I sometimes go for months (okay, maybe weeks) without thinking much at all about Kaspar's food allergies. Considering that we spent his entire babyhood desperately trying to decipher his situation, and sufferings its affects, this is saying a lot. Although we did decipher his situation to the extent possible -- and we've made incredible progress in addressing it, and easing his symptoms so we all suffer less -- our lives are still very much affected by his allergies; Kaspar's diet remains quite limited, by any normal person's standards (no wheat, gluten, eggs, soy, nuts, sesame, annatto, etc. etc.), and the possibility that one of these items might somehow make its way into him remains a looming threat. I make all of Kaspar's food at home, and he brings his own food everywhere he goes. And we work hard to ensure this never means he's left behind. He can go to school, and we can travel together as a family. (Cooking can be a challenge, in transit, but we improvise.) As for Kaspar's school, his teachers are up to speed, equipped with Epi pens, and part of our team. In the event of an emergency, everyone knows what to do. And everyone in Kaspar's life is working to prevent any such emergency from happening. This is threat management: doing what it takes to keep the little dude safe, and rockin' it so life is fun, instead of scary. Life is supposed to be fun. 

Still, the world is full of wild cards, and while I try to focus (in everyday life, and on this blog) on the victories, with threat management comes some fear, and tough, personal mommy stuff. I think there's probably value in writing about that, too. Full disclosure and all. When we travel, for example, we encounter cooperative airlines -- and passengers -- and... uncooperative airlines... and passengers. Kaspar does not, as of yet, react to nuts in his proximity (as opposed to ingesting them, which would definitely elicit a life-threatening reaction), but we don't want to put this to the test while hurtling through the air at however many hundreds of miles per hour, however many hundreds of feet above the ground. So I always let the airlines know we have a child with a nut (all nuts) allergy before we fly. Delta goes so far as to refrain from serving nuts on their flights, and even to ask -- over the loudspeaker -- that passengers don't eat any nut snacks they may have carried aboard. Other airlines (American Airlines) simply shrug, and tell us we're on our own. I then have to tell the people around us -- right in front of Kaspar, of course -- that my son has a life-threatening nut allergy, and ask that they don't eat any nuts during the flight. Do some of these people resent that I'm 'telling them what to do'? Yes. Do some people whine about it? Yes. Do I care? I care that Kaspar has to overhear all of this, but... I don't care enough not to ask, because I care more (more than I do about my own self-image, inconveniencing others in a minor way, and more, even, than repeating something kind of scary in front of my son) about keeping him safe. And, on the upside, I guess it's good for him to watch and learn, so he can keep himself safe, too. I try to model my tone, my approach -- everything -- in a way that will serve him when he takes all of this on, himself. (In fact, he did hold his hand up to deflect the offer of a graham cracker from a buddy the other day, saying, "I can't eat that. Thank you, though." It filled me with hope.) Deep down, I hope and hope and hope he won't have to take it on. I hope these allergies will all go away. And I focus on the victories.

This has been on my mind this week because we've been dealt a hand of wild cards right at home in recent days, too. It's been a tough reminder that... others aren't always as careful as we are. That this fear I feel is real and that the threat is, too. The first situation, if you will, occurred after a Buddhist discussion meeting that I offered our living room up for. We have a nice space for these types of things in our living room, and, if they happen there, I can definitely attend, and so can Kaspar (I let him stay up past his bedtime for these things. They're fun). Someone left a jacket behind after the last meeting, however, and it sat around our house for a few days before landing in our laundry pile. I emptied its pockets -- as I do all pockets -- before putting it in the washer, only to discover loose walnuts in them. I then discovered several on our living room rug. Walnuts, again, are a serious danger for Kaspar. I don't think he'd eat one if he found it, but who knows? And I don't want him picking one up and then touching his mouth... you get the idea. I know everyone in attendance has been told about the allergy sitch and asked not to bring any nuts into our home. I'm sure this was an unintentional slip-up, but that doesn't change the fact that it put our kid in harm's way. 

Likewise, a very close friend came over for a playdate a couple of days ago, and pulled out a peanut butter snack for her daughter mid-way through. She paused and said she'd thought about it but decided since only her daughter would eat the snack, it should be okay, right? I hesitated, and confessed that we do indeed, occasionally, eat nuts in our home ('we' being Aaron and me), but we are super crazy careful about washing our hands immediately afterward. Peanut butter is sticky, and kids are messy people.... I wasn't feeling very okay about peanut butter snacks on the loose, but her daughter had already seen the thing. I asked that my friend wash her daughter's hands after eating, and said I'd also wipe the area down when she was finished. (Then did.) My friend watched her daughter closely, and washed her hands as I'd requested. She's a really, really good friend, and I know she meant no harm. But, she said she'd thought about it. Why did that snack make the cut? It shouldn't have. I didn't want to make my friend uncomfortable, or emphasize -- again, in front of Kaspar -- that an innocent-looking snack another child was chowing down on could actually kill him, so I left it at risk-management. But part of me felt... unnerved. I know this is not second nature for most people, but we rely on others to take care, around Kaspar, to ensure his safety. Every time someone doesn't, I get an awful feeling. 

