Vacation to Holland

Most of the time these days I’m pretty positive. I’ve discovered being negative really doesn’t help anything. The situation stays the same but I just feel worse. I realize this isn’t very shocking, but it was a big realization for me, and one I have to remind myself of regularly. I need some reminding right about now.

I’ve been feeling pretty negative this weekend. Could be just coming down from such a great time the week before or it could be I’m really missing our incredible next door neighbors who moved this weekend. Maybe I’m over training, or it could be a virus I’m pretty sure I’ve caught. But, generally speaking, I’m feeling more tired and irritable than I’d like. I couldn’t even exercise today and that’s a big deal for me.

Probably some of you have read or heard about an essay about parenting special needs kids called Welcome to Holland. It’s a great essay describing how when you are having a child it’s like planning a trip to Italy and then when a “special” baby is born it’s like being told you’ve arrived in Holland instead with all the disappointments and surprise that come along with that. It captures a lot of my feelings of grief and loss about having Meg and it has been a comfort to me many times, but today I thought a lot about that essay and felt like it didn’t really capture enough of what a strange experience this is.

Today I spent the entire morning at doctor’s offices with Meg. First, at the orthopedics office and physical therapist getting her measured for new leg braces which hopefully will prevent any casting or surgery to fix a tight heel cord I didn’t even know she had. Then I went across town to the eye doctor to get her a strap to help try to keep her glasses on her head. She of course just saw the strap as an extra fun challenge and conquered it quickly. Then I spent time on the phone with a company that provides “mobility devices” (aka wheelchairs) to kids and discovered that our chair which we’ve been waiting over 7 months for was denied many months ago and no one informed us. All of this is frustrating and disappointing in a way I don’t think I can truly explain. These devices (like glasses, braces, “mobility aids” and the like) are expensive and depressing especially when you know that they are not “fixing” anything, just trying to help her “reach her maximum potential” – a phrase I’m beginning to despise. Insurance does everything they can not to pay for anything. Luckily we have lots of resources and medical expertise but it’s still anger inducing. To top all this day off Meg has a terrible diaper rash that is preventing her from sleeping tonite so instead she’s wailed for over two hours and there is no end in sight. I found myself jokingly thinking, I sure wish I was in Holland right about now.

If I were going to rewrite the Holland essay I think I’d pick a different country. Holland sounds too pretty and easy. People actually choose to go to Holland after all. There is nothing pretty about the knowledge that Meg will need to be carried for a long time and my back is already hurting or that she may always need those diapers or that she may never talk to us. It’s sure not Holland all the time.  Today at least, it was maybe Ethiopia or Sudan. There is beauty there but it’s hard to see at times and you must look very, very carefully. You will also see difficult, terrible things you never wanted to see and hear things you never wanted to hear. You will have to learn a language that is incomprehensible to most (IEP?) and negotiate rules and bureaucracy that could probably replace a small government’s constitution. You must be tough and hardened in order to survive the trip and you must make sure you do not forget about everyone else in Italy. You also must forgive the Italians for not understanding your Sudanese child – for staring, asking weird questions, and ignoring you like you have plague. You must forgive them for not understanding you either since your trip has changed you forever in ways they can’t comprehend. Most of all, you have to get up every day and keep going – in Holland, Sudan, Ethiopia, Italy or wherever the heck you are and keep it together for everyone who counts on you to make sure their bags are packed and ready for the next trip.

Halleluia – the wailing has finally stopped – time for all the international travelers to rest and maybe tomorrow we’ll wake up in Holland.

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2 Responses to “Vacation to Holland”

  1. Dave Says:

    I love you. There is no one with whom I’d rather travel!

  2. Emma Says:

    This really isn’t directly on point, but the other day, out of the blue, Mary Emma started talking about Eden’s little sister and I reminded her Meg’s name and she started talking about how pretty Meg is. Mary Emma has excellent taste.

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