The demarcation line through my silence, with no words on one side and no time on the other (seriously, this past week at work was effing insane), runs through the day that brought, despite whatever it was that the world's most respected groundhog saw one fine sunny morning nearly a week before, a thaw so profound that it was simply beyond my ability to resist conscripting it for a metaphor, however glaringly obvious.
I went outside to photograph the patterns in the melting snow without bothering to put anything over the tanktop I was wearing in the house. It was just a bit chilly. And later that day, before we left for the dinner our friends put together by way of saying they were sorry for not calling us on the anniversary, yes, even before that dinner, I felt released. I felt that I could, once again, write.
The week I was mute felt like I was walking through molasses, energy sucked out of me by every.single.thing. But maybe, to go with the newly conscripted metaphor, I was frozen.
Everything that week was ordinary, unremarkable when my internal clock insisted that it should be, you know, most remarkable. And at the same time it was all a little off kilter. Starting with my house turning into stomach bug central, with JD out of it for most of the 31st, and my sister and brother-in-law both succumbing to the yuckies and not making it over for the dinner I planned to cook. So the dinner got scaled down, what with barely any stomachs fit for duty. But Monkey and I did make brownies. From scratch*.
She changed her mind. It used to be the cupcakes she wanted to make, but it switched to brownies some time in January. She couldn't really explain why, except for something about not wanting to make frosting. If I was to offer a guess as to the reason for the change, it would likely delve into the implications of having something that looks like an actual birthday cake for someone who is not here to partake. That's the thing that made me think last year that we are not a birthday cake kind of a bereaved family. I was pretty sure we are not. Until Monkey told me, sometime late spring-ish, that we should have cupcakes for A's next birthday. It came up a few more times since, and she was rather attached to that plan. But when, with a few weeks still to go, I asked her about what kind we should make, she changed it. Of course now she wants to make these very same brownies for one of her own several upcoming birthday parties. I guess it remains to be seen whether she insists on frosting then.
My mom was visiting for the weekend. Which was great for Monkey and the Cub, but, at times, too much for me-- I really felt the need to cut out the random chatter. (My mom mostly gets it. It's just that sometimes she doesn't get that even if not discussing something NOW means that we won't get to for a while, or in person, one must still let it go, for the sake of my headspace. But we also ended up having a good conversation about that, so it's all pretty much ok.)
Our friends didn't call. That was a twofer-- not only did it hurt, it also contributed greatly to that just an ordinary day feeling that was so maddeningly surreal. They all had different reasons-- one lost track of the dates, several didn't remember the dates anymore, just the general area of the dates, and one remembered, but couldn't figure out what to say,-- but I spent a good deal of the next week telling them all (individually) how hurtful it was. And whooo boy, was that ever draining. I think that for a good while there it was having these conversations that kept my blog mute button firmly pressed-- I only had energy for one or the other. To be fair to the friends in question, they rallied, albeit late, with an apology and a dinner for us, which is how people from the Old Country show contrition and make amends.
The day before the dinner, last Shabbat, was A's yahrtzeit-- anniversary by the Hebrew calendar. Because that calendar is lunar, the dates shift around a lot from year to year with respect to the Gregorian one we are used to. Last year the yahrtzeit was nearly two weeks before. This year-- a week later. Next year-- only days before. Yeah, I am sure that's going to be fun.
We went to synagogue, and we went up to the Torah, and the Rabbi did his shpiel, which was very nice. He talked about memory, and inspiration it brings, and the Cub was in the sling on my chest, and Monkey stood with us too, holding at first my hand, and then Cub's.
The next day the snow started to melt, and our friends put together a dinner for us, and somewhere between those two things I realized that I could write again, and breathe. If only that silly work thing didn't get in the way...
It's funny, I think, what sticks with you. Two years later I am not nearly as shellshocked as I was. I still don't think there is a cosmic reason, or that one good enough could possibly exist. But I am willing to examine my remodeled heart.
The day after A's birthday this year (check that out-- I can say birthday now; couldn't for the life of me last year) was insanely busy. It was the day I was to cook dinner for one hundred-- Monkey's school was having it's annual social action day, with community dinner to follow.
