Are you for real?

I recently saw an article ON FaceBook ABOUT FaceBook and how FaceBook  may distort our image of others and even ourselves.
“See?! Everything is lovely! My kids are beautiful!  My Instagram pics of my food are awesome! I do AMAZING , FABulous things!”

C’mon.  We ALL do it.
I mean, I am a pretty positive upbeat person, so I try not to be negative on FB.  Or this blog.  But I would like to think that I am fairly realistic.

But I thought about it.
And to be honest–
I, too, am guilty of gilding the lily.
I am guilty of the not telling the truth by omission.
I let all of you see here  (and on the Captain Jacktastic Facebook page) just how wonderful it is to live with Jack and learn from him
And while all of that IS true…

It also ain’t easy.

I don’t tell you about the tantrums.
I don’t speak of the head banging when he is not happy about not getting his way.
I dare not whisper about the hardship when he doesn’t want to eat  (he stamps his feet so quickly I refer to it as Flamenco Dancing!)
I leave out having to do things in a specific order so as not to antagonize.  I omit the time it takes to care for Jack.
I don’t want to bitch and moan about how EVERYTHING we do is about teaching.
I don’t want to discuss that Clay and I get very little grownup time together. (three hours! EVERY Thursday night! Good Lord willin’ and the respite worker don’t cancel!)
Then there is keeping up on all meds, tracking seizures when they happen,scheduling and keeping appointments at a clinic and hospital five hours away, researching new things about TSC, making sure Darrah feels loved and not pushed aside, work, regular family stuff like bills and shopping, oh and house cleaning takes on an extra added dimension when you live with Jack as toys get thrown EVERYWHERE, and extra clothes washing when there is a pee thru and making sure that there are enough chips in the house, and …………..

 

the list could go on.

and on.

But what good would that do?
Even is you are not a special needs parent., you know its rough- at least  intellectually.
I am not looking for pity or sympathy.
I am here to demystify.  I am here to educate. I am here to advocate.
AND
most importantly

I am here to see the silver lining–
to see the world through Jack’s eyes.
to be unafraid– like Jack
to be brave– like Jack
to put a different spin on this “lifestyle”.

I share the joy, the positive, the light, the beautiful moments, and the GOOD
because
in the end?
THAT is what truly matters…..
not what I don’t get
or don’t have
or what I may be missing.

Because from where I am standing?
THAT’S what makes my life worth living

and I’ll share that anywhere.

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