Musings: Aliyah With Special Needs
It occured to me the other day, as I sat in the lobby at Hadassah Mount Scopus, that other parents live different lives. I've had this thought before, but it struck me again with more force because I found myself (again) waiting in a hospital for a specialist.
My son has mild CP. One thing he needs, besides a pediatrician and lots of love, is a neurologist. Now, neurologists come in all flavors: we've had the cold-blooded expert who is absolutely brilliant but can't communicate with the patient or parents; we've had the smart but highly overbooked expert who has no more than 10 minutes to give us every 6 months; we've had the warm, bright, caring neurologist who went the extra mile and we've had the idiot who told us to insitutionalize our kid because he'd never walk, talk, or go to school.
The best neurologist was the one we had most recently in California. But our aliyah made it impossible to keep her as our doctor, of course. However, the Boy's pediatrician came to the rescue here in Israel. We had already met the neurologist in our medical clinic. Didn't like him. Rushed, hurried, wanted to know why I was bothering him. When I later met with the pediatrician, I told her I needed a better neurologist. She said she could give me names of the best neurologists in Jerusalem but the top three aren't in my kupah. I don't care, I told her. She gave me three names. I looked at the list, and asked, "Which one would you take your kid to?"
Now I know the professional reference rules. I always knew as a lawyer that I could not recommend any particular lawyer to people, but needed to give them a list of at least three people they could call. The doctors have similar rules, hence the pediatrician's list of three names. To her credit, without batting an eye, she named one of the three as her choice if it were her kid.
We made the appointment to see the neurologist, who works at Hadassah Mt. Scopus. We actually got in to see him within four months, which is pretty extraordinary--the current wait is 6-9 months to see him.
I was pleased with myself that I was able to actually navigate the Information booth, the payment office and the directions in Hebrew. The neurologist I had to do in English--fortunately, he spoke Hebrew, English and French fluently. He reviewed the documents and reports I brought with me, asked for copies of the ones he found pertinent, reviewed the CD of the Boy's most recent MRI, and came up with a plan for further tests and follow-up. He was clearly interested in my son, and that's one of the best qualifications of a doctor IMHO--not rushed, not too busy, not disinterested, not bored or tired. This is a doctor who likes his work, and finds his patients interesting.
However, I had to pull the Boy out of one of his favorite classes to make this appointment and as we sat in the lobby I realized that despite the Hebrew, the setting was oddly familiar. Yet another hospital in my child's life, another doctor, another medical appointment and more tests and evaluations. Don't get me wrong -- I'm very grateful that the medical infrastructure of the modern world is as advanced as it is, and my child benefits from all this. But other children miss class for dentist appointments. Other children leave school and go to football practice. Other parents take the afternoon off to go to the track meet and root for their child. Other 16-year-olds can go over to Avi's place to go swimming without parental supervision because their parents haven't been told that their kid might have a seizure and drown. Other 16-year-olds can walk to school alone because their vision isn't so poor that they're likely to step in front of a speeding taxi without seeing it.
So even though the signs are in Hebrew, the conversation is in Hebrew, sitting in the Hadassah lobby had an oddly familiar feel to it. I wondered if the Boy ever felt like he was "missing" something in that he didn't go to football practice, or enter a swim meet or do the things that most adolescent boys take for granted.
How do you answer you son when he asks you, "Why did G-d make me this way?"
What comfort can I offer him when he realizes, as he did this year, that his condition was not something that he would "grow out of" as he told us he thought would happen if he just kept trying harder.
I know what it has meant to me. To me, it meant that I have a child who is one of the most generous and affectionate kids in the world. It means that I have a child who I value for himself and not because of the bragging rights of reflected glory so many parents seek ("MY son is a doctor" and "MY daughter just made partner at Pillsbury, Madison & Sutro"). I'll never go to a football practice, but then I wouldn't trade the football practice or track meet for what I have: I have a child who loves me unconditionally and acts in ways that show me his love every day.
Photo in front of high school last year by Ima--hence the frown. "Not another picture! I hate having my picture taken! And I'm late for class!"