When I first volunteered, I thought it would be good to have something big to do the day after, that it would be just the thing to pull me through the anniversary. In the end, due to the all-mighty mission creep, it was a lot more work than I was thinking I was signing up for. Start with the shopping and the coordination beforehand, add the couple of hours of cooking I already put in Friday, cap it off with the whole stomach bug-induced lack of helpers for a good part of the day, and you can see how I was a bit spent by the end. That, and damn near bursting-- I brought the pump with me, but never had a chance to pump. That's right-- couldn't find twenty minutes in the nearly ten hours I spent at the school that day.
I cooked that dinner in A's memory and honor. I cooked it in a way that was never accomplished at the school before-- the dinner accommodated every single known food allergy at the school. A real community dinner.
The funny thing is that before Monkey started school food allergies were not at all on my radar, not even a little bit-- not a part of our lives, and not really at the forefront for anyone else we knew. And yet, slightly more than a year later I was volunteering to cook the dinner in large part so that I could demonstrate that with just a little thoughtful planning we don't have to leave anyone out.
Do you think bereavement changes us, or do you think that underneath we are still who we are? I know I've participated in this discussion before. And I know I've rallied against the silly notion that we shouldn't let our dead children change us. Why the hell not? Aren't we supposed to be forever changed by having a child? Doesn't it follow that having a dead child might change you just as much?
But maybe, as my friend Aite has said from the beginning, maybe we are the same us that people know, only now with a very shitty thing to have happened to us. I am beginning to see the wisdom of this view as I interrogate and disentangle my thoughts and emotions. And as it turns out, this issue is connected to A for me in the oddest of ways.
I have always had a sense of justice, and I have gotten myself in trouble more times than I care to admit due to this seriously inconvenient trait. (This is also, by the by, why I have such strong dislike for the people seeking to inject religion into science curriculum-- given how hard it is to correct misconceptions, these people are literally limiting kids' life potential, making them that much less likely to become doctors, scientists, even engineers. Ughhhh....) So by last summer it burned my hide that the Parent Association wouldn't change the format of their summer events to make sure that all families could attend (in the summer food gets on everything, so yeah, a serious reworking of the format would've been necessary), and by fall I was no longer willing to just hope they get it right. In the interest of full disclosure it is a friend's family who is most often affected by lack of accommodation, but even before she was a friend, I minded not at all any of the measures that the school and the classroom were taking to ensure safety without putting kids with issues into a you're not like everyone else box.
It took a good deal of digging around in my head for me to figure out why I am reacting this strongly. The way I have been able to articulate it to myself, it goes like this: my son never had a chance. It was an accident, unforeseen and unpredictable, that took away from him and from us every other chance he would've ever had in life. So it bothers me a great deal when people, be it through carelessness and thoughtlessness or with actual malice, limit a child's horizon.
I can't do much about it. But for one afternoon I could make it so that kids with allergies could sit at any which table and eat what everyone else was eating. (And maybe that other parents, the ones for whom allergies are not a part of their daily lives, see that inclusiveness is not that hard to achieve and, you know, decide to give it a try too...)
*They were raspberry truffle kind. We cut the sugar in half as suggested in the reviews, and we used Splenda baking blend, which has half the volume of sugar. So in total we reduced the volume of the sweetener by 3/4. All the better for the remaining volume to become one with the chocolate. Oh, and it turns out they are even better the next day, after the chips have the time to return to their self-contained ways.
20 comments:
It's interesting to think about food allergies because here in Germany they are not only ignored, but actively lobbied against, as it were. I was shocked to see my younger come home toting peanut flavored chips and when I spoke to the ped here, he said that peanut allergies basically don't exist in Germany. I guess they kill them young with anaphylactic shock so the genes aren't passed?
What kind of allergies did you cook to avoid? I guess that I generally am very lucky to not yet have concern over food allergies- all ours are contact/skin prolems, which is stressful enough as one finds out play dough and school soap can cause great problems.
Nut allergies are easy enough to avoid, but did you go gluten-free, lactose-free, etc? When I lived in Westchester, there seemed to be a trend to that which led to the most awful tasting cakes I had ever had.
I also never know what to say to people on anniversaries of sad events. It's even worse when it is a person one doesn't know in person. When is it obtrusive? When is it something I should say? Is it offensive to ignore the occasion?
