I get a knot in the pit of my stomach every time I see a Facebook picture of someone’s child enjoying ice cream (most often seen on a trip to a fun ice cream shop place.) I usually run through a movie-like-list of un-lived childhood memories we won’t experience. I tell myself we can buy safe "ice cream" at the grocery store, try to say that’s every bit as good, but fight that a bit. Remind myself that Jasmine hates cold foods. Think about how Ruby would LOVE a good ice cream party. And then shake my head and put on the mental breaks and try to change the subject. It usually takes a few more minutes. I usually end by agreeing it is nice that we have ice cream options and trying to be happy for other people to get to go to ice cream shops. But sometimes I’m just sad-mad. Other times I’m ok.
Anytime we leave the house I have to consider the time of day, because if they will get hungry I MUST bring food along, or count on just getting a fast food plain hamburger meat patty because everything else has allergens. (Well, maybe there are a couple more options, but they don’t like lots of foods on top of it.)
When we play at friends house, I pack food.
When we are invited to dinner at someone’s house I pack food.
If we have a birthday party to go to, I need to make safe cupcakes to bring with us.
Social events center around food, or include food 99% of the time. I have to weigh out which ones are worth the trouble: which ones pose the heighest level of un-safeness, and which ones are just too food-centric, or which ones we could make work.
When we go to other people’s house, I often just give Jasmine a preemptive dose of allergy medicine just incase they have pets, or their house somehow makes her react.
I bring our nebulizer along with us if we are gonna stay at a location more than a couple hours.
I always have our inhaler, epi-pens, benadryl chewables, and hydrocortisone cream in our diaper bag. Making sure I have all those things adds on average 3 mins to every leaving-the-house-session. Much longer if I misplaced one.
I have random mental streams of panic while innocently looking out the window: I watched a squirrel. Oh so cute. Look at the cute squirrel carrying an acorn, aww isn’t that just so freaking cute. Wait….Acorn!! Wait...!?! Are those nuts? They look like a nut!! They come from a tree! We are allergic to tree nuts!!! Holy Cow, I’m gonna have to cut down that tree! I WILL cut down that tree! My yard IS going to be safe! Enter a morning spent online searching for answers. (As far as I can tell, the internet tells me this: “tree nut allergic persons should be safe to touch acorns, but they shouldn’t try and eat them, not that hardly anyone actually eats acorns other than some American Indians. But I should be aware and always talk to any teachers about art projects or teaching lessons with props because often allergens are used. And we need to discuss the use of acorns, pine cones, and the like, and have a plan of action ready.”)
I have to have very stern and serious talks about NOT putting things they find outside in their mouths. Jasmine loves to feel textures on her lips, and I have had to talk to her numerous times about keeping seed pods off her mouth -- just in case.
I have to read ingredients on skin products. Lots of “healthy” all natural body products are very unsafe for us. I will always be haunted by the fact that we had a milk bath powder (It may have been Burt’s Bees or a brand like that) inside one of our baby shower gifts and for some reason I just never used it -- I am SO SO glad! (We didn’t know Jasmine was allergic to milk until she was just over a year old…but had we used that milk bath I can’t imagine what her body would have looked like. I know God lead me through a lot of her first year by prompting me to avoid certain things for seemingly no reason.)
I get some pretty heavy mom guilt when I eat milk products or other allergens when I’m out on my own. I get sad when I think about what they are missing. I have to keep telling myself it is ok that I’m eating it, and I’m not betraying them in some way.
I’m getting a lot better now, but I used to spend TONS of time thinking about how it’s my fault they have food allergies. The fact that Ruby (my VBAC baby) also has dairy and other allergies has cured me of a lot of c-section guilt --- there are plenty of articles out there that say or imply having a c-section gives the baby asthma and allergies (amongst other things). So as much as I wish neither of my child had any issues ever, I have gained a lot of peace by seeing that my so, so, so much more natural pregnancy and birth of my second didn’t really change anything. It helped me see some things just aren’t up to me.
