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When you have a child with life-threatening allergies, you learn to live differently.
And it is not easy.
My son is deathly allergic to peanuts. But we have found that he reacts to even the touch of other nuts. Very unfortunately, he also reacts strongly to sunflower seeds. Not because of an allergy. Just, most likely, because of the factory where they are processed.
Max is deathly allergic to the smell of peanuts in the air.
On our last airplane journey with him—returning home from Norway back to Poland—we were taking an airline where they offer no service except for paid service. In other words, a really cheap airline.
The foods that they sell include foods with peanuts.
On the way to Norway, we did not notice anyone purchasing peanuts. The flight was very uneventful. And, believe it or not, when you live in Poland, a flight to Norway is also very short.
So our journey to Norway on the plane was great.
Upon return, however, immediately after the customers’ purchases, Max became swollen and red and leaned over to me as if to say, “I CAN’T BREATHE, MOMMA!”
My husband looked at him. I looked at him. We had no idea what was taking place when my husband sniffed the air and said, “I smell it. Peanuts.”
I grabbed Max’s life-saving bag and ran him into the restroom where I basically spent the rest of the flight giving him medicine, watching his breathing counting down the seconds on the clock to the number 20===where I read once that if you make it 20 minutes after an allergy attack, then you can start to breathe easier. Is this true? I don’t know. But when you are a mother to a child that may die due to food or air—it is really nice to have something to grasp. ANYTHING to grasp. Hope to grasp.
Poor airline. Poor customers. We felt horrible. Here they just paid for their food and had to close their purchased items and wait to eat them until after the flight.
And, of course, we were scolded. “We need to tell them AT THE BEGINNING OF THE FLIGHT!”
“Yes. Of course. We understand…”
Sigh. Hanging our heads. Hiding our son from the general crowd and air filtration system. Living in the airplane bathroom with shame and fear and all of it wrapped up sometimes into frustration. Frustration that you have to constantly helicopter your child. Especially when air or touch can send him spiraling out of control.
And yet you love your child more than you love your very life—and so you hover on.
No one ever said parenting was easy. Oh, and I should mention that Maxwell is treated as an asthmatic. Hence breathing problems super serious to start (he is on 3 daily meds as it is).
But that’s not all. Oh no.
Maxwell is also allergic to milk. Not in quite the same death-way. But in a way that also makes it very difficult to maneuver.
He welts at the touch of milk to his skin. His swells if ingested. He vomits. And he has great difficulty breathing, too.
I guess one of the only big differences is that the smell of milk does not bother him.
My coffee is so grateful for that one!
And my husband—because my husband LOVES butter! So do I. And freshly whipped cream. YUM! And my daughter loves mint-chocolate chip ice cream.
Therefore, I think we are all a bit happy that Max can be air-exposed to milk.
Peanut butter was a hard one for our family to bid farewell. You may judge and say, “Your child is more important.”
Listen, Peeps. We laid peanut butter to rest—but it doesn’t mean that we still don’t crave it, okay?!
But having peanut butter in our home made us all live in constant fear. And, thus, we banned our favorite food friend from our presence. It was not an easy thing to do.
Anyhow…Cooking for Maxwell is a daily—multiple times a day—chore. Every food prepared or every item purchased is scrutinized. Foods are kept separated in the refrigerator. And we have our 2-year-old son deathly afraid of new food.
And when people offer him food, he has known forever to say, “NO!”
Kids his age don’t understand and cheerfully try and try and try to give it to him. This eventually sends him running into my arms. And for that, I am simultaneously sad and grateful. Sad that he must run. Grateful that God has given him the fortitude to understand that his very life may depend on his actions.
And, as Maxwell nears 3, we all are getting better at Cooking For Max.
In fact, today, I was a Maxwell cooking machine.
Belgian Waffles for breakfast? Yes, please and CHECK!
Coconut milk, rice milk, orange juice, banana, apple, and frozen strawberry smoothie to compliment breakfast? Yes, please! And check! (No picture—it was devoured too quickly. Oops.)
Depression chocolate cake for snack?
With freshly whipped chocolate-coconut whipped cream? Yes, please and CHECK!
Fresh sopapillas for lunch? And fresh toppings for it (beans, corn, salsa, and more)? Yes, please. And check!
And dinner? Well, something Max friendly will come about—I am just not sure what. Yet.
How do we do it?
We found the following items to be musts in our home:
Good olive oil.
Good coconut oil.
Fresh popping corn kernels as it is a very Max-friendly snack.
Rice milk. Coconut milk. Oat milk. Max does not like soy milk.
A completely 100% milk free margarine.
Good chocolate that is 100% milk free.
And a huge separation of anything that may touch something he cannot eat.
We use more plates, spoons, and bowls than a small army—as we have to keep all things separated. He cannot touch his sister’s milk or straw.
He can’t have her chocolate—he has his own.
He MUST ask before he eats anything.
Should I remind you all that he is only 2? Two.
“It’s a hard-enough life for us kids!” Or is it hard-knocks life?
