My best friend is a lady who lives down the street with three hydrocephalic boys. I’ve mentioned her before. And whenever I am feeling particularly beat up, my butt usually ends up on her couch. Needless to say, we had a long talk this morning- about yesterday.
Being a “special needs parent” is not like being another kind of parent. Apparently there are people here who don’t know that, or don’t want it to be a reality. But it is. Parents who do not have special needs kids really and truly have no idea what it is like to have a special needs kid, or what it is like to be a special needs parent. Most parents are living it up in Italy, and we’re over here in Holland- or, probably more properly, India.
I love India. No, the real India, I mean. I spent three months there, and a separate three-week trip before that. I wish I had been there longer. I’ve never been to the real Holland, but I’ve been to Belgium and Germany, both of which are spotlessly clean, at least in the tourist districts. They are beautiful, wonderful places… but clean. Very, very clean. And in many ways, very like places in the US.
India is a whole new world. There is dirt, grime, heat, poverty, cows, beggars… the whole crunch of human life. Clean water comes in bottles. The hotel room uses a geyser for hot water, and it only will heat a couple gallons at a time, and then you use a bucket and cup to actually take the shower. Air conditioning is a rarity- as is refrigeration. In the villages, you’re lucky to have running water, and you have electricity for only a few hours a day (and not consecutive hours). Paved roads are a city “thing,” motor-rickshaw is the transport of choice, and cows have the right-of-way. Living in India when you expect the standards of US living is a really big challenge.
If you spend your entire trip in India focusing on these challenges and wishing you were in an international hotel, you really miss the wonders that are India. You would miss sitting on the far side of Sanchi Stupa 2, in the breeze, with the scent of ashoka blossoms and the plateau stretched out below you. You would never see a shrine in the middle of road, draped in orange and yellow garlands and filled with carnations, while incense and the ringing of bells fill the air. No one would be able to run up to you from the local temple and offer you prasad, or ask you to hold their baby while they take a photo. You would never see the lights of navaratri or the colors of a fruit market, stacked high in the morning. You’ll never share lunch with a troop of monkeys. If you don’t go into that cave that smells of bat dung, you will never see the paintings of Ajanta.
At the same time, what’s so wrong about sometimes wishing you could stay at an international hotel and have a nice, gourmet dinner? Or just be homesick, wishing we were in a comfy living room with a TV, wearing our favorite pajamas? Our problem is whenever someone here mentions being homesick, we’re told that India is a beautiful place, it’s where we are, and we shouldn’t “be that way.“ The Dutch and Indians often have no idea why Italy is such a big deal, and get insulted when someone wishes they had seen the Sistine Ceiling. Did these people never wish they had won the lottery? Never wonder what life would be like if they lived in a different house? Have they never seen the Monty Python skit about the accountant who wants to tame lions? But we, as parents, are not permitted to be homesick. We aren’t allowed to wonder about dreams we once had, or mourn their loss. After all, we’re moms and dads. We’re not supposed to be human…
Meanwhile, my long talk with my friend…
We “forget” that our kids are “disabled.” This is just who they are. When you live in India, India is normal, and you spend weeks on end not even thinking about Italy. Our kids wouldn’t be who they are if they were not disabled. On the other hand, they wouldn’t need the help and support for the rest of their lives, either. Joey could play with the other kids instead of spending whole days in therapy-- basically, in school. For those of you who have forgotten, most kids like vacation a LOT better than school. But then, most kids don’t scream bloody murder when they are served their spaghetti in a blue bowl instead of a red one, or when they have to go to the park instead of the pool. They can swallow their food without being taught to do so.
My friend is sometimes sad when she sees kids walking down the street, hand in hand with their mom. Her kids will never walk down the street. She will probably never know the feeling of having her children tell her “I love you.” She doesn’t dwell on it. Her children are not a burden to her, she takes pride in every little accomplishment they achieve, she loves them and supports them. We trade phone calls: “Max sat up by himself today!” “Great! Joey answered a question today!” “HOORAY!” They are our children. But there are those moments when we are reminded that life was going to be so different. We were going to have jobs, spend afternoons in the park, go for spontaneous trips to the zoo or the grocery store. It would be nice to be able to join the other parents down at the local eatery for a beer now and again. Just now and again. According to many folks who emailed me, having such thoughts and moments make us anything from mean, horrible parents to outright evil people who should give up our kids to the State for foster care. Our lives are not as scrubbed and tidy as Holland. Should I wish it were?
The real world really has dirt, and poverty, and heat, and irritation, and inconvenience. It is beautiful, anyway.