What an amazing thing to do Julia. That must have taken real effort. The food looks amazing and now has me thinking of dinner.
I find more and more that of all the emotions silence is the one that takes over me know. I just end up feeling wordless. It's hard. I sometimes think tears would be so much easier. I'm only just starting to come to terms with the Birthday term. It still feels strange, but less so now.
A you are much missed and much loved x x x
@G~ I've know of other countries where food allergies are rare to nonexistent, but here in the States they are definitely on the rise. The teachers in Monkey's classroom are in possession of multiple Epi pens for multiple kids, and there are hand wipes at the entrance to the classroom because of the concern for serious contact allergies of the kind you mention. The cool thing, though, is that the kids themselves are amazing about it-- they are all incredibly protective of their allergic friends, both body and soul. They look out for physical dangers for the allergic kids, but they also care to be inclusive where it is in their control. Even if I was so obliviously inclined as to plan to serve something at her birthday party that not all kids could have, Monkey wouldn't let me. And I love that part. Of course, that is all made much easier by proliferation of commercially available mixes that make very yummy allergy-friendly cookies, cakes, cupcakes, brownies, etc. Some of them are even gluten-free. We have a local brand that we like (and always keep a couple of boxes of their chocolate chip cookie mix in the house in case our allergic friends drop by), but there are a bunch that we tried that are all pretty good. I know the awful-tasting stuff you mention, but it really is much much better these days. In fact, dangerously better... yum!
At the dinner we did the whole nine yards-- gluten-free, milk-free (both for lactose and for the milk protein some kids in the school are very allergic to), egg-free, some kinds of bean-free, nut-free, seed-free, and I am forgetting what all else free, but we really did avoid an incredibly long list of allergens. Curiously, nobody in the school that we know of is allergic to soy or corn, but those too were absent from the main dinner, and only present in the baking mix we used (the same one as I was talking about above) to make cookies for desert.
As for knowing what to say... it's a tough one in the sense that each person/family is different. Some people are very private and would rather nobody intruded on their grief. But many others are instead hurt when their loved ones are not mentioned. The only thing I can tell you is to take cues from the bereaved themselves. And if you are not sure, it is almost always ok to ask them whether this something they want to or are ok to talk about. In the same way you can ask, with some time to go until the anniversary whether it would be ok for you to contact them then, to let them know you are thinking of them. The reason I confronted my friends is that we have always been very open about what kind of grievers we are. These were the friends who were there for us in incredible ways two years ago and on many occasions since, which is why it was so hurtful for them to be AWOL en masse this time. And had I allowed the hurt to fester by not letting them know what was up, there would have likely been serious damage to the relationships. To their credit, they understood that part and were grateful that we told them instead of sulking.
Yes, I've gone thru those frozen periods too.
I think cards are a great way to go to remember dates and all. We received several last week.
I have food allergies, and it's a main way I measure my friends. My friends remember, my friends go out of their way to accommodate (even tho I don't ask), much like your little Monkey. But really, it doesn't take them as much effort as I used to fear, but they are willing to look into it, buy a slightly shifted product, and that is what matters. I am guessing that you have inspired some of the more kindhearted parents at the school.
What a great thing to do and a way to honor A. Alhough it doesn't sound like you had enough help!
As far as I know none of the children in my daughter's school have allergies to the extent that parents/kids need to be told although the school kitchen does avoid nuts as appears standard practice these days. Ditto pre-school and friends. It does seem far more prevalent in N America but it is difficult to see why.
I'm sorry your friends didn't remember. I expect there was a reticence to putting the date in the diary or on the wall calendar - for someone on the outside of the family it perhaps felt a bit morbid to do that? My sister marks her husband's death with a picnic so people know and are thinking about the date with her whether they come or not. Not subtle but it helps her and her boys mark the fact that even 2 years on now the hole is a gaping one even if they don't appear shell shocked.
I'm so sorry you have such a date to mark for A at all.
What a beautiful way to honor A...the dinner looks so impressive. I love your writing.
Wow, Julia... You had a lot gathering up in there during your silence. Thank you for it all. And for that incredible photo of the brownie, which made my mouth water.
