Do you ever read something or hear something and wonder, "Did I hear that right? Did he/she meant to say that?". Well, this morning I received what felt like a sharp rebuke from a friend, not necessarily a close friend, but someone with whom I'm certainly friendly and with whom I have regular contact. It was in the context of me asking on a social media forum about when a particular meeting was coming up, and I joked about myself in the question, saying something like "well if I were more organized, I'd probably know about this meeting which is about organization!". And he responded by saying how nice it would be if the group to which I was referring had a website, a calendar, etc... in which to communicate upcoming events. Now it's very possible that this person wasn't trying to be snarky in any way and that his tone was intended to be completely benign. But it felt like a slap and so I thought, "hmmmm I may need to consider this a bit". And so I did a few minutes later, while Shalom (our Newfoundland) and I were schlepping ourselves around the park a few times (okay, okay, I'll be honest: I was schlepping pitifully, Shalom effortlessly trotted for the first couple of laps around the park and then she too began schlepping and trying to peel off toward the Suburban she off down the hillside as we rounded the corner).
Back in the day when Hayden was a baby and our hair was on fire about forming a Down syndrome support group for parents in our community (there were no active Down syndrome groups or disability groups of any kind), I was unbelievably arrogant, now that I look back on it. The group we formed really was all about "us", but I did my level best to dress it up in a way that it looked like I was serving others though. Don't get me wrong, we DID want to connect with other families, we DID (and DO) want to make sure that parents knew everything they possibly could about feeding methods, different types of therapies, how to create Infant Family Support Plans and IEP's that really would serve the individual child, and we really DID want to have friends that would share our journey through disability with us, etc...., but underneath it all I'm pretty sure my attitude was, "I've gone to all this work to make these meetings happen; I send out e-mails, I make fliers (this was WAY BACK in the day before a common schlub like me would even consider creating a webpage on my own. Come to think of it, I don't think this schlub would do it even today!), "I make phone calls letting people know what's going on out there in the community, the least "you" can do (the "you" being that parent of another child in the community with Down syndrome) is pay attention! I'm working here!!" Ya, I was all about having a servant's heart.
So the medicine I got this morning may or may not have been intended to sting, but since it did sting, I take it as a welcome sign that I sorely needed a dose of humility. A little trip down memory-lane if you will; to remember back in the day when it was just Hayden and us, and then a newborn baby girl (and yes she had significant special needs and we were VERY busy on every level trying to provide her with supports and services all the while trying our best to adopt her-but it seemed a LOT simpler then) and how our lives revolved around "us" and our efforts "for" the community without really stopping very often to take into consideration what those other families were going through at the time and what could have been preventing them from jumping in feet-first. Without sounding like a martyred soul, raising a child (even a young one) with special needs is well, special. There ARE more appointments, there IS more paperwork that ONLY you can take care of. There are more stresses on our every day lives than that of a typical family. And that's just if the child we're talking about is "healthy", not requring many medical interventions and not taking into account the other children you may have and just all it takes to be a parent. Ya, it's crazy!!
Since leaving that town where our kids were born a few years ago, our lives have taken a couple of significant turns; geographically, spiritually, emotionally, etc.... And while Hayden has been relatively "healthy" overall, for the first seven years of his life he had life-threatening ear infections, eight major reconstructive ear surgeries (including peeling back the ear itself and ridding the middle ear of potentially deadly bacteria) and a life changing bout with Infantile Spasms, which forever changed Hayden and our family. About the time Hayden was getting healthy (and we began homeschooling,-NO coincidence there with the state how his health steadily improved), we began to realize that our daughter was exhibiting some traits beyond what knew her challenges in the sensory integration arena to be, and that has led us to the world of autism. So for the past six years (and counting) our days are taken up mainly with getting through with as few blow ups as possible. To say it's been rough doesn't even begin to describe what most of our days are like. I'm glad I didn't know then what I know now, but I sure wish that I had had more compassion for my fellow parents on the journey and what they could have been experiencing as we were on the road together.
Of course hindsight being 20-20 and all that, I sure hope that despite my ego, I helped even one person and never made someone feel small. And if I did, I hope I have the opportunity to apologize one day.
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