In any case, as Annie and the gang sing it—It is a hard life. For all of us.
But we are slowly getting into a Maxwell-friendly system in our home. We normally have 2 different meals at every 1 meal. One meal that all 3 kids typically eat. And one that Rich and I eat.
Jo and Max usually get the exact same foods and probably always will. Josephine does not even know what cows milk tastes like.
Ada is 9. So she gets to choose what she wants. And she even made the choice herself to give up peanut butter—her favorite food ever.
And the internet gets used a lot to help us get creative as we try and cook and feed a kid that has had to grow up a picky eater.
We like cooking. We like creativity. We like desserts.
We are just all learning to like it the Max way.
That way we can enjoy life together. The way it is meant to be.
Together. Even at the dinner table.
Here are where I found today’s recipes. And if it calls for non-Max friendly items, I just substitute them with his butter or his milk. Usually you can’t even taste the difference.
Real Sopapillas: http://allrecipes.com/recipe/real-sopapillas/
Coconut whipped cream: http://tasty-yummies.com/2014/03/04/make-whipped-coconut-cream/
Depression-era chocolate cake: http://www.sweetlittlebluebird.com/2013/03/tried-true-tuesday-crazy-cake-no-eggs.html
Best Belgian Waffle Recipe I have found yet: http://www.food.com/recipe/the-bestest-belgian-waffles-63071
Maxwell’s Peanut Forehead Kiss
So I read a very interesting article that half intrigued me and half annoyed me the other day talking about allergies being a “Yuppie” invention. No, actually, it’s an interesting article and worth the read. But I’m going to travel off of his path a bit. Stay with me.
You know—I hear all the time how allergies in kids aren’t as prevalent in 3rd world countries. I cannot account for why that is so. I do not know. I also don’t know how well documented health cases are in foreign countries nor how varied food is for the children in those countries. When my husband was recently in Zambia, they ate a lot of rice. And I believe that they eat a lot of corn cakes. And other food items such as roots that they would grind up and make into a flour-like substance (this is not in the big cities, this is when he was across the Zambezi River in very isolated villages). And a lot of beans.
Everyone has their theories but no one has the “Laws”. And most are still largely misunderstood and require more studies.
But, let me be honest, before I had Maxwell…
Before I had Maxwell, I was so annoyed by all of those allergy kids. And I internally scoffed at such madness (aka—their parents). And all of the label reading and all of the “Can eat this-Can’t eat that” nonsense.
Yep. That’s the way I roll. Sometimes I am a scoffing, unkind person. Not very Christ-like, eh? Poor Christ. Blame it on me, folks, not my awesome Savior.
Anyhow—I totally pooh-poohed (in my head-never out loud) all of THOSE parents and kids.
And then I had one.
One that started to welt one day after a bite of ice cream.
And then I accidentally dropped a smidgen of my whipped cream on his bald scalp and his entire scalp puffed up and turned red at 5 months of age.
And then I force-fed him creamy mashed potatoes stuffed with milk and butter…and he vomited for the rest of the evening. You’d think I would have gotten a clue by now???!!!
And then his little girlfriend gave him a peanut kiss on the forehead and we almost called 9-1-1 from the simple act of a forehead smooch. (Um, just FYI, my brother, the paramedic, scolded me for NOT calling 9-1-1. He said, you can’t SEE if his throat is swelling shut. True that. Oops. To be fair on my side, I have seen my son completely stop breathing on two different occasions of his life—one where he entered heaven completely and one where he was bagged for about 10 minutes. So, I do know what he does look like without oxygen and I figured he wasn’t there…yet. All in all, still pretty bad parenting.)
One of the latest-vigilant label reading 3xs over and then feeding. And, still, swollen head, wheezing, eyes swelling shut, welts on body.
Oh my. What was it this time? Bathe, bathe, Benadryl, Benadryl, Asthma inhaler, inhaler, inhaler…Go back and read the ingredients again.
Still stunned and curious. Can’t figure this one out—but won’t be giving him those kosher hot dogs ever again.
Raising a nutty kid…
Let’s just say, God has given me a very special kid that teaches me a lot about mercy and miracles. And this same kid teaches me a lot about my former contempt for the “annoyance” of those parents…because now I am one of those parents.
And I have the kid that can’t eat this or touch that. And, please, serve Cheerios instead of Goldfish (yes, please completely reroute your entire routine for my son).
And, “Do you know how to work an Epi Pen?”
And, “Oh—have you washed your hands and face after eating peanut butter? Okay. You can touch my son.”
You get the idea.
He wears a medical alert bracelet. His backpack is PACKED with all sorts of life-saving stuff.
And he misses out on eating a lot of ice cream and PB&Js with his sister and cousins.
And I probably drive everyone batty when I’m around.
Poor family. Poor friends. Poor strangers.
I am that mom. The one that drove me batty. So, I totally understand if you are, under your breath or in your mind, pooh-poohing me.
I deserve it!
I know I do.
For any interested, here’s the link: Nut allergies: A Yuppie invention http://articles.latimes.com/2009/jan/09/opinion/oe-stein9