I go back and forth on the allergy and accomodation issue. Having a child with health limitations myself I have never felt it appropriate to ask other people to limit themselves or their children in any way to accomodate my child. In the same vein we do not ask the school to rearrange the schedule or activites planned because my child may not be able to participate in them. I think it would be unfair to do so. We do everything we can to have him included in all things and at the times he can't be, he goes to the office and hangs out there. On a occassion a sympathetic and good buddy will go with him for company keeping.
With food allergies, given the wide variety and severity of them, I do believe it is the parents responsibility to have things at the ready for thier childs sensitivities and needs. I think it is great that you were willing to take the time and effort to create the meal that you did and it was a very generous offering, but I don't think it should be expected of everyone to do the same. One of my best friends son has a severe peanut allergy and her postion, which I admire and support is that she will never leave her sons life in the care of others who may or may not be as vigilent as she is when preparing food for him or cleaning surfaces etc. So when there is a party or gathering she is the one who is there, watching and serving him. It is what makes her feel safe. All of the parents are very aware of the allergy and we all do our best to avoid triggers but she doesn't want other kids to not have what they normally eat for lunch, (can we all say PB & J:)) because her son can't. He has a special place to sit and his peanut free friends can come and join him and the others eat away from him. It's a perfect compromise.
In the end I think we are all ultimately responsible for ourselves and our families health needs. It is a wonderful thing when those around us are supportive and sympathetic to those needs but it shouldn't be an imposition on them.
I still don't do the birthday thing. It just doesn't seem like a birthday to me. Anniversary doesn't cover it either, feels to celebratory. I can't find a word or a way for that matter, to mark those days. I guess it goes with the unavailability of a 'title' to go with our status as db moms. No widow(er), orphan, nothing...ugh.
I'm glad to read/hear your voice again and that you and Monkey did find a way to remember A. that felt right for you.
xxoo
What a gorgeous post. And as someone with food allergies and with children with food allergies, it makes a huge difference when someone considers it.
And beyond that (sorry for the additional comment, my hand slipped as I was scrolling down to read someone else's comment and it posted), my heart is with you remembering A.
There is no way I could cook that amount of food, allergies or no (but probably especially), on any day of the year. Maddy's days least of all. So bravo to you for honoring A in this magnificent way, and finding a source of inspiration out of the incredibly shitty silver lining.
And it looks delicious.
I'm not a party gal, on hers or (this year) mine. I'm also a lot more circumspect than I expected, but things come up. And I'm so glad I have this outlet to dump them in. I'm still feeling frozen. Our groundhog predicted six more weeks. That feels about right.
Julia, what a photo - and a thought! I had no doubt that something was unfurling, waiting, or considering under that snow and quiet.
k@lakly, I've been thinking a bit about your comment, and I'm going to try to shape a semi-coherent response. Apologies all 'round, folks, this might not be quite comment-length.
I have a few different approaches to your comment. The first is that I agree with you. It doesn't bother me at all that there are some things that the Eldest can't do. Life isn't fair, and it's not a bad lesson for him to learn. Kid's got a few diagnoses, and well, that's going to limit things, right? Fine.
On the other hand, it's tough for a kid to have too many doors closed to him. And at a certain point, that stops being a good lesson for him to learn, I think. But what kind of lesson it becomes, depends on a lot: who you are, who the kid is, how their friends handle their absence, how many times they can't go or can't do something. Once? twice? seven times? never? What then?
Food allergies vary so ridiculously that I couldn't begin to extrapolate a standard of behavior for them. A child with one allergy, or who isn't contact-sensitive, is in a very different boat from the contact-sensitive kid, or the airborne reacting kid. Or the multiple allergy kid. Imagine birthday parties for a child with multiple food allergies to oh, dairy, eggs, nuts, peanuts? wheat? Kids with a laundry list of allergies are often pretty sensitive to them, too. Which means a lot of staying home - and can mean, in a school like Monkey's (food! must! serve! food!) always staying home. That's a hard lesson to teach a child, and I'd say it's just - but only just - too hard.
I like your friend's response to her son's allergy, though, and I agree: the parent is ultimately responsible. It's our responsibility to communicate, confirm and triple-check that our child's medical needs are understood and can be met. Or, to recognize that they can't. Because that's how it goes sometimes.
