When I was a kid, I didn’t think much about eating. I just ate. I come from farmers, factory workers, and teachers. We ate a lot of venison that my grandfather and uncles prepared and my grandmother and aunts cooked. I’ve never hunted in my life, and although I rarely admitted it, I never got used to the taste of venison. I’ve been a vegetarian for quite a while. The thought of eating anything that has had a parent keeps me awake at night. I don’t have the same expectations for anyone else. Like faith, it’s up to the individual.
For reasons that are a bit complex, though, I learned a great deal about nutritional supplements in the year before Ellen was born. Suffice it to say I had a personal scare and yes, I was one of those people who surfed the internet for more information and relief. The good news is that I’m quite fine (healthy as an elk). The even better news is that for all my surfing, I landed upon a forum for Ellen that I mentioned in my posting yesterday.
It’s called Targeted Nutritional Intervention (TNI) for Children with Down Syndrome. (Notice how the words “Down Syndrome” that rarely come out of my mouth — I much prefer “extra chromosome” — are appearing in this blog. I’ll only state for now that Ellen was born with an extra chromosome, but there is nothing down about her nor the hundreds of people with trisomy 21 I have met in the past seven years.)
The name of the TNI forum pretty much says it all. Parents are seeking, some calmly, some in states of alarm, answers for their children. The topics go way beyond nutrition, ranging from everything to bona fide medical studies to more esoteric therapies to doctor referrals. Because our lives were based in the German-speaking world in Ellen’s first years, we joined the German rather than American TNI forum. I still follow it every day, and I’ve gained not only food for the brain, but a kinship with families who are united in ways I couldn’t have imagined before Ellen was born. From all kinds of distances, we share hopes and disappointments, joys and frustrations. Some forum members have advanced degrees and high-paying jobs, others are struggling to pay the rent. There is a stunningly minimal amount of ranting. Our sharing is contained, sincere, usually to the point.
Thanks to the TNI forum, Ellen has followed a nutritional regimen since her first days, and Ben and I are convinced it’s made a huge difference in everything from her intelligence, to her memory, even to her confidence. I again want to state that for a child with an extra chromosome, we have been extremely lucky with Ellen. We count our blessings every day.
Ellen eats much more than what is included in the regimen shown in this posting. She loves her chicken nuggets, pumpkin pie, and dark chocolate ice cream. She’s a kid! I want her to savor food and life — but probably not venison. To my extended family, especially on the maternal side: sorry!