EDIT: This post was originally written and published in summer 2016, but I’m updating for Food Allergy Awareness Week, May 2018.
On being a mom…
Being a mom comes with great love and adoration, immense joy, rewarding moments, sloppy kisses and hugs around the neck..
It also comes with hard days, exhaustion, great sacrifices, worry, anxiety and stress.
I think worry is all part of the process. You’re given this tiny being to love and care for. Random things we take for granted become scary and dangerous like flights of stairs and large bodies of water, rocky asphalt and electrical outlets.
Ice cream and grilled cheese…hamburgers with sesame seed buns and mustard…peanut butter and jelly sandwiches…
Wait, what?! You’re probably thinking “These aren’t dangerous, they’re a rite of passage in childhood!”
Except for us, they’re deadly.
On being a food allergy mom…
I have two young children…Sweet Lark, shy and timid but smarter than a whip. At 2.5 years old, she continues to amaze me with her small-but-mighty attitude and independent personality. And then there’s Arlo, who used to have the nickname “Angry Arlo,” until we sort or figured him out and he became the sweetest, snuggliest baby with an obsession with any ball he can throw and roll and veracity for clapping at the most mundane of events, like upon waking up on a Monday morning. They both have multiple, severe and life-threatening food allergies. You’ve heard me discuss it before, but I don’t think I’ve truly given an accurate depiction of our daily lives.
Lark is allergic to dairy, eggs, several nuts, sesame and mustard, in addition to eczema and severe asthma. Arlo is allergic to dairy and soy so far and also has eczema, but is showing no signs of asthma at this point, thankfully!
I can’t speak on behalf of everyone, but having a child with food allergies goes something like this:
- It’s spending what seems like hours grocery shopping because time is spent reading labels and deciphering what the ingredients REALLY are when they use vague terms like “natural flavors”
- It’s giving up on most products in the supermarket based on said ingredients.
- It’s resorting to mostly fresh fruits and veggies, which is much healthier anyway, but not so easy on the pocket book
- It’s preparing fresh meals for any and every outing
- It’s always depending on ice packs or hope that there’s a refrigerator at final destinations to keep the food fresh
- It’s packing fresh, non-dairy milk alternatives . It’s $40 a week (or more) JUST for Arlo’s milk. Add that to Lark’s milk alternative, all before typical grocery bills, gas money, diapers, etc.
- It’s researching destinations beforehand for trips. And I’m not talking about places to see or locations to shop for souvenirs. I’m talking routes to natural foods stores, calling hotels to see if they offer in-room refrigerators, being passed from person to person at TSA call centers to find out the protocol for taking fresh liquids on airplanes, researching airports to find suitable snack options since traveling with large amounts of fresh food is not always an option
- It’s preparing ALL meals for both children to take to their childcare provider, even though the childcare provider participates in your state’s food program, which reimburses said childcare provider for food expenses yet doesn’t allow your child’s special dietary needs to be “allotted for” because they aren’t allowed on the food program.
- It’s signing waivers for said food program, but not receiving any benefit for “opting out” and still paying the same amount for childcare even though you provide 100% of their food and drinks.
- It’s wishing and wishing, then wishing again, that you could be a stay-at-home mom and take care of your kids, out of harm’s way (mostly) but knowing you couldn’t afford it and that your employer’s health insurance offering is not something you can sacrifice
- It’s sending oreos to daycare so your child has a cookie to decorate for holiday activities
- It’s searching for, and spending too much money on, craft easter eggs just so your child can have the experience of dying eggs with their cousins
- It’s avoiding cute clothes with things like ice cream cones and donuts, because you feel guilty that your child can’t actually eat them so you won’t dress them in offending foods either
- It’s trying to manage anaphylactic shock in the middle of target while strangers just pass by, offering nothing more than dirty looks as your child projectile vomits everywhere and swells to unrecognizable proportions
- it’s learning that anaphylactic shock can last hours, or even days because of biphasic reactions that happen and re-happen later
- it’s learning that anaphylactic vomit can aspirated into your child’s lungs and become pneumonia, warranting yet another hospital visit
- It’s wiping down restaurant high chairs and tables because they can cause severe reactions from not being properly cleaned after previous uses
- It’s always keeping one hand clean during meals. As in, not touching anything with one hand, except for your allergic child and your allergic child’s food, to prevent cross-contamination and have a clean hand for emergencies…
- It’s giving up your favorite restaurants
- It’s ordering appetizers and having your child lay her head on the table in sadness because she can’t share it, which turns into either not ordering extra things at restuarants or offering plain dill pickles as their appetizer (with a side of guilt) as you enjoy yours
- It’s several allergist visits with extensive testing and monitoring, not always covered by insurance
- It’s being told your son can only tolerate a prescription level formula NOT covered by insurance and $60-$80 a can (which is why both of my kids started drinking milk alternatives at a young age)
- It’s medication after medication pumped into your child’s body, multiple times a day, just to keep symptoms at bay and knowing such medication can affect their health in other ways
- it’s medication that is suppose to help your child, but instead sends them to the ER via ambulance because it nearly causes them to stop breathing
- It’s knowing that ordering even a plain steak and steamed veggies at a restaurant as an attempt to make your child feel normal in the presence of others when dining out is a life or death risk due to cross-contamination
- It’s worrying the common cold is going to put your child in the hospital AGAIN, because viruses are the number one trigger for children with asthma (or your standard Hand, Foot & Mouth disease, which also put our daughter in the hospital)
- It’s spending many nights in the hospital, on different occasions, getting no sleep because the beds and pillows suck and you’re constantly being woken up by heart and oxygen monitors going off when your child’s levels plummet, scaring you half to death
- It’s spending nights in hospital while also on bed rest during pregnancy and trying to entertain a hyper toddler with too many steroids in her system
- It’s having a child who’s had too many rounds of steroids that doctors are concerned about the long term side affects, but have to prescribe it anyway because they could save her life
- It’s not trusting anyone to care for your children without having you in attendance, because so many people are uneducated about allergies and it’s a constant lesson on repeat of us telling people “don’t feed them ANYTHING!”
