Tag Archives: Food Allergies

Fair

Fair.

It seemed to be the theme for the day.

It started with a patient I was working with that has been battling Parkinson’s. After he informed me that he was going to be disabled for the rest of his life, I just responded with “I know, it’s not fair”. He shrugged and said “it’s life”. Seeing where the conversation could go, I said “well, the phrase isn’t ‘life is fair'”. We left it at that and continued on with therapy.

Skip ahead a few hours and I for some reason thought my whole family would enjoy a Friday night at the town carnival. Now, to be clear, by the whole family I mean “the kids”. I’ve been here way too many times to enjoy the scene as an adult, but to be fair, for a kid it’s pretty fun. 

It’s fun, but it’s loud, it’s crowded, and there are a lot of lights and things to look at. Hell, I get overstimulated. But for a 7 year old autistic child heading home 30 minutes after bedtime, it was way overstimulating. This was as lose lose situation for us. I knew the carnival would bring tears but I also knew that not going would bring tears. What brought the tears on started was the fact that her brother choose to get a fancy you gun that made lots of noise and lit up while she chose to get cotton candy, which he was unable to eat. Charlie would not shared his fun new gun and I told Molly she couldn’t play with it until she wanted her hands. We were 3 minutes from our house. In that 3 minutes we got to how it wasn’t fair that her brother’s peanut allergy was ruining her life because she couldn’t play with his fun because she ate cotton candy. (If your confused, welcome. Pour some wine and join my team). Then came the doozy…. It’s not fair that her friends get to have fun and we never do anything fun. Remember, on our way home from the carnival, ate cotton candy.

Needless to say, the night went downhill quickly. When things calmed and I held my Chardonnay, paying bills at 9:00 PM, all I could think was “shit, none of this is fair”.  It’s not fair that she can’t have a good time, having a good time. It’s not fair that he has to miss out on delicious food and events. It’s not fair that he gets blamed for ruining things because he could die and wants to be included. It’s not fair that we are raising 2 difficult children. It’s not fair that he will go under anesthesia for the third time in 5 years. It’s not fair that no matter what we do, big compromises have to be made to keep peace or someone alive. It’s not fair that I feel like several 10 minute crying fits a day is “getting better”. Life isn’t fair. 

Food For Thought

I’ve been doing some thinking…

Often, when non-allergic parents complain about dietary restrictions in the classroom they blame the parents. Sometimes, the child but, it’s often the parents. It’s my fault your kid can’t take peanut butter and jelly to school. I’ve heard it, I’ve heard people complain about how hard it is to send a lunch to school that doesn’t involve nuts. Believe, I know it’s difficult. It’s not impossible.

Charlie’s class is nut free. But not because I asked or demanded that it be. In fact, I didn’t even mention it. The school had a policy in effect for food allergies that stated that I would send in his food for snack time. When he started in the two year old program, I showed up to orientation with a shopping bag full of snacks, with his name on it, for the school to serve him. I was ready to comply with the set of standards. Only I was met with his teacher informing me instead of that, they would like me to provide a list of food that is safe for him to eat and they would buy class snacks based on that. They would make the class nut free and for the other kids “special days” (when the parent of the child brings in the snack) I would be responsible for coordinating with the parent and either alerting the school if they could eat it or send him something comparable. Easy.

Again, I didn’t ask for it. As it turns out, the school is staffed with teachers. They aren’t doctors, nurses or really anyone that feels comfortable giving a child an injection. They are teachers. They teach. They manage a classroom of 2, 3 and 4 year olds. They don’t want to have to inject my son with epinephrine anymore than I do. They make his class safe because it benefits him, me AND them. It’s a win-win-win.

Now, I ask you, don’t imagine that it is your child that could die or that would need to be injected as they struggle to breath, but imagine it’s you. It’s you that is holding a scared, flushed, vomiting, suffocating child that is covered in hives and YOU have to save their life by jabbing a needle into their thigh, how would you feel about allowing the peanut butter and jelly in your classroom? Something tells me you wouldn’t sign up for that situation. Schools don’t either; or teachers, or scout leaders, or camp directors, or whomever. It’s a scary as shit situation. I know, I’ve done it. I remember it like it was yesterday. I was lucky enough to have a friend react as quickly as I did and hold my burning hot, vomiting child while I jabbed his thigh. I couldn’t imagine doing it by myself in a classroom of 16 other kids. I doubt YOU would want to do it.

So instead of cursing at an innocent child or a parent that wants to protect them, try to sympathize with what the caretaker of that child would have to go through in the extreme accident if the allergen is consumed. Then, maybe we could all be a little more understanding because it affects us, not them.

Learning to trust my child around food

“I’m just looking!”

That was yelled at me in a disgusted tone after I tracked down Charlie and reminded him he couldn’t eat a piece of the animal cake served at the party.

