Foto Fabulous Friday

If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music which he hears, however measured or far away.

~ Henry David Thoreau

Foto Fabulous Friday

Getting Older and Changing the World...

Getting old is not for sissies. - Bette Davis

Jacob is three and a half, going on four. The bright light that this little person is in our lives, well..

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The last three and a half years has seen a lot of celebrating and a lot of challenge. These things coexist comfortably and become entangled in our memory in a way that somehow makes that bright light even brighter.

This Journal hasn't gotten much attention lately. Like everyone else, we are occupied with daily life and now that the Jacob is through and over so much of his medical challenges and updates are less 'critical' in nature, well I was thinking maybe the normalcy of growing up... getting older, doesn't need much journaling. Also, to be honest, since we lost our Aunt Berta last year, I was having some trouble hitting the publish button knowing she wouldn't be there to read it (grief has a way of sneaking in to so many places.)

I think I was wrong though. Wrong about getting older not needing journaling. I think it does.

We have some work to do and none of us will be as well equipped to do it unless I keep writing/sharing.

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See, we have this little ambassador in our house that changes the way we look at things, expands the way we understand things. He is remarkably the same as other three and a half year olds and at the same time very different.

I think we should probably keep talking about that.

A blog I sometimes visit had these words in a recent post...

Like it or not your child has been born into a life of advocacy. By the sheer nature of their disability and their difference and by the circumstance of the timing of their arrival - they will live a life of cutting new paths, challenging preconceptions and prejudices and opening the way for others who follow. We are still into the generation of children who are growing up in homes and schools rather than institutions and workshops. We are still fighting with schools, with neighbourhoods, with communities for the right for belonging, even while acknowledging that welcome still may be a generation or two away. The fight is not yet won and the ground gained is not yet firmly ours.

The only way I know to make that ground gained more firm and to help accelerate the evolution from belonging to welcome is to keep talking about Jacob, so that we and the army of people who love him learn to be comfortable with disability and difference .... maybe in a way that we may not have considered or felt before. That's the kind of stuff that changes the world.

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Lucky for all of us, that expansion of our understanding disability/difference does not necessarily require heavy reading or intense study. Watching this little boy navigate the world with the same kind of tenacity as any other three year old is all that there really is to do.

He will do the rest for us.

Trust us.

~

The journal is back.

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A, B, C, D, E, F, G.....

I can't seem to get out of my own way to get a post up here.  I have about half a dozen posts started, all unfinished.  I'm not getting anywhere...

SO I am just going to rip the band-aide off quick so-to-speak and post a video.

Jacob and his A, B, Cs. It's a big deal all this articulation that is suddenly appearing.  Usually we practice with flash cards and he does great but in this video we were playing on the lawn and he was loving performing for the video screen - so no flash cards.

Enjoy!
 

Link to Post/Video

Oh we hate saying goodbye. But moving on, we must.

This past week was a transition for us. The previous week we had to say goodbye to Ms. Emmy. We miss her terribly and we stumbled through as best we could.

She is moving on and heading back to graduate school which we are thrilled for her about and wish her all the best! She is on her way to be wildly successful. We know this for sure.

We have no doubt that her brilliance will always be a little glimmer in Jacob's life. We were lucky to have had that brilliance as a big full time glimmer for the last 2.5 years and are so thankful for that.

These two have been best buddies through illnesses, surgery, medication changes, tube feeding, learning to eat, many many home therapy appointments, travel to extra art and therapy classes, a gazillion trips to the park to play and infinitely countless laughs and giggles.

And more laughs and more giggles. And more laughs and giggles...

 

The saving grace is that our summer substitute is familiar and wonderful so it eases the sting a bit. But we are going to be in a world of hurt when the fall rolls around and we have to find a Ms. Emmy replacement... we can't even think about it right now. Talk about big shoes to fill.

Jacob's team just wouldn't have been the same without her!

~

 

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