Given her responsibility, it makes sense to have the allergy mom always stand guard - and it's a nice psychological break for her. She feels safer with that degree of control, and so do the other adults. But it limits her child, also, to have her there: she's responsible (not him?); he feels reliant on her/sees her presence as her expectation that he's supposed to be reliant on her; her presence is often read as a sign of his independance and developmental pace; etc. And let's face it: a pragmatic kid dealing with his challenges is a better PR image that the hovering allergy mom.
I think it's harder, but ultimately better to figure out where the allergy mom can *not* be present. It depends a lot on the diagnosis, the child and his(her) maturity levels, not to mention the developmental stage of the kids around them. The younger the child, the more an adult has to be on alert. But the older the child, the more they need to be learning self-management skills. Where we can let our kids stretch their wings, even make mistakes, I think we should. It's part of the parent's responsibility to figure out how to let the child learn which mistakes they can and cannot afford, as terrifying a thought as that can be.
(personally, I hate that part - but it might just be good for me, too. build character. or something.)
There is one wild card here, and that's the community.
I should start by saying that what Julia did is wildly, ridiculously unusual, and no. It's not a standard that I'd hold others to. But there's a very large value to meeting that standard from time to time.
If a community accommodates a child where it can, that sends a message that the child belongs. That the child's needs are acknowledged, and that frees the kid up to try advocating for himself, teaches the other children to be thoughtful of the needs of others, yadda yadda, good stuff. But hey, it's not always be practical to include the child, and that sucks. But the intent will get put into action where possible. Or it should.
And *that* is a lesson with enough balance to it, to my eye. And to see Julia teach it is a wonderful thing. For her to teach this lesson in A's name, on that day - oh, man, but that is humbling. And it sends me hunting for the kleenex.
because, cards on the table: I was one of the stomach bug people, and my kid was the one freaking out because not only *could* he go, but he could also eat. Anything. And so could his brother. It seems almost inappropriate that A's birthday is the cause. I almost don't want to have A mentally tagged with an event that has such selfish meaning for us. But still.
For a pair of brothers who can spend years not going to school events, parties, family events, hell - school, period - what Julia did in A's honor is immeasurable.
And it definitely puts a little kickass in the idea of a child's value. Which I definitely should have seen coming.... After all, this is Julia.
@k@lakly~ This might turn out to be a very long answer, though I will try to keep it as concise as I can. First, I need to say that everything that follows is taken in the context of a Jewish intentionally pluralistic day school. Judaism is a very communal religion. There are some prayers which traditionally are not said unless there is a quorum of at least ten qualifying individuals present. It is also a religion with a lot of food rules, a lot of food traditions, and a good bit of particular foods associated with calendar events/holidays. Some or all of what I am going to say below may not apply or may not apply as strongly in other contexts. (and I am going to number my points below to make sure I get to all of them and keep them straight for myself.)
1. As you rightfully point out, some allergies are more severe than others. But all kids need an education. So the kids with severe allergies can either go to a school or be homeschooled. But I think it's unfair to demand that they be homeschooled. So then it is responsibility of the parents to look for a school where the kid can be safe, but also hopefully not completely in a box, and it is responsibility of each school contacted in the process to consider whether they can accommodate the child, barest minimum at least, but hopefully in a more inclusive way.
2. Once a school makes a commitment to accept the kid (and in my mind this is a very important point, possibly the most important one), the kid is a member of the community. No more, but also no less. Let's be very clear what I am saying here-- the kid is not a charity case, not a pain in the ass, not a horror story. The kid is just a kid, and deserves all the dignity afforded to every other child in the community.
3. So before Monkey's school made the commitment to accept a kid with contact and other allergies, a complicated kid to be sure, but a complete delight to be around, before they made that commitment, it was their responsibility to sit down with the parents and go through all kinds of scenarios and figure out whether they could have the kid in the school. And I repeat-- that "could" must include whether they can have the kid in the school and offer him the level of dignity they offer every other child there (which is total). But once they work out all the details with the parents, and all are satisfied that the arrangement amounts to safety (or, rather, acceptable level of risk), then it is on the school to implement the policies religiously (pardon the pun).
