If you were hoping for an article that would help you with how to jet-set around, back-pack around or cruise around with your ultra allergic child, sorry, what follows won’t be what you need. In all truth, I am scared to death to do those things with my highly allergic, chronically ill child. I know there are moms who do it and even blog about it and I think they must be the bravest people to walk the earth. I, though, have a great fondness for controlling the things that I can so that my Eosinophilic Esophagitis/Gastritis, Mast Cell Activation Disorder, anaphylactic-to-peanuts, and a long list of other serious allergy daughter can not die on vacation. And for me right now, with her being only 10, I feel like any travel outside of my car, is too full of unknowns.
What I CAN tell you about is how to travel with a freaky-deaky allergic kid with an immune deficiency and dysregulation, if you go places in YOUR OWN vehicle. Before my youngest was born with all of her medical issues, we travelled a lot. We have been beyond blessed to go to Europe several times and we have been on numerous overseas mission trips. Then Sparkle was born and her issues surfaced and we realized that our lives and our family was going to have to change. We still love to travel but our destinations need to be in the USA, closer to meds and doctors, should she need them. Instead of being fussy about what we can’t do, I have worked diligently to guide my family to focusing on all that we can do. Vacationing with a child whose immune system likes to throw fits over every little thing, is not easy task. But it can be done. Here are some tips for making precious family time on the road less dangerous and more enjoyable.
1. PLAN. PLAN. PLAN.
If you have an allergic or reactive kid, the one thing you quickly learn is there is no more just “winging it.” I break a piece of legal sized paper (because I am a dinosaur and I still write things with a pen and paper) into three catagories: On the Road, Where We are Staying, and What We are Doing. I want to encourage you to write things down, however you do it, because there is so much mayhem in getting ready for a trip. You WILL forget important details. If you have an allergic or medically complicated child, that is not a luxury you have. Make lists of things to pack, grocery lists for food to bring along, itinerary details as well as hotel contact info. Also, I highly recommend that you find out where hospitals are near the places you are staying, along with the closest med checks. It is too hard to scramble to find that information in a strange town when your child is having a reaction or is sick. Have those details in hand, so that when stress takes over your brain, getting your child the help they need is not delayed.
2. On the Road:
I am thankful for Siri. I can’t say that most of the time. Most of the time, I feel like she is some weird cyber seductress who is trying to woo my husband by her sultry direction giving. She even has an Australian accent! But when we travel, she is really helpful in finding the few restaurants that can usually make a safe dish for Sparkle. So that is one option, if your child has a safe restaurant, especially if it is a chain that can be found around the country.
Also, DO NOT count on gas stations to have safe snacks for your child. Pack things that are fun enough to make up for the heavenly junk food the siblings bring into the car after potty breaks. Or bring enough snacks that are safe for everyone. That always makes our time on the road less drama filled.
It is helpful to have some acceptable form of protein for your reactive child. It can be a very panic-y feeling when you have a hungry kid and you are stuck in awful traffic or the desert or something and you can’t just wing it. Or if you can’t find any grocery stores! Or if Taco Bell is the only place to eat for the next 120 miles!
We always have a cooler in the car with Applegate Farms lunchmeats and hotdogs she can eat cold. There are now little lunch-box sized sunflower butters that you can bring with apple slices. We are a no-nut house, but if your family is ok with them, nuts and seeds help tide a hungry tummy over until you get to civilization.
A lovely (not lovely) side effect of my daughter’s Mast Cell Activation disorder is nausea coming from constant vibration (which is pretty much what a car is). So, I have several throw-up bags at the ready. Also, our giant bag of medicines is right by me in the front seat. Especially on vacation, I have to be diligent to stay on top of Sparkle’s meds. There are a million thoughts filling your brain when you travel with a family, but remembering to give your allergic or medically interesting kid their medicine when it is scheduled, will make things more pleasant for everyone.
2. Where You Stay:
Sparkle’s allergy to dogs is almost as bad as her reaction to peanuts. This is the reason I have to be very careful not to get pet-friendly lodging. Even if the advertisement says the establishment has no pets allowed, I still call to make sure our room has never had pets. If this is something that bothers your child, don’t take a computer’s word for it.
Because she also reacts badly to mold, I try to find newer hotels over older, charming B&B’s. In addition, she reacts to strong smells. One lesson that I learned the hard way was when we stayed at a beautiful, new hotel in Gatlinburg, TN. It was a Christmas-themed hotel and it never entered my mind that it would be anything other than stunning Christmas displays all throughout the hotel, décor in the rooms and Santa reading The Night Before Christmas in the lobby each night before bed. Never did I think that Evergreen Glade Plug-ins would be plugged into EVERY SINGLE OUTLET or that the rooms had the fragrance-shooting doodads you find in public bathrooms, propelling Christmas Cranberry into our air as well slept. Needless to say, we slept with the balcony door opened to try to lessen the smell. We ended up cutting our stay there down considerably and upping Sparkle’s meds considerably.
I also make sure I know beforehand what meals the hotel provides. Are those foods that my child can eat? If your child is tube fed, what can they be doing while the rest of the family is eating? Are there restaurants in the hotel? Can you make an appointment to talk with the chef there to go over your kiddo’s food restrictions and see if they are willing and/or able to accommodate. If not, what is your plan? We have brought two full coolers with us on vacation, filled with safe foods for Sparkle. I make sure there is either a microwave in the lobby or in our room, along with a little fridge. Another great idea someone gave me was to bring an electric skillet on vacation with us. Those were the only dishes I brought on one trip, except for a spatula and some dishwashing liquid for cleaning up. This is so easy and convenient to use in the room and it allows me to make her whatever she needs to eat, regardless of what is provided in or around the hotel.
3. What You Do:
As much control as I have over what our travel experience is like with an allergic or chronically ill child, I have no control over what other people do in public places. The sights you see, the places you explore, the history you discover on your trip is what memories are made of. My goal is to not have those memories include an epi-pen and an ambulance ride. Just like at home, I keep a watchful eye over how Sparkle is feeling and what those around her are doing. I know her triggers. Are there people smoking? Kids with nut bars or peanut butter sandwiches? Is she getting too hot? Are there pets around? Can you hear the whirring of my helicopter parenting? I wish things didn’t have to be this way, but all my wishing doesn’t make my daughter’s immune system not go into full-blown battle mode. I do what I need to do to keep her safe and as healthy as possible, until she can do those things herself.
I believe that there is a richness that is added to a person’s life when they experience life outside their hometown. That is why seeing places that are different from where we live is important to us. I want that richness in Sparkle’s life, in whatever form her disorders allow it to take. I want her to see the high and low places of our country. I want her to interact with people of all skin types and see the beauty in their cultures. I don’t want her to just read about historical things, I want her to see it. I want her to experience big cities and Amish countries. So for that to happen, I have to do my due diligence. I must plan, cook ahead, bring extra meds, make phone calls and ask questions. And to be honest, it isn’t relaxing–not the prep and not being in places outside of our bubble. But it is so worth it, to make memories, strengthen family bonds and plant richness in my daughter’s soul. It might sound like too much work to you, and in truth, there are many moments when I focus on HOW much easier it would be to just stay at home, but then I remember my goals, whisper Carpe Diem to my own heart and get to work packing.