Not long after the kids were diagnosed with a cystic kidney disease (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 loved them.
I got to thinking about Holland and the pretty picture I had in my head. I thought sure, it’s pretty, but it also sucked. For me. Who needed Windmills? And well, tulips are no sunflowers, sucker! I’ve been known to privately cuss about Holland, and I for a time then and maybe now, I live in a world where I would ban people to Holland forever in my imagination! Just ask Dawn, our co-founder. 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 them, cause it is lovely, in it’s own way that no longer speaks to me. To embrace what feels right is a lot of what any 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 (always 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, that would be a 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).
In the past, we’ve 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. Ironic is that we were left defending a point of view we personally didn’t agree with, but many people do.
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. Who are we to decide for them, when a resource has a large following/believers in ideas that work for them?
Some vial and hurtful comparisons were made in light of that particular situation which was really hurtful. In the end, for us, 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 go to either? Fine. I defend your right not to go. I also defend our right to present all of the travel options.
Originally posted on Kidneys and Eyes, November 2010. The picture on the home page scrolling was taken when our family traveled to Holland in July 2011 and Holland is a beautiful place, it just isn’t a place I compare to my life with my kids with special needs.
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