I felt awful. I had went around and around with him that he would eat only the cake I brought and he seemed to understand but I still hovered and didn’t trust him to do the right thing. As my good friend pointed out “He’s 4. He can’t be trusted”. It’s true. It didn’t help the guilt that I felt.

Here’s the thing. As a food allergy parent, I HAVE TO TRUST MY CHILD. I need to know that he will make good choices or I will probably go insane. Quickly. I need to know that he is listening and he understands the severity of his condition.

I’ll repeat that….. my four year old needs to be responsible for his life.

Although I have a wonderful community that keeps an eye out for him and does everything in their power to keep him safe, Charlie still needs to be the person that knows what he can and can’t put in his mouth. Or up his nose for that matter. He needs to know to ask about ingredients and he needs to know what ingredients he can’t have.

In some ways we are lucky. Charlie had his first allergic reaction at the ripe old age of 13 months. He doesn’t know what life is without an allergy. The rules and habits we’ve established are all he’s ever known. He doesn’t long for his favorite candy bar or ice cream he can no longer eat. He won’t know what it is like to go somewhere without his epipen. He will always be the kid with the “special snack”. That’s just his life.

At the age of four, he knows he can’t eat peanuts. He knows how to administer an epipen. HE KNOWS HOW TO SAVE HIS LIFE. The amount of responsibility and trust that we put onto that little person is astounding. A four year old needs to have the self control of an adult, and more depending on the adult. (I’m looking at you, Stampy).

I think that is one thing that is majorly overlooked when we talk about these “food allergy kids” and “food allergy parents”. We miss the amount of trust and responsibility that these kids have at such a young age. And the amount of trust that parents put into their kids at such a young age.

It’s not because we want to or even have to. No one is making us trust our children or dole out this responsibility to them, it just comes with the territory. It comes with the epipen. It comes with the allergy.

Imperfectly Perfect

“Every mom wants their child to be perfect.”

Those words felt like a punch to my gut. Anymore these days, it doesn’t take much for people’s comments about parenting (or how I choose to parent) to really get me riled up. I am who I am and I make the best choices I can make in the situation I have to make them. For some reason, this statement made me think. 

I don’t have perfect kids.

I don’t want perfect kids.

I am the mother to one child who had to have his urethra reconstructed (he was born not perfect) and now has a malfunctioning immune system. I have another child who has a malfunctioning nervous system and digestive tract. I know a lot about imperfection. 

It’s those imperfections that make us a perfect family. 

We cry together, we flip out together, we laugh together. We all avoid overly loud places that Molly can’t tolerate and restaurants that will easily send Charlie to the hospital. Molly teaches people how to use an epipen and Charlie hugs Molly and tells her everything is OK when she can’t quite get it together. My kids learn compassion and fairness. They learn that everyone has a bad day and that sometimes you have to wait your turn.

More importantly, it’s those little non-perfections that make those kids MY KIDS. It’s what makes them unique. It makes memories and multiple hospital issued baby blankets. It gives us great little personalities. It gives us little fighters.

It is what makes our family imperfectly perfect. 

Baking from scratch

It’s a cold snowy day here, so what else would I do but make a cinnamon coffee cake this morning. We need something to warm our bellies in these close to single digit temperatures, wind gusts and snow flakes. Loving to bake is something I probably take for granted. I’ve been doing it my whole life. Now that we have food allergies, I realize I’ve been taking something else for granted, fresh bakery bread.

There are the obvious foods that we can’t eat. Nuts. Peanuts and most tree nuts are off limits. But what most people don’t realize is that it opens up a wide array of foods that are also considered “unsafe” and that includes bakery goods. One of our local bakeries won’t even accomodate food allergies with special orders. They say they cannot guarantee 100% safety from cross contamination. Honestly, I don’t know if I would trust a bakery that would accomadate us. Not unless they would allow me to apron up and join them in the kitchen.

So, with that being said, I thought I would share some of my new at home favorites that I’ve learned to make over the past 21 months since we ventured to the hospital with our first episode anaphylaxis. For each I’m just going to direct my readers to the webpages where I have stumbled upon these great recipes.

First, I’ll start with the cinnamon coffee cake I made this morning and have been eating all day. My friend shared this on Facebook not that long ago and I knew the first snow day we had I would be making it.

photo by flourmewithlove.com

Who wouldn’t drool over that? Or eat it all day long? I have done both. Great delicious cake that was pretty quick and easy to throw together.

Next up. Fresh bread. I tried on multiple occasions to make homemade loaf bread and I failed every time. So, I moved on to good hearty bread that is awesome with soups, stews or Italian dishes. Plus, it’s the easiest thing ever to make. I actually feel foolish for buying bread after making these next two recipes.

This is my tried and true no knead bread. It is a fix it and forget type but always gets rave reviews. This bread is also egg and dairy free! This is always a staple around our house and it doesn’t last long.

