April, When it rains...

Oh where to begin?

I have found this blog thing quite cathartic.  I'm not sure that is the right word, or one that is used too frequently as it seems somewhat  "Hollywoodesque",

Being able to "ramble" on at times, poke fun and share our experiences has proven to be a welcomed outlet for me. It was an idea I originally scoffed at, when a friend suggested it, and here I am a year later "blogging" it out!

April has been a draining month...hence the title...when it rains...

Aside from the initial shock of the diagnosis, I would venture to say that April 2012, has been one of our toughest months, emotionally. It seems that every decision that came up, or had to be made this month, was linked, in someway shape or form, to ALS.

Now, I'm not going to start whining(alright maybe a bit). We all have a lot on our plate and very busy lives, and for the most part, we are taking things in stride and moving forward. But, hey, if you've been following along, you know what comes next... my blog, my space, so time to vent a little!

April has "showered" us with reno decisions, car lease decisions, nanny departure, kids, house care, street name change, just to start the list off!

April started with our new street name. We now live on Silver Pond Drive(formerly Ballantine Drive). No we didn't move but a new development is beginning across from us and the plan changed, and long story short, our street name had to change. Now, no one finds us!

Renos haven't started yet. We received our quote and that brings reality to not only the project getting underway, but also the final number on  the quote. The old "Buyer Remorse" starts to set in and you begin asking all those questions again...Should we? What if? Does that make sense? Well we've tried to push through that, again, and are now working on the "tough" decisions; paint colours, hardwood, fixtures, toilets, you know the critical stuff! Who knew there was so many different toilets to choose from!

Car is due to go back, lease is up. Easy decision right, get another! Yet wait...do we need another, how much longer will I be driving? Van is probably in the future, need to learn about vans and retro-fits?  Probably just get a Vespa for me to toot around town for now!

We are Nanny-less for the first time in three years. I know, I know, your heart bleeds for me! Now before you start getting all self righteous on me and telling me to suck it up, hear me out! The Nanny  over the past few months has really become the "Manny". As much as it pains me to admit, I need some support...whether its help to open things, meal prep, putting on a jacket, reaching items, our Manny has become my "helper, sous chef, support person" during the day. I, unfortunately, cannot look after my own daughter, fulltime, so for the time being we've had to arrange daycare as well. So days are much too quiet now without Sarah around. Now that I'm alone during the day, Susan wants me to "wear" my phone, aka belt clip,(an accessory for those that know me I have always shunned) and Dad has mentioned the "I've fallen" button, come on!
New Manny is on the way but in the short term we are sucking it up...doing laundry, cleaning, maybe not as well, but oh whoa is me, we will survive!

Then as we move into Spring, it's lawn and house care. First I will admit I'm lawn proud. It's not perfect but Susan and I have worked hard to get the garden and grass to where they are at today! Being on a corner lot I can say with my itty bitty chest stuck out that we get a number of compliments on our yard!
Now I have to relinquish that control to someone else! I'm getting better at not sweating the small stuff but the lawn has been a tough one to accept! The other is my garage. My neighbour still tells the story of this new guy moving in and how he was scrubbing, painting and making his garage all pretty before they moved in! Again, similiar to the lawn, I've had to accept others don't quite get that passion nor understand it!(except my Dad who as the "Project Manager" keeps me from tipping over the edge!)

And lastly...the kids.
I was sitting in the office recently, we had just put the kids to bed, and Susan was lying down with Ben in his room.
At one point, as Ben and Susan were chatting, I heard Ben say  "well Daddy's different, he can't do what other Daddy's do, he can't play as much, he can't ride with me, he can't go the park..."

In an instant, I lost my breath, couldn't breathe and felt sick to my stomach.
Susan, as always bless her heart, talked about the things that I still can do and talked to him about how he was feeling.

The damage was done. Nothing is more true than the spoken word of a child.

I don't care what the disease does to me, I've had forty plus years to live it out. But what breaks me is what this disease does and robs from Ben and Sarah.
Ben is very aware of ALS and Daddy's illness. We let him know when things change, what is going on and that he can always talk about things should he choose. Sarah, at this point, "knows" but we will be chatting with her before the walk on June 2nd to help her understand a little more. The tough part with Sarah is she will know no different than an ALS Daddy.
The silver lining...

We got a motorized scooter from the Sutherland's recently and Ben was really excited. When I asked Why? He said "Daddy you could ride around the block with me and go to the park!" I said, "Yes I can".

That was a moment I will treasure forever...

Till next time!

Never, never, never give up
Winston Churchill

ALS Walk, Saturday June 2nd