Allergic to Life

By Samantha Newton McCurry

That's what some call our son, CJ. Allergic to life, allergic to the world, allergic to everything... Sometimes it feels like it is the way of life but there is hope. Sometimes its just as simple as a silly joke and isn't that hard to live with, day to day. However...there are also the darkest of days too.

I hope you never have to experience the panic of seeing your phone light up as you're in the middle of a very important work meeting 30 minutes away. At that point nothing is more important than answering that call. I hope you never have to answer the phone with your heart clinched so hard you don't know if you can breathe. The panic of knowing that if you answer that phone something may be wrong with your child. For some, if they're at school it may be "a bump or bruise" or "oh your child got bit by another" but for me it's the panic of did my child come in secondary, tertiary or primary contact with something or consume something that could kill him. The added anxiety of leaving your kiddo so you can go have a date night or have a weekend get away.

The panic that even if I'm working from home I'm still 15 minutes away. If I'm working in the office I'm anywhere from 25 minutes or longer away. And that's too long of a time unknowing... anxiety... adrenaline... and being scared beyond words....when seconds matter! Racing down the freeway, yearning to hold your child and hoping the right actions have been taken in time. Even if your food allergy kiddo is right there with you, hoping you've done you've things right in the hard times. Calling your husband so he knows what's going on at every bump in the road or situation or yelling across the house so he can call 911. Having his support as you work through this together, even though you're both scared literally to death.

The panic of hearing that just 2 sips of milk could cause him to vomit and break out in a rash, requiring an epipen according to his Food Allergy Action Plan. Not being able to breathe until you get every update and every picture they can send. Hearing that a child simply ate a cashew bar and touched the door, which your child so eagerly was pushing open minutes later as he was coming in from the playground outside so he could be first for circle time resulting in facial swelling and hives. Getting the call that your child got ahold of cantaloupe that had peanut butter on it because he crawled across the ground when the teacher wasn't looking for your kiddo to be covered in hives and swelling, needing an epipen. Or even the surprising anxiety of watching your child having a complete full blown anaphylaxic reaction and not being able to breathe after he's eaten an egg casserole which is had many times before...with the 1st ever epipen that saved his life. The panic of seeing hives appear on him because someone ate something with any type of nuts within the past 2 hours and kissed him or touched him without thinking. The worry of seeing hives appear on his body and not knowing why...until you realize he's airborne to the eggs being cooked in the kitchen across from you and never realizing that simple eggs....could cause such harm. Or even the guilt of accidentally and unknowingly having a salad dressing in the house that had walnut in it that you've bought millions of times before but didn't double check that one millionth-and-one time, when all he wanted to do was eat some of mommy's salad and you didn't know what happened until you were already on your way to the ER after an epi being given and your husband on the verge of breaking in tears as he witnesses paramedics pulling to our driveway for his son who's in need. We've experienced all of these specifically and more.

The feeling and hanging silence in the house after a reaction when everything is calmed down and it's going to be ok. You consider your family lucky and pray in gratefulness as tears roll down your cheeks....so grateful that it wasn't the worst case in scenario, like so many of other families who've lost their loved one unexpectedly. When you hold your sleeping child, no matter 3 months or 2 and a 1/2 years or much older, that you're too afraid to put them down and can only cling to them desperately as they sleep. Smelling their hair that's freshly washed to get rid of the smell of a hospital stay or the vomit or sweat from the body's response to fighting for its life. Watching their every breath to make sure it's not their last even when a doctor says he should be in the clear. To make sure a secondary action wasn't happening, which can happen within 5 min to 24 hrs after the fact. The adrenaline still running through your veins hours to days later....The pure exhaustion.

Never being able to just "relax, it'll be alright". Always having to be on the tip of your toes wherever you go. Always carrying 2 EpiPens in case 1 doesn't work or 2 are actually needed and medics can get to you in time, a bottle of children's Benadryl or Allegra for the mild reactions but scared to use it in case it masks symptoms which its been known to do, various safe snacks, his own water bottle, packs of wipes to wipe things down, a lovie for him to cling to in the scary moments, a spare phone charger and cash jussssst in case you're stuck in the ER or hospital, toys and books to distract him in times of need. Always being prepared and reading every ingredient, every menu, so many websites. Having to make your own dishes with alternative ingredients and new recipes. Making their own special treat if they're going to a birthday party or doing class project. Holding your breath around Halloween and Easter and every other candy or food related holiday. Supporting the Teal Pumpkin Project. Following Red Sneakers For Oakley and Food Allergy Research & Education. Rarely having date nights alone or being away from him because the anxiety of not being there to hold him if something does go wrong or an accident happens. Holding him down as he screams because that was his 10th blood draw before he turned 2 and rocking him against your chest so he doesn't scratch his back from the 4th set of skin prick testing in 2.5 years. And you know that there's so many more to go...unless you're the lucky parent who's kiddo just happens to grow out of one of their allergens. But knowing that your kiddo is allergic to so much more than JUST one...you pray they'll be more than just lucky in life. You hope and pray he/she will have the support and protection from so many others in their life.

I pray you never have to experience this...but this is the everyday life and everyday worry of a Food Allergy Mom and Parent.

I refuse to keep apologizing for getting emotional and being upset. If you are given the responsibility and honor of loving or taking care of or being around someone with food allergies...please educate yourself! If you aren't sure...ask. If you have questions, awesome bring them on! We have to work together! You never know... it could be a coworker, a friend of a friend, your child's classmate or a family member. It'll be lifesaving. And I am so grateful for those who have asked questions, that have learned and continue to learn.

Did you know...

* The Centers for Disease Control & Prevention reports that the prevalence of food allergy in children increased by 50 percent between 1997 and 2011.

* Between 1997 and 2008, the prevalence of peanut or tree nut allergy appears to have more than tripled in U.S. children.