Disneyland Part 2 - The Reality

As I wrote in my previous post, my trip to Disneyland with my nephew was planned out well. The itinerary, the transportation, the company.. all good.


I had planned to spend the first day calibrating myself. Doing the walk around Disney and determining what, if anything, I would need to assist me. The other aunt decided that we should just rent the scooter provided at Disney. The truth was, everyone rented those scooters. Disney is huge! So what was the big deal?


I didn't think the experience would be as jarring for me as it was. I have always tried to prepare for mobility assistance as an inevitability to avoid such a moment. But I guess you just never know how you are going to react when actually in the moment. The scooter was easy enough to handle and thankfully my nephew loved riding around in it. But, I caught my reflection in the window and just couldn't believe it. What was I doing on this contraption? I shouldn't be using this, should I? The reality was, I would have struggled walking the whole park on my own. Even using the stroller to keep me balanced, it would have been tough. Why did I want to struggle if I didn't have to?


I thought it would give me freedom. But for the first little while, it made me feel trapped. Like I was trapped in a body and in a life that wasn't right. I thought I was over all that. But I guess it is a reminder that FSH comes in phases and with every phase, you have to go through another emotional and physical adjustment.


There were so many places I couldn't get into. So many things I had to imagine instead of experiencing. And the worst part of all, the new reality that not only was walking a problem, but I discovered a whole new set of limitations: no rides that were too low or too high, no standing in line because my nephew needed to be carried which I couldn't do, no swimming with him since he needed to be held, no giving him a bath or brushing his teeth because I couldn't kneel and the worst? No big bear hugs from my nephew while I was standing because I would fall over.... which I did. 


So was that it? Was that going to be my memory of The Big Dream?

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.

Duck, Duck, Duck, Goose!

Remember that game you played in pre-school? When one kid walked around a circle of kids, tapping each one on the head saying, "Duck, Duck, Duck," until one unlucky kid who got tapped with a "GOOSE!"

The new "Goose" had to chase the old "Goose" around the circle and try and tag them before they sat in the empty spot in the circle.

All the kids hoped beyond hope they wouldn't get stuck being the "Goose".

That game where the goose is chosen somewhat at random reminds me how someone with an illness feels and asks, "Why me?"

I know there are many spiritual reasons people use to explain life's randomness. I have heard:

"God only gives you what he knows you can handle."

"Suffering is God's way of bringing you closer to him."

"You must know the bad before you understand the good."

The list goes on. Those who believe in past lives would say any hurt or difficulty you face in this life is retribution for an error from a past life. Some say all aspects of life are pre-determined and fit in with God's bigger plan.

For someone with genetic disease, passed on through the generations, it's a question you ask often when you are affected and others in your family are not. Why me? What happened to make me get this faulty gene but miss it in my cousins or sibling.

For me, it's part of what makes it hard for my family to understand FSHD since I am the only one in the family who has it.

I have a brother. My big brother who I secretly adore and look up to. But on the outside, we are two stars of your favourite comedy show, making fun of each other whenever possible.

He is strong, successful, humble, a natural athlete and leader and is always the person in the room you want to know. And I was the geeky, pesky younger sister who couldn't do anything right.

Don't misunderstand, I have never once asked, "Why not him?" That would be unbearable for me. I suppose I was the right choice, if I can make some good come out of it. But it took a long time to get t this point where I accept it and simply try to make the best of it.

I just didn't understand what I had done wrong. I must have done something wrong in this life, in another life. I must have hurt someone or put them through equal pain to suffer with this disease. "Why me?" became "What did I do to deserve this?"

I'm not sure there is ever a good answer you can give to comfort someone who is suffering through an illness or difficult time.

For me, I believe there is a reason it was me and all reasons will be revealed in time. In the meantime, I try not to be too hard on myself.