When I shop for sweaters I read the label thinking of them. I avoid wool -- not sure if that matters, but I worry if they sit snuggling me it could make them itchy. I know I feel itchy when I wear wool -- so I don’t even want wool sweaters. But I also avoid Angora like the plague -- that I’m fairly certain would be a disaster. And I can skip the cashmere envy too. It all works out -- the only real sweaters I like (regardless of allergies) are 100% cotton anyway. I just wish they were easier to come by.
I have these romantic visions of me and my preteen/teenage daughters baking and cooking these really cool meals that are awesome and safe and just so “normal” for us but aren’t “normal” at all for anyone else, but us being happy and warm and cozy in this hazy pretend world, maybe its Christmas time, or Thanksgiving. Then shortly after that I get in the kitchen with my preschooler and toddler whining about not wanting to eat any of the food I have here, and I feel like I have NO idea what they can eat. And I get sad. But I still visit my happy pretend future world and hope someday that it’s sort of a little bit real.
I think about which jobs my girls can’t take when they get older. They can’t work at a normal bakery or restaurant. Sometimes I pretend they open an allergy bakery, but of course think maybe that would not appeal to them, and I’m realistic about how challenging that would be. It’s something I think about to distract me from disappointment and point myself towards hope.
I have pretty much ruled out traveling out of the country with them. Last year Blake went to China for work, and I realized that had it even been an option for us all to go with him, there would be no way for me to keep the girls safe there. I try to tell myself that when they grow up, if they really wanted to they could make it work, but I am fully aware that it would be an enormous challenge, for which they would need to learn a new language very, very well.
The idea of a vacation (even in the US) is a bit overwhelming to think of food safety. It’s likely to always be a vacation to a place where we can cook all our own food.
When they get a couple hives when we are at a public place (library, mall, etc) I apply hydrocortisone and watch them like crazy, optimistically thinking it was most likely some messy fingers that had cheese on them, which got invisible cheese goo on the toys. But I also hold my breathe while the hives go down, making sure it’s not a bigger deal than that.
I have to be the wash-everything-before-you-wear-it mom. Not just when they are babies. Unwashed stuff has given them some crazy bad rashes.
I get to fall into the helicopter-mom territory, without my consent. So, I have to say, the only thing to do is not care if other people judge me for that because I am doing just as much as I need to, not more, and I don’t need everyone to understand that.
I don’t know how to ask kids that aren’t my own to wash their hands before they touch my kids. I asked a sweet little girl at church if she could wash her hands (which had cheeto-cheese clearly visible on them) before she played tag with my girls and we both ended up crying.
I don’t know what the right answers are when people ask me the ways to keep my kids safe -- like at church. It’s a pretty tall order to ask everyone to wash their hands everytime they come into the kid area. I’m a realist -- I know that’s not gonna happen. I get a deer in the headlights face everytime I get asked how they can help. I don’t know.
I battle the idea of forcing a hermit lifestyle on my children. I know that’s a bad idea, but man oh man does it sound nice and safe.
I wonder how to involve my girls in the kitchen at a young age, since most our food prep is handling raw meat or chopping veggies. There is very little measuring. Very little scooping. I feel they may just have to wait a bit.
I ignore any and all Pinterest toddler food lists -- they are full of cheese cubes, yogurt and cheerios.
I unfollow every Pinterest food board outside of a select few that sometimes have a couple helpful things for us -- but even those are very often useless for me.
I sometimes marvel at the fact that my kids don’t know what certain foods even taste like, and I get kinda happy for them realizing that they don’t even know how to crave a doughnut.
I often get to be impressed with their resilience. When we took gluten out, I talked to Jasmine about it for a couple weeks before hand, I prepared her to give up a couple of her favorite foods. She was sad the first time I talked about it. And then when it came time to do it, she handled it with more grace and dignity than I thought humanly possible, and hasn’t mentioned those foods since.
