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Traveling Options

April 20, 2011 in Featured, From Julia by Julia Roberts

Not long after the kids were diagnosed with ARPKD I came across that popular essay that many people in the special needs community identify with and it’s of course 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. I thought sure, it’s pretty, but it also sucked. For me. Windmills weren’t all that great, and well, tulips are no sunflowers. I’ve been known to even cuss about 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 them, cause it is lovely, in it’s own way (that 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 this site 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).

We’ve had to defend someone on this site who was challenged in an aggressive way instead of in a way that fostered discussion. Unfortunately the situation immediately resulted in a 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 so that member was never able to share her point of view.

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? For the comment that was left? We won’t delete comments like that but we do have to interrupt and say whao, let’s talk it out.

Some vial and hurtful comparisons were made in light of the situation which in this case pretty much tells me we can’t even agree to disagree, which is troubling. 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 see either? Don’t fly there. I defend your right not to go. I also defend our right to present all of the travel options.

The Dream Life

June 16, 2010 in From Julia by Julian Roberts

Julian and his kidsMany years ago as I tried to envision my future, I had a vision of a successful career, a beautiful wife, and healthy kids. I envisioned I would come home from a hard day at work to spend delightful evenings with my family and weekends filled with little league baseball games and piano and dance recitals. It may sound a little like an episode of Mayberry RFD but it is how I grew up and what I expected.

Although it all started in that direction when I met the love of my life, it all changed when we got the news that both our children had a rare kidney disease and an eye disorder that would not only require a life time of medical care but also put their lives in jeopardy. As we moved on we learned they have many extra educational needs as well.

I knew then that my future dream life would not be as planned… or would it?  What I have come to learn over all these challenging years of doctor appointments, hospitalizations, surgeries, lab tests, therapy appointments, teacher meetings, tutoring sessions, and counseling, is that I must work even harder to ensure that I have that dream life. My kids deserve it, my wife deserves it and I deserve it. There are many times that life gets in the way, that we get bad news from test results, bad reports from school administrators and counselors, but as a father and husband I must take time to leave the work issues, the medical/mental issues, the educational issues and find time to connect with my family, time to play and time to laugh. It is important that my kids and our family have the same opportunities, experiences and adventures as every other family.

This is a skill that does not come naturally for me and I’ve had to work hard to make the dream of a good family life a reality.

Is it easy to live the dream life? No. Does it always happen every day? No, but it is a goal. It is what I shoot for and work to achieve. I know I am successful when I look back over the past several months to see what first comes to mind. If I first remember doctor appointments, clinic visits and tears, then I know I have not been successful and need to try harder at the internal picture in my thoughts. However, if I l look back several months and my first memories are playing, laughing and adventures with my family, then I realize I have been successful at living the dream life.

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