The third incident happened yesterday. Another good friend, whose child also has food allergies, was making a snack for Kaspar's class, and thoughtfully asked if Kaspar would be able to partake. (He brings his own snack, otherwise.) She was making wheat and gluten-free pumpkin muffins. "But they have almond milk in them," she added. I said nope, almonds are nuts, and Kaspar's allergic, but thank you for thinking of him. Thing is, Kaspar's classroom is nut free. I waited a long time, and debated whether it was appropriate, before asking that they take this measure (another local Montessori school is entirely nut-free, school-wide, which I think is brilliant), and they were happy to comply when I did ask. It just limits the likelihood of a 9-1-1 call, which is in everyone's best interest. But a parent who knows this, and who has a kid with food allergies herself, planned to put almond milk in a snack. I don't know how much of a risk this would pose to Kas if he didn't eat the muffins, but I didn't really want to find out via a wayward crumb, or whatever. Since I know the mom, I called her later and explained, and she was totally understanding. She had coconut milk on hand and made the muffins with that. And I told Kaspar's teacher today, in brief, about the mix-up, and asked her to emphasize when explaining the nut-free thing to new parents in the class that this includes nut milks and butters. Kaspar's teacher understood, as well, and all of these situations resolved without incident, but... three in one week was just... a lot. A lot of reminders.

I don't want to be overprotective; it's not in my nature, as a person or a parent. I remember handing a pretzel to a puppy-eyed kid at a party once -- before I had a kid of my own -- and, when his mom sprinted across the room and pried it from his mouth, I totally judged her. "Parents these days." Now I'm that mom, and I get it. I so, so get it. My dad, within ten minutes of being in the same room as Kaspar last summer, handed him a "nut crisp" chip. Granted, my dad has dementia, but he's in the early stages and had just been told not to feed Kaspar anything. It was, again, a reminder. We -- Aaron and me -- are responsible for risk-management, and that means riding the shit out of our message sometimes. That means being diligent and, sometimes, being annoying to people. During that same visit, my mom was offended when I asked her, every time she left the house with Kaspar (she was awesomely on board for kiddo watch, which allowed me to get some work done... I love my mom), if she had the Epi pens. What she may not know is that most -- by far--  of kids' allergic reactions, to known allergens, occur when the children are with secondary caregivers. Grandparents definitely included. Double-checking with my mom wasn't a personal affront. It was a vocalization of what I do in my head, now as a habit, before I leave the house with Kaspar myself. Do I have the Epi pens? Check? Good to go. Let's never have to use them again. Not assuming someone else has that habit in place means a bad situation won't turn rapidly worse if we do. This is my job. 

Besides the reminders, I've also been thinking about this because we are moving seriously in the direction of bringing another baby into our family. I've been bouncing back and forth (not as decided as I thought) between adoption and pregnancy like a ping pong ball on lady hormones. Aaron respects that we're talking about my body as far as pregnancy is concerned, and he knows I'm pretty traumatized by Kaspar's first year (plus), so he's really open to either option and has left it up to me. He prefers pregnancy, though. Adoption takes a while -- years, sometimes -- and is pretty (very) expensive, but we're starting the process, to account for the taking a while part. We're getting in touch with some agencies, filling out forms and seeing where the path leads. Getting the ball rolling. But I'm also feeling more open to another pregnancy. There's definitely a higher likelihood of allergies for kid #2, since Kaspar has so many. But, there are also lots of families with only one food-allergic kid, out of two or three or four. I would avoid certain foods during pregnancy and while breastfeeding, to try and tip the scales in our favor. And if our second child had eczema, reflux, and allergic reactions like baby-Kaspar did, we'd know what to do. We've done it before. We're doing it. It would be a bummer, but it wouldn't be a crisis, as it was the first time around. 

