Friday, 31 January 2014

He joined the skipping club.

To be healthy.

To get exercise for his body.

Both great.

And so that he doesn't get MS.

Oh no...

He is not the kind of kid who skips; or the kind who joins the miss-out-on-playground-time to skip in a gym full of girls.

The wheels are turning again.  He thinks a lot about MS, and about health in general.  It goes silent for a few months, then goes into full force.  He worries about what is going to happen to me, and he worries that he'll get MS.  Neither of those have definitive answers, so I reassure him as best I can.  I show him the books I have that describe MS, and explain that it's not something he needs to worry about or can be "caused" by anything he might do.  And that, with treatment, is a disease I can manage.

He's also been asking questions to adults other than me.  How do people get MS?  What causes it?

And he knows my nightly injection routine right down to ice-pack time.

I worry about him.  Is this normal?  How will this affect him now?  And growing up?

Most of the time he's the most typical 6 year old boy I know.  He loves Lego, being silly and running around like a lunatic.  But other times, he's got the weight of the world on his shoulders.

It's hard.  Most of the time I have no clue what to do. 

There are always going to be reasons to worry about your kids.  For anyone, anywhere.

Childhood anxiety is new to me.  Especially now that I can see it rolling into other areas of his life.

Thoughts or experiences?

Thursday, 23 January 2014

Let's get this party started...

Well, it's a walk, not a party.  But now that I have your attention...

It's normal for the momentum surrounding someone's personal cause to fizzle out over time.  Things become habitual, life carries on, people move it to the back of their minds.

And there are other causes people would rather support.  I completely get that.

When I started my blog and my fundraising group last year, I knew this would be the case.  Honestly, though, I did not expect such a huge difference.  It's slower this time.  With not as much excitement.

This year, I wonder.  People seem more reluctant to join the team or to donate.  Is this because it's not a new thing for me?  MS is not the monopolizer of all my thoughts?

So, I am writing to share with you my passion for this cause. 

This journey is one I'll never be able to leave.  One that changes, alters, gets better, gets worse.  I fight it every day - sometimes silently. 

Some days just thinking about it consumes me.  I worry about my odds - will I be able to walk next year?  In 5 years?  10 years?  Will I lose my sight again?  What will this do to my children's lives?

Other days, weeks even - it hardly gets a second.  Just a fleeting glance as I inject my medication.

And the support, in whatever form, I get from anyone, at any time of the year, is appreciated and cherished.

But the rallying together for one big event really drives this home for me.  I can fight this battle.  And there is hope for my future. 

Being surrounded by people you love, supporting and cheering, is one of the best feelings in the world.

I hope this doesn't come off as a plea for your money.  It's not.  Because really - joining the team (for the locals) means much more!

And for those who have had to endure this ramble on more than one occasion - thank you for just smiling and nodding!

Tuesday, 14 January 2014

Knock on wood

Or, as my Nanny used to do, I'll knock on my noggin.

This is the longest stretch I've had without new symptoms and without the need for IV steroids since my diagnosis.

The usual stuff persists, but I am happy to live with it.

And life is much easier without that slightly-manic what if  that creeps in with new symptoms.

In fact - it's freeing.  The energy that usually is devoted to such worry is now being spent on reading more, playing with the boys more, and of course, just sitting - still.

It is also time to really get going with fundraising for the MS Walk.  If you haven't joined the team already, click here to join.

And if you'd like to donate to this very worthy cause, any amount is much appreciated.  You'd get a super cool button too: