After graduating from culinary school, I worked in the kitchen of a fairly schmancy restaurant in San Francisco. (Yes, culinary school, you’re surprised, I know. So were my parents, since a culinary degree isn’t really the natural second step after a bachelor’s in psychology. But I digress…)
In professional kitchens, sometimes a cook will declare, “I’m in the weeds.” No, not that kind of weed. (Although, I think that kind of weed can get one into the proverbial weeds if unwisely used.) It means you’re behind. As in, service starts in twenty minutes and you’ve still got to pump out a batch of beurre blanc, poach that rhubarb for the foie gras, make three more purees, and you just burnt your port wine reduction. And someone just stole the one pan that you need to make the one thing, and no other pan will do. Working as a line cook did not help my hoarding tendencies, let me tell you.
It isn’t as if the restaurant can tell all those people waiting outside that, oh, sorry, we need a few more minutes because Jisun just burned her port reduction. Time marches on, and somehow you need to dig your way out. Often, with the help of kind coworkers, I did manage to figure it out, and my time in the weeds came less and less often.
I’m not at the restaurant anymore, but holy schmoly, am I in the weeds. Tall, scratchy, never-ending weeds.
(Here, I must apologize for announcing that I was pregnant and then promptly disappearing from the internet. Don’t worry, everything is ok. Latke is fine, the Taters are fine, I’m fine, the fetal Tater is doing just fine. Fetal + Tater = Fater?)
I got sick. Really, effing sick. I never got an official diagnosis of hyperemesis gravidarium, but that’s pretty much what I had. Couldn’t eat, couldn’t drink, dehydrated, puked every time I smelled anything at all. Ultimately, I lost some weight, which is not what you want when trying to grow an entire person. As an aside, I don’t think many people understand what it is about smells and having very bad morning sickness. It isn’t just the typically bad smells. Sure, car exhaust, cigarette smoke, rotten fish, those are very bad. However, so too are the smells of soap, freshly cut grass, and garlic. Even just stale elevator air can do it. Everyone’s triggers are different, of course, but it is about smells in general, not just bad ones.
Anyways. I spent the better part of four months curled up in a fetal position while my kids watched Frozen over and over (and over) again. Every now and then I’d get up to make them food, eat a couple bites myself, hurl, then lay back down on the couch again. It was just wondrous.
Latke really tried, but taking care of your sick wife, three kids, working 50 hours a week, and doing anything outside of the Essential-Matter-of-Life-and-Death category is just not possible. Once I finally started to feel better, I looked up, and it was official. The Kimchi Latkes household was in the weeds.
I just can’t seem to get it together again. No matter how many loads of laundry I do, how many things I organize, how many items I cross off the list. I’m still in that field of weeds.
Fortunately, like the restaurant, there are good people with me and Latke. Family who came to take the kids for overnights, friends who brought food and pitched in to get the house cleaned for us, strangers who helped when they saw me turning green as the kids ran in opposite directions at the un-fenced park.
In the meantime, the Fater seems to have grown despite almost killing me. I’m 22 weeks pregnant and all seems well. Anyone volunteering to carry this baby for the remaining 18 weeks, please email me.
I should probably not be too concerned about the weeds. Sunsets, hot summer days, hummingbirds. They’ll all exist whether or not I’m in the weeds. So I figure, no matter how many piles of laundry I’ve got, how many blog posts I’ve failed to write, and how many dishes are in the sink, I should still take the time to look up and appreciate the rest of my life. Mouse is learning how to read and write, which is sweet and somewhat hilarious (the English language is sort of messed up, dude). Chipmunk is busy trying to grow up so she can be the same age as her sister (I haven’t quite managed to get through to her about the whole space-time continuum yet). LP is close to walking and has a very demanding schedule of house destruction that he adheres to every day. He’s not one to shirk his duties, you know.
* Note: Anyone I owe anything to, I’m really sorry. I’m trying to dig my way out, I haven’t forgotten about you, can we still be friends?
Friends. I have some news. Read the rest of this entry »
These are words that most parents would not associate with learning that their child has a disability. Yet, those are three words I would use to describe my story.
My third child—we call him the Little Pirate—has Down syndrome. We didn’t get our diagnosis until he was almost three months old.
Our story began during pregnancy. Our homebirth midwife not only respected, but truly understood our choice to forgo prenatal testing. She had a sense of our family’s personality. She asked about our values and beliefs. I don’t believe that abortion should become illegal, yet I didn’t want one myself. For us, the information alone would not outweigh the accompanying worry and uncertainty. Prenatal testing is a complicated calculus and she helped us navigate it with no assumptions, no judgments.
Ultimately, we had an uncomplicated pregnancy and birth. The Little Pirate did not have many of the characteristics associated with the syndrome, and so no one suspected a thing. Things got more difficult after a few weeks, when our son opened his eyes and suddenly, the words Down syndrome rolled like ticker tape across my consciousness.
After just a few days, I already knew in the primal way only a mother can know—my baby had Down syndrome. I remember very clearly, sitting on our couch during a two-hour impromptu visit from our midwife, crying. We would have to submit to a genetic karyotype to confirm that he had Down syndrome. It felt like standing on an open prairie, watching a storm brewing on the horizon, powerless to stop the future from tearing us apart.
Then, our midwife told us that we could decline the karyotype test. There was no immediate medical need; we could wait. This was a revelation to me.
I hear all too often that diagnostic screening and testing are foisted upon patients as a matter of course. In my online support group, I was horrified to learn that many doctors never bother to explain the difference between a prenatal screening and a diagnostic test, let alone why a family would choose to undergo such procedures. Many families who have had birth diagnoses have told me that they were simply told that the doctors suspected Down syndrome, and test results would be ready in a few days. I can’t think of a more powerless way to receive such important news. Diagnoses are sometimes delivered as if a terrible tragedy has befallen a family, causing unnecessary pain.
We ultimately did get an official diagnosis, mainly in order to rule out certain medical issues common in babies with Down syndrome. By then, my husband and I had already begun to accept what a Down syndrome diagnosis could mean. We had the support and information we needed in order to peek down both paths, and understood that our family could be happy with either direction our lives took. It was with that sense of empowerment and agency that we chose to take our infant son to our local children’s hospital and find out, once and for all, how many chromosomes he had.
He had 47 chromosomes. We stood on the open prairie; the storm was coming.
Those early weeks were certainly not carefree. I had a flurry of obsessive research that prematurely aged me. I worried about health issues. I had to examine some very ugly beliefs I had about disability, and that personal growth did not come easy.
Still, the storm that was our son’s diagnosis was the prelude to a period of lush growth in our family. My husband and I stood together, our eyes open. There were some beliefs and assumptions we held that needed to be destroyed. The storm passed and our family was nourished in ways we never could have predicted.
We had weathered the storm on purpose, struggled out into the open, and tasted a deep acceptance that caused us to re-examine what truly mattered in life. Love. Inclusion. Respect.
I believe that with truly family-centered care and real-life support, my experience shouldn’t be unique to those who have made the same choices as we did. Families who find out that their children have Down syndrome prenatally, at birth, or after could experience the same level of empowerment.
I want change. I want to give families a chance for a better story.
The Down Syndrome Diagnosis Network (DSDN) will officially launch on March 21st, World Down Syndrome Day. DSDN is a group of eight mothers who believe that our stories can change. Through our medical feedback program, online community, resources, and local support referrals, a better story can emerge for families with a Down syndrome diagnosis.