When I think about certain parts of Kaspar's babyhood -- swollen faces, vomit, begging for answers from our pediatrician and being told he was probably fine, peeling his hands from his skin as he clamored to scratch (and scratch and scratch), I get short of breath, even now. I want to go back and help my baby. The thought of being there again with another terrifies me, and that made me feel certain I couldn't take the risk. But I've researched, and reached out to other moms who have kids with multiple, severe food allergies, and I've been encouraged. Many siblings -- most siblings -- of those kids don't have them. And while I've wondered if even considering another child is irresponsible to this first, who needs me to be vigilant and to manage the risks, these moms are clearly very much 'there' for their children, and they've given me confidence. They've also provided another kind of reminder: although everyone is different, we are not the only parents who've lived through the kind of babyhood Kaspar had, and who continue to manage the risks, to approach strangers on airplanes and ask them not to eat their snacks. We are not the only parents who've felt this particular brand of fear when others don't care, or don't remember, to be careful. And these other parents, these other families, are also living well (nod to Heidi from Living Well With Food Allergies -- thank you, so much, for your email). As far as adoption versus pregnancy goes, we're going to start the adoption process, and, if a child hasn't been matched with us by next fall (when I'm going to opt in to health insurance through my work), I'll go ahead and get my IUD removed, and we'll let destiny decide. We definitely won't leave a baby hanging if we get matched up, or knocked up, along the way. Either way, I know our family will grow however it should, and that we will be exactly the parents our next child needs, just as we have been -- and are -- for Kaspar. (When we first found out about his countless allergies, landed in the ER, and hit the bottom of what would be a steep learning curve, friends told me how lucky he is to have me as a mom. I felt I was failing him and didn't believe them. I cried, "I don't want this problem. I don't want us to have this problem." Now, these days, I understand and believe what they said.)

The fear of losing one's child is something all parents, I'm guessing, face on at least an abstract level. For me, the ease with which something very bad could happen has been the hardest part of this whole thing. Harder than the eczema, harder than the sleep deprivation. I don't want to walk around afraid the piano will fall. That's not how I want to live. That it could fall,at the drop of a peanut (or an egg, or some bread...), threw me for a loop, for a while. But all of us are susceptible to things that could happen. And sometimes, things do. Some parents have faced the possibility of losing their children even more intimately than I have; I know a mom whose son survived cancer, at four. (Not surprisingly, she's one of the coolest, most 'aware' people I've met.) Many mothers in war-torn, or poverty-stricken countries are powerless to protect their children from violence, disease, hunger. Our world is messy. Motherhood is messy. It is filled with beauty but its depths of love are endless, and we are, consequently, vulnerable, right along with -- and in direct proportion to -- our children. All people are vulnerable, but all people are also strong. We have endless depths of strength, too: this is our birthright. As Aaron reminds me when I worry Kaspar will feel isolated, or fret about the threats, "Everyone has something." This is our something. This is real life. And I accept it. I -- we -- will continue rocking it, and having fun. Risks, reminders, wild cards and all. 
Picture
I love you, little boy, with my entire being.
 


Brooke
11/15/2012 18:55

Made me understand the reality of the seemingly benign everyday dangers faced by those with life-threatening allergies even more. And made me cry. You're a great mother.

Reply
11/21/2012 13:14

Thank you Brooke -- I really take that to heart. I'm glad this piece touched you; thank you for reading. xo

Reply
11/15/2012 19:28

I think all people (me, at least) need to read more (beautifully written) pieces like this. So often the conversation can be hostile. This is life or death, so a certain adamancy things be a particular way isn't out of place - but when other's read that as hostility or distain (for people who don't seem to take it seriously enough) both sides just get angrier. I love how much grace you had for people who were kind of being idiots (bringing a peanut snack? really?) So often, there's no understanding or grace to be found (which I get, again, given this is life or death, but that makes the fact you had it all the more lovely).

Reply
11/15/2012 19:30

Aaaaand, I just can't let it go I typed other's when I meant others. I'm obviously making it worse by bringing attention to it. But I can't stop. I have to let you know I noticed.

Reply
11/21/2012 13:20

HA. I am exactly the same way. Cannot let that kind of thing go when I do it. (Didn't even notice it in your comment, though!)

11/21/2012 13:19

Thanks so much Jesabes! Yes, it's a very charged topic. I was amazed at the range of responses when I wrote about Kaspar's classroom going nut-free, on Parenting.com. Some parents say "Oh of course we'd make that effort in order to keep another child safe!" and some people are aghast that anyone would ever ask it. Most parents, however, who don't deal with food allergies, either don't know how serious it is (like they imagine sneezing fits, not asphyxiation), or just are completely unused to even thinking about food and other kids in terms of it being a potential safety issue (like when I handed that kid a pretzel way back when). I am fascinated by food and its politics -- people take their food choices, whether healthful or unhealthful, seriously and personally -- but Kaspar's food allergy situation is a whole new ball game. I think we've finally got the hang of it though! Now if we can only get the message across to our guests that our home is not a nut-friendly zone. (Maybe a sign on the door as a reminder?)

Reply



Leave a Reply.