I was in a research study recently involving blogging, deciding upon content, deciding upon platform, media, etc. It truly was an interesting experience–I guess no one ever directly asked me to tell my story in such a way before. While they interviewed over a dozen already, many of which where “mom bloggers”, I was the only one interviewed who addressed experiences as a family living with disability.
Their takeaway they volunteered to share with me? Their experience with other parent bloggers did not include the same judicious protection of content/overcontemplation of concern regarding the forms of dignity I discussed, nor did it involve the level of scrutiny that dug as deep as our level can go. And yes, they do blame their kids for tough days or recognize the universal struggles in a laughable or relatable way and are rewarded for that relatablity on social media. No one else struggled in that balance the way we do.
In our world, there is a fine line which moves it’s position depending on who you are talking to. We have a job as family caregivers of disability to be relatable advocates who set the bar for how we and our kids are perceived by the rest of the world. And unfortunately, I do believe it can be at the expense of self care or which ultimately affects they way we cope within our family systems for the benefit of our charge. We are held to a much higher standard out there in cyberworld under much more challenging circumstances than other parents. I forgot about this piece I wrote a few years ago, but it was on a day I had a similar epiphany at the end of a long, hot summer. Sometimes, I want to say funny things about being a mom too. And yep…sometimes I am selfish.
There are some days that my heart breaks selfishly a bit.
Days like today.
As A2 gets older there really are no more play dates. While kids are generally kind, there are limits to their patience. It’s hard to figure out how to play with another kid who wants to stand at the bottom of the water slide flapping rather than going down. His peers are now preteens and the adults that are close by interpreting for him, ensuring safety and cuing socially reciprocal behavior are going to inhibit his peers age appropriate wing stretching.
Today, as I sat entering in my second hour in direct sun making sure my guy didn’t keep going past the “do not pass” sign at the base of the water slide, I couldn’t help but notice the world around us. I had nothing else to do but try to clear my mind of things…
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