Photo courtesy of http://www.yumsugar.com

Then over the weekend I realized I was a Pinterest hoarder and thought I should put some pins to good use, so I made garlic rosemary bread. This bread will be a repeat offender. It was as easy as it was delicious.

 Garlic rosemary dutch oven bread loaf

Photo courtesy of http://www.sheknows.com

Next up in the bread catagory are dinner rolls. I will admit that after failing at loaf bread and biscuits, I wasn’t too keen on wasting time and ingredients to make rolls. But the snow got to me into a baking mode (it isn’t hard) one day last winter and I experimented and fell in love. These are pretty simple and delicious. A big shout out to user “Jean” at Food.com for submitting this recipe!

Photo courtesy of amireidey @ food.com

The last DIY recipe is granola bars. Where these aren’t “bakery staples” they have been a staple of my diet for longer than I can remember and I miss them terribly now. It’s hard to find decent ones that won’t break the bank and are safe to eat. Most companies have nuts in one variety of bar so all are contaminated. The ones that are safe I usually end up giving to the kids and not inhaling them myself, so I’m still missing out. Then my friend turned me on to these chocolate chip granola bars from Weelicious. These got rave reviews from the kiddos and were beyond easy to make. I highly recommend them. Also dairy and egg free!

Chocolate Chip Granola Bars

Photo courtesy of Weelicious.com

So there it is. Easy, simple baking that is allergy friendly. All of these even the most novice and “time crunched” bakers could tackle successfully. I hope you enjoy making and eating these as much as I do!

Photo courtesy of peanutallergy.com

Ryan Gosling approves 🙂

Dining with Charlie

Image

Last night I was having dinner with the kids. A meal I prepared myself, with nut free ingredients in our allergen free home. Charlie started to cough and cough and cough. Now it was the cough that sounded like something went down the wrong pipe and if that had been Molly coughing, I most likely would’ve told her to get something to drink but it was Charlie so instead I started to internally panic. I realized that most non-food allergy parents miss out on this psychosis, so I thought I would share my train of thought with you after I heard Charlie coughing for the next 5 minutes.

Why is he coughing?

Why is he still coughing

Oh God, did a factory cross contaminate?

Did I read the french fry label?

Did someone put their hand in the peanut bin and then touch the broccoli at the grocery store?

He is still coughing.

Wait, he has been coughing all day. Is he sick?

Does he need a drink?

Yes, get a drink.

Is his face red? Is it getting redder? Oh, right, he is coughing.

Has he developed a new allergy?

What did I put in the meatballs?

Is your lip swelling?

No.

Is that a hive?

Seriously, have his lips always been that puffy?

Phew, coughing stopped.

Breathe, breathe, breathe

Please don’t vomit. Please don’t vomit.

I should check for hives.

That was seriously 5 minutes. The rest of the evening was keeping one eye on him in case he started breaking out in hives or vomiting. The fun never ends here.

A Week of Thanks

Every November I try to say what I’m thankful for on Facebook on each day of November. I’m not going to lie, we had a tough week this week but I still managed to start out being thankful for my kids today. In the grand scheme of things, they are pretty awesome, quirkiness and all. However, I feel like I had a lot of be thankful for this week and I feel like I should have started out giving thanks earlier than November first. So, I will share here what I was thankful for this week.

1. Yoga. On top of it’s breathing and relaxation techniques, I’m thankful for the flexibility and strength it has given me. Without out, I don’t think I would have been able to wrestle Molly into her car seat, twice, without all that extra bending ability and core stability.

2. Wine. This should go without saying, but I’m extra thankful for the nice people at Bota for putting it in box form. And making that box slightly classier than Franzia.

3. Radio. Nothing drowns out a child kicking and screaming than Top 40. To be honest, I don’t even know what I was listening to, I couldn’t hear it over the screaming.

4. Swedish Fish. I’m thankful to whichever neighbor gave us Swedish Fish in Charlie’s bag on Halloween. That way at every other house when he handed us a Snickers and said “open this” we could give him a fish and subdue him until the next house.

5. Sleep. I cut my coffee intake by half this week and although I feel much better physically and seem to have less brain fog, I can’t sleep. I’m thankful for it and hope it returns soon.

6. Preschool. Especially the aide in Molly’s class that peeled her out of the car kicking and screaming as if it was nothing and she was happy to see her. Let’s face it, we all know she was thinking “oh Jesus” or maybe not since it’s a Christian preschool but I’m sure whatever her thoughts were, they weren’t great. No one could be excited to have that child in that state being handed to them. I’m her mom and I would run the other direction.

So, there you have it. What I am thankful for this week. I wish I could be thankful for Stampy bringing home some food from his happy hour, especially a cheese plate, but I know that won’t happen.