- It’s going to parties or family functions and never being able to fully enjoy yourself because you have to be constantly aware of people and surroundings and locations of offending foods. People REALLY like to offer treats to cute kids
- It’s washing your hands 1,629 times a day because even touching offending substances causes reactions to your kids
- It’s enjoying your morning cup of coffee and kissing your baby after, only to cause a hives breakout and swelling from your coffee creamer and learning that sometimes you just can’t kiss your children
- It’s buying expensive soaps and creams to keep their skin under control, only to have the summer heat come in and reverse everything you’ve done
- It’s watching your child miss out on things like pizza and ice cream parties and knowing that it will only get harder when they get older
- It’s going without ice cream yourself in an attempt to keep your child from feeling alone
- It’s constantly teaching everyone to not feed your child day after day, only to birth another child with DIFFERENT allergies and teaching your older allergic child to not feed the baby day after day
- It’s random rashes for no reason
- It’s staying away from swimming pools because of reactions to chlorine
- It’s constant research, asking questions and talking to nurses at the doctor’s office who know you and your kids solely by first name because you’re there so often. We get the fast transfer to a nurse as soon I mention I’m Lark or Arlo’s mom
- It’s full off accidents. Even we, as parents, make mistakes and miss an ingredient on a label or cross-contaminate something
- It’s the guilt of hurting your child
- It’s the guilt of knowing they got these genes from you
- It’s missing work and losing pay for doctor visits, hospital stays and sick kids
- It’s watching your child struggle to breathe or watch their tiny body break out in a vicious rash
- It’s standing outside a hospital room, listening to your baby scream as nurses insert IV’s
- It’s holding your baby as they nurses draw blood through tears and whimpers as you try to calmly try to reassure them that it’s all going to be ok
- It’s too many x-rays, subjecting your young child to radiation that they shouldn’t even experience at such a young age
- It’s breast feeding successfully for 14 months because you altered your own diet by avoiding your child’s allergens
- It’s giving up on breast feeding with your second child because it was the only option that didn’t require severely affecting your own health, even if you cried countless nights because you didn’t want to give up
- It’s listening to a society preaching that “breast is best” and that it’s the best way to prevent asthma and allergies in children, and laughing because it made no difference for your kids.
- It’s spending the first months of your child’s life listening to them cry out in pain and having doctors say there’s nothing wrong
- It’s being sad that your second child also developed allergies, but then realizing it’s blessing because your first child won’t be alone and that they’ll always have each other to lean on and be an advocate for
- It’s standing up to doctors and not giving up the fight
- It’s thinking you have it all under control only to have it all spin out of control again in a matter of minutes
- it’s feeling triumphant for making it to work for a full week because you’re constantly missing work due to all of the chaos
- it’s feeling triumphant that your boss hasn’t fired you yet
- it’s feeling discriminated against at times because your kids can’t help that their health sucks and you have to make decisions based solely on that fact
- It’s guilt, then more guilt…
- It’s knowing that when you’re child attends public school, they’ll likely be placed at an ‘allergy-friendly’ lunch table and could possibly mean they may eat alone and it kills your mama heart
- It’s the fear that mean kids will take advantage of your child and bully them, whether it’s words, or by causing harm to them with dangerous foods
- It’s expensive
- And it’s hard….
- It’s also knowing there’s hope that they’ll grow out of it
- It’s also hope for a world with more compassion, education and awareness
- It’s raising fighters
- It’s learning about courage and bravery through the eyes of tiny warriors
- It’s lessons in patience
- It’s education and teaching them how to handle difficult situations
- It’s finding your voice and being an advocate
- It’s healthy eating habits by default
- It’s expanding your cooking knowledge
- It’s realizing life is fragile and enjoying more of your moments
- It’s a collection of beautiful handmade gifts from angels at the hospital that your child adores and reminds them of overcoming obstacles
- It’s nurses and doctors who are patient and kind…so much so that your children love going to see them, even though you know as a mom that you’re there far too often
- It’s encountering kind people, like the man at the ice cream counter who went and got raspberry sorbet that was safe for my child out of a new and untainted carton with a clean utensil since they don’t use dedicated utensils for each ice cream, so your child could enjoy ice cream with the whole family during a summer sunset in the park
- It’s gummy bears instead of chocolate and the joy of finding alternatives your child can enjoy
- It’s the passion of protecting your child at all costs, despite the sacrifices
- It’s motherhood
- And it’s love…
One of my favorite quotes is this:
Be Kind; Everyone You Meet is Fighting a Hard Battle
This is one of our battles and I don’t wish for sympathy, I just wish for kindness and compassion. I also wish for awareness, which is why I share so much of our life with everyone. In hopes that someday people will think about allergies and asthma as more than just spring sneezing and more of a dangerous epidemic and health crisis that has no end in sight…and no cure…
These babies are precious to me, so I take it all without question and we soldier on…