I'm seen a lot of blogs talking about the poem Welcome to Holland by Emily Perl Kingsley, including a nice interview with the author on the blog Love that Max. I don't know when I first read the poem but it was sometime during the 2 months Miss Roo was in the NICU. At that time in my life, in the earliest days and the tip of the iceberg in coming to terms with her diagnosis, I really appreciated the words Kingsley had written, inspired by her son who has Down syndrome. I still think the piece has the ability to give some parents a great deal of comfort and help them in developing a positive perspective on an unexpected turn of events in their lives; but only in certain circumstances.
Marisa faced what felt some days like insurmountable medical challenges for the first year of her life. I didn't have much time to appreciate "Holland" because I was in the car driving back and forth to the hospital most days and spending way too much time pouring over medical bills and doing Internet research to try to come to grips with what we were facing given how she presented at birth. As the acute medical issues started to wane and we had more time at home, the drive to work on developing skills, while trying desperately to meet the needs of my other child and all the other aspects of keeping home and hearth going, meant that I had little time left to stop and smell the tulips (do they even have a smell?). I'm not a big fan of tulips anyway.
Then as even more time passed, the behavioral challenges started surfacing, making life just that much more difficult to manage than it had been with her older sister. That's not to say big Sis was a perfect angel, nowhere near, but I could take her pretty much everywhere I wanted or needed to go without worrying whether she would flee the scene or create a scene, or both. Big Sis and I used to go out everyday and the only issue I faced regularly was dealing with a case of blossoming conspicuous consumption and the overwhelming drive to own every Beanie Baby ever mass-produced. With little Sis, the time it took to steel myself mentally and prepare my psyche emotionally, was usually more than the time it would take to run the errand. Let me stop here and say this loud and clear : I was not and have never been ashamed of my daughter or her disability, I just discovered early on that if I needed to go out to a store to get something, it was better to do it when someone else was watching my child at home. Things have been getting much better over time, but I still don't take her some places by myself. The park is fine. Starbuck's is fine. The mall or grocery store are not. Maybe we'll get there one day.
Back to Holland. I still think the poem is lovely and see it as helpful for certain families; and isn't it nice to find uplifting pieces written by parents of kids with disabilities, especially when you are starting out on your own journey? That said, though, I totally get why the piece does not resonate with many families and why some might even find it offensive, though that was obviously not the author's intent. I did experience caring for a medically fragile child when Roo was very young, but that has not been the case now for several years. She also does not have Autism, and although I know lots of people who fall on the Spectrum now, I can't speak to what it is like day in day out as a caregiver for someone with that diagnosis, especially on the more challenging side. So, I guess I can truly see both sides of the like/loathe divide, and would place us somewhere in the middle.
What is often the bottom line for me, though, is how would someone looking in on "Disability World" from the outside, or someone who will join our vast and diverse community one day, feel after reading a piece like Welcome to Holland? If it offers one iota of a change in someone's preconceived notions of people with disabilities and the families who love them, then it's worth all the extra discussion.
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