4. And yes, some of these policies may be something that hasn't happened at the school before, like the wipes at the door of the classroom, or the school-provided in-classroom snack that all the kids get (to limit the risk of contaminating the classroom), or a list of acceptable in-school birthday treats. And others of these policies may amount to gentle but firm boundaries, like the allergy friendly lunch table (where the class' allergic kids and anyone who brought a compliant lunch and wishes to hang with the allergy kids sit) vs. other tables, so that Monkey can't have both her yogurt and her allergic friends to talk to at lunch, which is totally cool-- teaches responsibility and thinking ahead all around. All of these combined carry the message that every member of the community is important, and that as a community we are creative enough and caring enough to make this work.
5. And that is the message that the kids internalized very fast. There are plenty of foods that Monkey likes but can't share with her allergic friends. But she doesn't have to have those foods right.the.fuck.now. Between people and food she chooses people. And that's the way I like it to be. Unless the allergic kid is your sibling, there really is plenty of time when you can have whatever food you want, but there is only so much time you can spend with your friend.
6. The school is only responsible for the school hours thing, but then there are the playdates and the birthday parties, and school community events, some narrower and some wider than others. Playdates and birthday parties are on individual families to figure out, and on the parents of the allergic kids to evaluate as to whether the risk is acceptable or whether they need to explain to the kid why it's not safe enough to go. School community events are a whole other kettle of fish... They are somewhat connected to the school, but they are run by parents, not school officials. So it follows that their policies may not (yet?) match the school's. But because it is a Jewish school, and a pluralistic one, the attitude going in should be very much the same. We should, as a matter of who we are, consider every member of the community valid. We should be troubled if our events by virtue of design of their food portion exclude any number of members of our community. So yes, not all events can be easily (or at all) accommodating of food allergies, but that doesn't mean we don't have to try. As the rabbis say, "It is not your duty to complete the task, but neither are you free to desist from it."
7. I feel that I should also point out that the parents in question never demand anything of any event outside of school hours. They advocate and they offer to work with the powers that be to make events more accessible to the kids, but they do not demand. And in the end, if something is not safe, they just don't show up.
8. Doesn't mean I don't think we as a community could do better. And that is why I volunteered-- to show by example that we can have a tasty meal that is safe for everyone, and that it doesn't have to break either the bank or one's back to make it happen. And that is all I can hope for in terms of a long-term impact-- more thoughtful engagement from other parents. And maybe more playdates for the allergic kids...
I feel like I might be missing some part of my argument. But I am also falling asleep as I type... so hopefully I was coherent enough above to make my point.
I'm very impressed that you made lunch for so many people, in these special days. And considering all the allergies. Wow.
Thinking of you and A.
Wow.
we have not run into the food allergies, which surprises me. We are, however, vegetarians, and I am always grateful when those preferences are met. And I am also sure to tell the person I need to tell that I am grateful.
Five years later (soon to be six) and I have yet to use the word Birthday. You're way ahead of me there. I still call it an anniversary, occasionally the day of his delivery. I'm not really surprised when people don't remember anymore. Although my parents apologized for missing it last year. Which was sweet of them. I just want DearDR & I to remember; anyone else extending their thoughts is gravy.
Also, welcome back. I missed you. A's birthday is the same as mine. So now you will have someone else to remember!
ciao,
rpm
Wow, that's an impressive looking feast! Bravo to you Julia!
very impressive, julia! and a lovely way to honor A.
I am so glad that you had the courage to speak to friends who hurt you, and even gladder they made amends.
I feel that so often people are so passive-aggressive and given to sulking. It takes a special kind of grace and maturity to be honest about hurt feelings. I really admire that.
Well done Julia. I am just blown away.
I think Julia's response above is fantastic and I'll add something: I think it's important lesson to teach kids that there are ways to do things so all can be included. For instance, I'm a vegetarian, and when someone chooses to serve a veggie meal instead of a meat meal, I get to eat as does everyone else. But when they serve a meat meal, I can't participate. I think it helps kids learn problem-solving where they stop doing what they are naturally inclined to do and start thinking about a different approach--one that is more inclusive.
I definitely think it needs to be a balance where the child/family has a responsibility to their own health and others cannot operate solely around them, but there is also a responsibility on behalf of the community to include that person--especially when all can participate by doing things that help the sole member of the community.
I think of it in the same way as ramps. All can get up ramps, but not all can get up steps. And therefore, if ramps exist and they CAN be used (structurally, space wise, etc), why not?
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