Monday, October 10, 2011

iBecca


For some people, Monday's might be a drag.

I guess I never really understood that. Back when I was a Full-Time employee somewhere, I had a very unique situation. I loved my job. LOVED it. So Monday was never something that I felt jammed up over. I never felt like I was dragging myself out of bed to go to work.

This was once I finally GOT my career going, mind you, which was much later than most people. Early 30's. Prior to that, all the jobs I had never involved Monday through Friday, so Monday morning feelings never were a factor, but there were jobs I really didn't like going to, jobs where I used up all my sick time and then some.

These days? Mondays bring about a dual edge. Lemme explain.

The weekends are ALWAYS harder than the weekdays, because we have Bennett at home all day and all night, with a lot less 'help' in the HHA department, and it is a lot of work as much as it is a lot of joy. It's a symbiotic relationship if there ever was one, though. If HE has a good weekend, WE have a good weekend.

So when Monday rolls around, there is typically a feeling of relief when the house clears out and peace descends (if Bennett had a particularly rough weekend, which he did this past one), but on the other hand, I am home...eeking out a living, barely, doing the things I do, not really employed, my career in limbo, and so Monday brings that home and reminds me that I am 44 years old and since we cannot move and my career is so specialized the road ahead is about an uphill climb as far as how I need to navigate changing careers as you can imagine.

Where am I going with this? Not sure really. I'm just down today, and it's Monday...and that explains why for the most part.

Whenever I feel down, this is usually what I turn to...the act of writing, the act of turning to an online community at large, my friends in the SN community and beyond who I can vent to and try to purge the negative feelings in order to clear my head and try to gain some clarity of focus and maybe figure out some way to manage things in my life a little better.

I get a lot from this place, many in this group, folks I have met through my other blog and certainly have gained a great deal of things from this entire experience, many of which I want to talk about after the rest of the iPosts are wrapped up, which will be this week.

Hard to believe that we are so near to the end of our journey, the conclusion to our first Mission. Wild.


I never actually wrote an official iPost for Becca Kennedy, but I do want to mention something about Becca's iPad and Keri, her Mom. The fact of the matter is, as a group, we never collected any donations on behalf of Becca to donate her an iPad, and we never sent her one.

As I mentioned on her spot on the Recipient Page, she had the excellent fortune early on of being selected to receive an iPad by Gary James, as part of his '50 iPads for 50 States' campaign from his Apps for Children with Special Needs organization. She wrote about the experience in her blog here at Life with Becca.

Since that occurred after I had already revised our list down to 'The Twenty', and all the formats were set and the random order and all that, I just manually added the $550.00 to the donation total to account for the iPad as if it existed, made the notation in the Excel File and changed the images and links on the tabs on the sidebar and the Recipients Page.

In every other way, I treated Keri like any of the other parents, as far as communication inclusion, etc., with the exception of trying to figure out exactly WHEN to drop Becca's iPost in. Wasn't sure when the right time was.

Felt like the right time now. Especially since I was thinking about community and how much it has played a role in my life not just right now, and not just in making this whole project work, but also in helping me get through the darkest days when my journey through all of this started, way back in early 2009.


Like I said above, Keri already blogged about it some time ago, but in addition to all the super stuff she said in her blog post about Gary, the man who spear-headed this donation, Keri had this to say in an e-mail to me.

'All of our iPad folks would really benefit from the stuff he posts, of apps that are out there for SN kids. Basically he spends time reviewing them. He also frequently has “app parties” where he gets the developers to give codes and if you are lucky you can snag codes for free apps (Not just freebie of apps that are usually 99c ). Other apps are sometimes greatly discounted during these “parties” (weekend long web events).'

'Also, not sure if you link to the blog Babies with iPads (they also have a Facebook page). On a near daily basis they link to free iPad apps – those are usually apps that are .99 cents or so that are free for a day. Good to go ahead and snag freebies when you can, as long as you have iTunes and you can later sync into your iPad.'

Apps are very important, as I am beginning to understand. Yes absolutely, you have to have the device to RUN the applications, but the applications are what is going to be teaching your child.

Both sites Keri mentioned are great resources, and at some point we will try to put some links up to more. I don't want to become App Central. That isn't our goal. Our goal is entirely different for each Mission. Besides, a lot of sites have the App Reviews covered and covered well.

As far as Becca's iPad goes...my only regret? Not being able to actually be involved in getting it for her. But that is was purely selfish on my part. Only because Keri was one of the 18-20 or so people who was so instrumental in helping me through those first few weeks and months way back in March of 2009 when Bennett first received the devastating diagnosis of Infantile Spasms.


Back when I used to visit the Infantile Spasms Message Board more regularly, she and I communicated much more regularly, along with a lot of other folks who frequent that space as well. I really need to get back over there again and try to re-connect. At LEAST to see how to link to some of the folks through Facebook. The only reason I even dropped off is just because message boards simply became far less prevalent, for everything.

I used to have one of my own. Still do actually, and I NEVER GO THERE. All my geek toy pals and I moved over to Facebook. I don't even know what is going on there anymore. I have been meaning to update it and change it up to a Private Forum for a few close friends of mine, but who has time?

But Keri, Sinead, Mike Bartenhagen and so many others from that board really threw me a lifeline, and it would have been SUPER cool to have been able to send Becca the iPad. But at the end of the day, it was great that she got it so fast. And that was all that matters really. Besides, it provided me an opportunity to tell Keri what she meant to me in those days and that's fine by me.

PEACE.

-Ken
On behalf of:
The Mission: iPossible! Group

PS...Just wanted to close it out with this image that I pilfered from Keri's Facebook page, because I loved it so!

1 comment:

Anna said...

such great people and memories. Beautiful people, I am not on there regularly either since we werent able to adopt the little one we were caring for with Infantile Spasms.