I watch other kids throw fits in the grocery store line asking for candy and I have mixed emotions. I feel sad that my kids can’t eat those foods, yet know they surely don’t need to eat them, wonder if my kids will ever throw a fit because they can’t eat those foods. But I also feel glad that so far my kids have only ever asked for candy in the check out line once, and once they heard they weren’t safe for their tummies they haven’t asked again.
Halloween was something I had no idea how to handle. But last year I explained to Jasmine that we couldn’t eat all the candy, just the safe candy and at first she cried. I asked her if she wanted to trick or treat or id she’d rather have a party at home. She decided to trick or treat. And then she handled the candy sorting without any sadness. (Impressed yet again.)
At holidays I often feel like a major party pooper and a food nazi -- I feel gulity for it, and sometimes wonder if everyone would rather us have our own Holiday at home so they could eat what they want and not have to make special considerations.
I get so mind boggled by sorting through all the “what you should do” food theories. I don’t get the luxury of opting into my choice of “food club” where I sign up for deep food beliefs and link them on facebook. I just get to sort through (way too many) recipes to see if they will hurt my kids in the immediate here and now, in a very real and apparent way -- not in a deep beneath the skin in many years kinds of ways. But that doesn’t mean I don’t care about their deep below the skin and years ahead. But I can’t do what all the different “theys” say to do to be healthy. Because for my girls it’s not healthy. Obviously yes, veggies and fruit are clear winners -- so no question there, outside avoiding the allergy ones. But overall I have to strike my own balance on everything else -- no backup, no clubs, no theories, no family traditions to lean on or gain confidence from. (Yes there are allergy “clubs” but people with allergies don’t all have the same allergies, so that only goes so far in terms of helpful recipes. And to be honest, I don’t enjoy spending much time on the actual, non-recipe, allergy websites/forums as they scare me too deeply.) So when I choose to let my kids trick or treat I fight the links permanently etched into my head preaching that sugar will be the death of us all (as if we won’t all die some day) -- and I have to take the weight of that and balance it against the idea of my kids having a childhood in the midst of giving up so many other things, decide what I think is best in terms of a balanced life. But I have to take the weight of it. I don’t have back up. I just have lists and lists and lists of links showing me how I am feeding my kids wrong. It’s awesome. No. No its not. Not at all.
I have to convince people to believe me. I don’t get the luxury of trusting people (family members included) around my kids. They have to prove the understand food well enough before I feel ok being out of the vancity of my kids around them. Or at least prove they respect the situation enough to not give food to/have unsafe food laying around my kids. It took years before I got some very close people to believe that “a little bit of milk” was too much milk.
Before our families were totally on board (and before I even really knew what I was dealing with fully in terms of the allergies) I did not feel safe to sleep in at our families houses for fear my daughter would get fed an unsafe breakfast while I was asleep. I usually got terrible sleep out of town -- my kids didn’t sleep well away from home, and I didn’t feel ok leaving them out of my sight. This aspect is getting much better as my kids grow and Jasmine is becoming more and more aware of what she can eat and explain herself. Also our friends and families have started to understand our plight more and more.
I’ve really struggled with the idea of a babysitter and the idea of them keeping my kids safe, and the reality that they may need to use an epipen (unlikely, since our house is allergen free-- but they need to be willing and able to hold my kids down, stab them with a needle (an easy to use one, but a needle nonetheless), keep it in them for 10 seconds, and call 911 and then me -- just in case they need to!)
When we watch TV shows or movies and characters are eating foods we can’t I always cringe internally, debating if I should say anything or not. The balance I have struck is to usually say nothing, but on occasion ask the girls if they can eat that food or not. And whey they say no, we talk about the safe foods we can eat.
I feel VERY, VERY strange having play food in our play kitchen that is not safe food. I kind of want to throw it away. But I’m not sure that’s the right attitude.
I get to maneuver the conversation, “Mom, if God heals me of my allergies can we get a dog?”
So like I said, I just felt like writing down some thoughts (there are more) I have as a mom of little ones who have food allergies.
I’m not having a pity party. I’m not fishing for attention. Just feeling like being open and honest.
