Our Life is…

I’m writing because I know that food allergies can be a difficult subject to understand from the outside and that it can be a challenge to change your child’s diet, especially for reasons that have nothing to do with them personally. Here are a few things that I’d like you to know.

Most food allergy parents HATE to be a burden to others.

We hate that we have lists of places we cannot safely go or activities we have to say no to participating in. For Josie, this includes any home with free-roaming pets and anywhere she can encounter dairy, eggs, or nuts in the environment. An errant piece of shredded cheese that she finds and pops in her mouth can be the difference between life and death. We hate that we have to worry about what our children are eating AND what your children are eating, if they are in close proximity. We hate having to remind people to wash their hands after eating or before touching our children. We hate that people are forced to change their diets and behaviors to be around us. We don’t want to micromanage our OWN lives, much less yours! We want to shout, “I wasn’t always like this!” from the rooftops. BUT we love our food-allergic child so much more than we hate any of those things and because of that, we’ll stand firm even if it goes against every laid back bone in our bodies. Our child’s life truly hangs in the balance and our diligence is the string they are dangling from as they live and move in a world where seemingly innocent items that can take their life.

We know what it is like to totally overhaul a diet, because we’ve had to do it for keeps.

We know it isn’t easy to find substitutes for your child’s favorite lunch or snacks because we’ve been there, except in many cases, we’ve had to find permanent replacements not just for our food allergy child, but for the entire family. We’ve personally had to remove all dairy, eggs, and peanut/tree nuts (and anything containing those items, even in trace amounts) from our home, every meal is different now. Do you know how much this family loved CHEESE? Do you know how many foods have milk, eggs, or nuts in them, even in trace amounts? Almost all of them. We basically started with a blank slate and had to rediscover the wheel. So we know it is a difficult adjustment, even for a single meal, but we also know that sometimes you find some new favorites when you are forced to try new things.  Food allergy parents are also great resources for ideas of substitutions that are actually pretty tasty! If you are struggling to find something safe and yummy, ask an allergy parent for help. We really like it when all of this knowledge we’ve been forced to acquire can help others!

We know what it is like to have picky kids that will not accept substitutes.

Josie is my food allergy child, but K is my picky(est) eater. Because of her complicated sensory and medical issues, her list of foods is infinitesimally small. I know that when some of you say, “My son will ONLY eat peanut butter sandwiches.” it is really true. At the time Josie was diagnosed, the foods K was eating here at home were: bacon and mayo (mayo has eggs), Blue Bell Homemade Vanilla (eggs + dairy), Cool Ranch Doritos (dairy), and Lay’s Classic chips (SAFE!). She almost lost her entire diet. Thankfully, she is mostly tube-fed, and thankfully, she is on elemental formula which is safe for Josie to be around, but it is a less-than-ideal situation. (We have had to make the compromise, against allergist instructions, to allow “contraband” to be eaten on the premises, but only outside and with thorough washing afterwards.) We understand that this is a difficult place to be in, truly, and as I said earlier, we hate to be putting you in this difficult position, too.

We know that one day our children are going to have to be responsible enough to avoid eating their allergens without us engineering their environments, but today is not that day.

One day, Josie is going to have to wake up and get ready all by herself, get in a car, drive to a job, feed herself, make her own coffee, use a toilet, avoid all of her allergens, and do a lot of other complex tasks that she is nowhere near ready to do. But today, I’m not going to put her in the front seat of my car, start the engine, and put it in drive, and watch what happens. Obviously, it would be beyond her capabilities to keep herself safe in that situation. Managing food allergies is also a complex task that she is nowhere near ready for, and she won’t be able to make these life or death decisions for a very long time, so until then she needs to be in safe environments and with people who know how to keep her safe and are willing to help do so.

We are so incredibly thankful for the people in our lives and communities that take the time to understand these things and accommodate and include our children.

Food allergy life can be isolating. There are so many places we cannot go, so many things we cannot eat, so many people we cannot trust or who aren’t all that interested in making the sacrifices it takes to be a part of our lives after all of these changes. We are so lucky to have people in our lives who are not put out by constantly having to come to our house, who don’t mind reading labels or running things by us for safety, who remember to wash up, and some of whom have even declared their new upstairs to be a pet-free, food-free area so that Josie can get out of the house sometimes, and are definitely 100% on Team Keep Josie Alive, and we are endlessly appreciative of it. We know it isn’t easy!

If you are feeling (understandably) bristly or frustrated about the changes that you need to make on behalf of someone else child either at home or in your direct community, there is a really simple way to quiet those feelings…imagine it was YOUR child. Take a second and really think about it. Imagine that you had to send your child out into a world where milk or eggs or nuts or a sliver of cheese or a crumb of cookie or the wrong brand of sunscreen or finger paint or the powder inside a balloon could take their life at any time if you were not diligent. Imagine that you are all that stands between them and death, every day. Imagine that what you pack in their lunch or what her classmate packs in his lunch has consequences that could last a lifetime, or could at least determine the length of a lifetime. Imagine that you wake up in a panic at night because you can’t remember if you read a food label (you did, probably 3-4 times already) so you have to get up and dig through the trash to be sure you didn’t absentmindedly put your child’s life in danger. Imagine that one day you will see your child in distress, struggling to breathe, and have to hold her down and jab a needle into her thigh and hope it saves her as you wait for an ambulance, because something got past you in spite of your best efforts. Imagine it is your child that needs a community to stand between him and mortal danger and imagine how thankful you would be for those people, how amazing it would be to have people willingly step in and help you keep your child safe from harm…and then go, be one of those amazing, life-changing, life-saving people! ♥