my niece, I am doing even less. But I have enjoyed everything I have been able to do with them, and continue to try and create unique experiences for them that remind them of fun times with their auntie.

My nephew seems to be getting smarter and more active at a much higher rate than his years would indicate. I think I have mentioned he can knock me over with one of his tackles. At three years old, he plays hockey, lacrosse, baseball, gymnastics and he skates and swims. He has boundless energy and an amazing spirit.

He also has a soft soul and knows when things aren't quite right. In the last year, as my leg and core muscles have weakened more and more, we can't rough-house the way he likes. I can't carry him and I can't sit on the floor and play with him. I would say, 'we have to be gentle because auntie's muscles are broken.' He tries to be careful, but I sure hate spoiling his fun.

Now that he is becoming more articulate and perceptive, he asks, 'Why? Why are your muscles broken?' Every adult knows kids are full of 'whys'. Why this, why that... how do I tell a three old why my muscles are broken and why I can't fix it? Why I need a cane. Or why I need a wheelchair. I guess it is everyone's instinct to want to protect a child from the cruel lessons of life.

But I am hoping if I can explain my story in a way he will understand, it might make him more compassionate and considerate of people who are different than he is. Hopefully, it will make him understand we all have special skills and when God may take one thing, he gives you something else and it's important for all of us to try to find that something else. Not just in other people, but in ourselves.

Success is in the Buckets

I have been thinking a lot about my last post and what I wrote about how foolish I thought it was that people think 'you can do anything you put your mind to". Sounds pretty negative and very un-zen-like, doesn't it? So I thought I would clarify.

I do think there are some things you can achieve with hard work, passion, commitment and determination. And there are some you can't. It's the absolution component that troubles me.

The reality is, life is made of three buckets where your successes live. Bucket One contains the things you have control over. Bucket Two is where you put things you have some control over. Bucket Three is for the things you have no control over.

This was a lesson taught to me by someone on our company's leadership team. It was a lesson on managing expectations and creating an environment where you can actually succeed. I think the theory is as relevant for life situations.

I wanted to be in advertising and I went after it and did it. I wanted to get my accreditation in PR and I worked hard and I did it. I had control over these things. I found a way to get the money, worked through the time commitment and worked hard to do well.

I also want to be able to run, to skate, to dance. But my FSH is in the way. Weakened muscles, a foot drop and I don't even know what to say about my ankles. But, right now, I have no control over those things and so I can't achieve what I would like. This is Bucket Three. (By the way, I hate Bucket Three, but it's part of the buckets and so there it is.) Now I have a choice. a) I can kill myself trying to make this go in Bucket One. b) I can redefine the goal based on what I can control and achieve a different success. Or, c) I can take comfort in releasing the pressure on myself for something I can't control and can't change.

I use the word comfort deliberately. It takes awhile to get there because it feels like defeatism at first. No one wants to accept they don't have complete control over their life and can't determine their own future. People who think that will find it very challenging to accept life's natural course of evolution. People get sick for no reason. People die unexpectedly. Things happen we can't understand. When you accept what bucket things are in, it is a liberating feeling and actually puts the control of your success back in your hands.

I leave you with this old quote, that is as true today as it was when I was a little girl reading it on my grandfather's wall:

"God, grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference."

Or the modern version:

"God, grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to hide the bodies of everyone I killed who pissed me off."

A Bit About Me

Since I haven't posted a profile, I thought I should share a bit about me. First, the FSH stuff -

I was officially diagnosed when I was 21. I still remember sitting in the doctor's office after showing him the 'neat trick' I could do which was touch my shoulders together in the front. Made for a great party trick!

But of course, I knew there was something odd about it. Something strange about not being able to lift my arms very high, the way my shoulder blades stuck out. Well, it was the first time I saw a doctor scratch his head and bury his head in his medical books to figure out what this thing was he had never seen.

He emerged with a possible diagnosis "Sprengel's Deformity". Not a bad first guess. He wrote it on his prescription pad with a question mark and instructed his nurse to call an associate who specialized in back-related issues.

I have to admit, at first it did seem like an adventure or an answer to a riddle. Such an oddity that you try to accept as normal, when you know something is not quite right.

The back specialist seemed to recognize it far more quickly and sent me to a neurologist for some tests. Never in my wildest dreams did I think he was going to say what he did when I walked into his office with my test results.

He sat at his desk, pulled out his file and said you have a rare type of muscular dystrophy called facioscapulohumeral muscular dystrophy. I could barely say it, let alone know what it even meant.

But at that moment, I felt a weird sense of relief to know that I had "something" that would explain my every failure in any athletic endeavour I made. To know me, you would know I am ambitious, driven and have a fierce sense of competitiveness and fight against failure. Here I was, failing at everything I tried and I tried everything.

It soon became clear to me, I shouldn't have breathed any sign of relief because there was no cure to this "something" with the impossible name. The next part of the conversation with the neurologist was a ghastly explanation of a surgical option called scapular fusion where the risks included punctured lungs, broken ribs and well, death if the surgery went wrong. Now let me quickly say, I did end up having the surgery and they did nick a piece of my lung during the first operation, but it was by far the best thing I ever did for myself. It gave me independence and as anyone with a disability knows, that's what counts.

To this day, it amazes me how little most doctors and specialists know about this condition. I had to take a patient brochure with me whenever I went to a health care specialist. No one seemed to know what this was. I have to admit, I was and still am on occasion, tired of explaining it. It's hard to explain this condition that even the most informed person on the subject will still answer with "I don't know". I don't know how fast or slow it will progress. I don't know how I got it (no one in my family shows signs of it). I don't know if it will affect any kids I have. I don't know when the condition peaks and plateaus. I don't know what the worst looks like.

On the other side, I am a 40 year old female living in Canada. I have a full time job and have a great family, wonderful friends and a life I sometimes take for granted.

Since the whole blog is more about my story, I will leave it here and tell you more in other posts.