Not long after the kids were diagnosed with ARPKD I came across a popular essay that many people in the special needs community identify with and it’s called Welcome to Holland. It uses the comparison of raising a child with special needs like landing in a place like Holland when you were really expecting Italy.
When I first read it in those early days, it resonated with me. It did because I was still wrapping my mind around raising two kids with unbelievable needs and it made sense…I wanted healthy kids, I didn’t get them, but I still love them.
I got to thinking about Holland and the pretty picture I had in my head. Special needs parenting wasn’t pretty. It sucked in a lot of ways that had nothing to do with me not wanting my kids here, or being grateful they were alive. For me. Tulips are no sunflowers. For me. I’ve been known to privately rant about people and say, “Well, they can just go to Holland.” For a lot of people I know, it’s a metaphor that really speaks to them. I actually find it beautiful that it speaks to some people, it just doesn’t speak to me. To embrace what feels right is a lot of what parenting is at its best, right? I embrace that we are different, because we can learn from each other if we’re open to learning. It’s what makes my little corner of the world interesting.
When Dawn and I were working out the plan (yes, that’s ongoing!) for Support for Special Needs we talked a lot about what type of community we wanted to build and we always came back to an inclusive one at the core. We wanted to bring to focus different resources for families and create a safe place for dialogue.
I think we’ve done that and I’m proud. Do we believe/get behind every idea presented on the site? Um, no. But I’m proud that we share what we do and for people to present questions, if they desire. Is everyone going to agree? Um, no. Because that’s not real life (not in my world anyway).
Recently we had to defend someone who was challenged in an aggressive way instead of in a way that fostered discussion. Unfortunately the situation immediately resulted in that community member leaving the site and for that I feel bad. I also feel bad that there wasn’t a continuing dialogue that offered a different point of view. The back and forth conversation never happened.
We present resources and we trust that people in the community will do the research they want to and need to to make the decisions that are best for them/their kids.
It’s okay to agree to disagree. Presenting resources wins out, because everyone deserves to find their village. Even if it’s in Holland. What works for one in Holland might not in Italy. Also? If you want to travel between Holland and Italy, we’re behind you. Don’t want to see either? Don’t fly there. We defend your right not to go. We also defend our right to present all of the travel options.
Originally posted November 2010