This blog interrupted by ... life.

So it's been a few weeks since I returned from the FSH Conference in Atlanta. I was bursting with a million blog posts and couldn't wait to tell you about them. From the research, to the fantastic people to the inspiring next steps I hope to take, I was ready for an epic series of posts.

But then a bit of life got in the way. The speed bumps in your journey that remind you the unexpected can happen at any time and don't you dare think you can see them coming.

Last week, as I was settling back into life post Atlanta, my boyfriend had a violent seizure which resulted in a 3 am trip to the ER. 

I have never seen a seizure like that. My aunt has epilepsy and I saw her have a seizure, but it consisted of her stopping in her tracks, blanking out and coming back to reality within a minute. 

My friend's son had one, but it involved him blanking out in her arms and waking up not knowing what happened.

This one was something else. It looked like his life was being dragged out of him and he was fighting for it with all his might. My only comfort is knowing he was unconscious and unaware of what happened when he woke up.

The tests at the hospital resulted in less than great news of a brain lesion, more tests and him having to quit his job immediately.

The news left my body ice cold and in shock. A much stronger impact than when I was diagnosed with FSH, actually. Funny how that is. I guess it's different when you hear someone you love is sick. I guess that must be what my family felt when I told them.

He told me he was supposed to look after me, not the other way around. We planned our future with the notion that my FSH would be the big challenge and was he up for taking care of me and whatever my future held. We never thought about what life could have in store beyond that.

But life always has a plan.

I'll post on the conference soon. In the meantime, go hug someone you love. One second, or one speed bump, can change everything.

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.

Splat!

I hope my posts about falling don't become too much of a recurring theme, but here is a stellar installment!


Last week, we had a big event at work. It included major stakeholders and executives from around the country.


I did my best to play my part and squeezed into the last suit in my closet that wouldn't cut of my circulation. I put on my ugly but sensible shoes figuring it would be better to choose function over fashion.


I spent the day walking back and forth from room to room, putting out fires and schmoozing at an epic level, something I don't do very well most of the time.


All the while, my feet were throbbing in my sensible shoes and my legs were getting heavier and heavier. By the time the event was over, I was trying to casually find a pillar to lean on looking classy rather than as rough as I was actually feeling.


Wouldn't you know it, just as I was crafting my creative exit at the wee hour of .. ahem.. 10 pm.. the president asked if I would take one of our senior executives upstairs to get her things. What a golden opportunity to connect with her one-on-one and make a lasting impression.


Be careful what you wish for.


I walked with her even though by now it felt like I was walking through sludge while my legs were being strangled by a medieval vice. My bones were rubbing against each other. My joints were aching and my back was as stiff as a board. All that from walking and standing in sensible shoes.


But, I kept going and tried to ignore the pain. I walked fast so I could keep up with this power broker in the company. I was holding my own in the conversation, engaging her in a strategic analysis of our latest initiative and then... you guessed it... I tripped on my own feet which I was dragging by now.


Splat, indeed.


I landed on my knee which left a massive bruise. She of course panicked and asked if I was ok. I was trying to think of something clever, but I figured getting off the floor would be a more useful endeavour. Since I couldn't get up off the floor, I crawled over to the nearest chair and pushed myself up all the while telling her to go gather her things and I would get her a cab.


I guess that left an unforgettable impression.


Thankfully she was too tired to dwell on it.


Thankfully I got out some intelligent information before dropping like a sack of potatoes.


Most of all, I am thankful I wore a suit and not a dress.

Disneyland Part 3 - The Opportunity

There are five stages of grief include denial, anger, bargaining, depression and acceptance. I am fortunate to be able to get through these stages quicker as time goes on. It's an important part living life to the fullest. 


I supposed I should be happy I passed through the stages well before the end of the trip. Having FSH does make one resilient.


I like to think there is a sixth stage which is opportunity. I want to believe something positive can come out of every experience. 


When I look back on the trip, I can only see my nephew's smiling face, his infectious belly laugh and his passion for life. He inspires me every day and reminds me happiness is a simple formula and I am so grateful for that.


The experience made me feel like I made the right decision not trying to raise a child on my own at this stage of my FSH. I am glad I spent the money on this trip because it is a memory I will cherish forever. I am glad he adapted to my circumstances and found ways for us to share our own special things that weren't as physical, I think it will make him a more compassionate person. I am glad to have one more adventure to look back on.


Maybe this experience was like 'dipping a toe in the water' to get a taste of what the next stage of immobility would be like. One thing is for sure, I am getting a sleek, red scooter. If I am going to get one, I better look good in it.

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?

Disneyland Part 1 - The Big Dream

I just returned from my dream trip to Disneyland. A dream trip because I had the chance to plan a wonderful week-long adventure with my nephew. 


I love that kid.


But I also wanted the trip to be really memorable for a number of other reasons. I needed to do this trip while I still could. I wanted to be able to be mobile and create a fun experience with him that I would never be able to share with my own child. I also wanted to do something memorable with the last of my adoption money since the adoption wouldn't be completed.


I suppose to some that would seem a frivolous way to spend the money, but I really needed to do this. I needed to have that memory and I needed him to have a memory of me that was "normal".


I planned the trip sparing no expense to ensure the trip was easy, given the limitations with FSH. I knew I would never be able to take him on my own as he has more energy than a flock of rabbits. So his other aunty came along. Thank god for her! She is a very kind person who loves him as much as I do, so I knew this would be a great experience for her too. 


I insisted on paying for everyone as I felt I had to have that independence and ensure I didn't feel like a burden. I guess that is something many people go through with a disability. It also gave me this great freedom and euphoria to be able to get him anything he wanted and do whatever we wanted to do.


We had a week of fun and we packed it! Disneyland, Knott's Berry Farm, Legoland, Seaworld, all the swimming he could handle, parks and movies every night.


I don't think I have ever laughed so hard. Kids are so amazing and this one has a sense of humour you would not believe.


I had lots of advice from friends with FSH and friends who had been to Disney. I myself had been to most of these places a few years ago. I didn't realize what a difference a few years could make.


Therein lies the second part of this post - The Reality. Reality comes and gets you every time. The question is, would it be enough to knock me off my game?

My Circle of Influence Just Got Bigger

Today was a good day.

We often don't take the time to celebrate all the good things that happen in our lives. It seems to be human condition to gravitate towards the negative, the drama, the conflict. But I think one way to create a positive life is to recognize the good moments and spread those moments around - let them infect other people.

I met a few people today who are either affected by FSH or have family affected. We've been trying to create a local support group to share stories, ask and answer questions and gain insight to the differences and similarities of this mysterious condition.

As always, I find similar stories to my own but packaged slightly different. There is comfort in knowing someone understands what you are feeling. It's a hard thing to articulate sometimes.

We had a great time chatting, not just as people who have this 'thing' in common, but just people who enjoyed each other's company. It's always good to surround yourself with the right people.

That's a good day.