Category Archives: Wild Card Charlie

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.

The hard times

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I was prepared for this. After all, we have been through a worse surgery when he was much younger. Tubes? We got this. Numerous parents have stories about how their child had tubes in and were back to normal that day. Pictures line my Facebook feed with happy bouncy toddlers 20 minutes after waking up from surgery in the post op room with captions like “doesn’t even phase him!” and “you’d never know he had surgery an hour ago” and on and on. Last time, surgery was 3 hours minimum with at least a 3 day hospital stay. This time it was 10 minutes with us scheduled to go home an hour later. Last time, I barely knew the surgeon other than what I had gathered from our previous appointments. This time, I knew my surgeon, I knew his family, I attended his wedding. This was going to be easy.

It wasn’t easy.

The good thing is, the fact that I knew the surgeon meant when they wheeled Charlie into the OR I didn’t think twice. That wasn’t the hard part. That was the only easy part. The hard part didn’t start until the recovery room. There was my baby peacefully sleeping, hooked up to monitors with a tube in his mouth to keep his airway open. I started to tear. I wanted so badly to pick him up or hold his hand, but I couldn’t. No touching, no calling his name. I forgot how hard it was to not hold your baby when you think he needs you most. I was told he would slowly wake up, he might be fussy or combative (“the opinionated ones usually are”) but he wasn’t. He was lethargic and tearful and in pain. He just cried over and over again that his ears and head hurt and that he wanted to go home. The problem was, he wouldn’t take any medication and he wouldn’t fully wake up which meant he continued to be in pain and we couldn’t go home. At least I could hold him and rock him. He slept and slept in the recovery room. We tried force feeding him Tylenol and Oxycontin to relieve his pain but he just wanted to go home. Close to two hours later, we were finally leaving. With a tearful, nauseated, sleepy boy. My heart broke for him. He insisted up until he was wheeled away for surgery that “nothing was hurting” and his “ears weren’t bothering him” and here he was in pain and sick. I knew in the long run he would be better for this, but I felt guilty at the moment for what I put him through.

Safely tucked in the car, I was prepared for the 2 1/2 hour car ride home. After all, the nurses told me he would most likely sleep the whole way and he did, right after he vomited all over himself and the car seat immediately after we pulled out of the surgical center parking lot. Somewhat calmly I cleaned him and his car seat up. My husband changed his clothes and we tucked him back into his seat. Once he was asleep, I just started crying. I didn’t feel as helpless as I did the last time, but I felt helpless. We couldn’t get home any faster and I couldn’t do anything to make him feel better. He was alone in the back seat. He woke about 25 minutes from home and cried the rest of the way and once again I couldn’t hold him. We got home and he cuddled and cried for most of the day. Not until bedtime did he start to come around, but his playing would be interrupted by tears of pain with his hands over his ears. This was not the fun day that so many had depicted on social media, nor was it as easy as other parents had made it seem.

I knew, though, in a couple of months I would probably give false hope to someone else as the memory fades of the emotions and you just remember that everything was OK in the end. It was OK in the end. It was OK 24 hours later as he played for hours outside with a friend and proudly announced that his ears were “all better!”.

I am an “Allergy Mom”

At a party recently Nutter Butters were served. I knew they were going to be there. As an “Allergy Mom” I had spoken to the party mom before hand and sat my kid at the table with my eyes wide open. The mom next to me started to panic when she heard me turn down the passed treat saying “no thank you, he’s allergic”. She asked me questions about if it was ok for her son to eat the treat next to mine, did I want them to move, why can’t her son take peanut butter to school, etc. The normal questions that I’m always happy to answer. 

I wasn’t prepared for our next meeting. At her own son’s party she came up to me and said “I told my friend about what happened at the other party and she was shocked that you let your son sit there and that you were actually nice about it!”

I think that was a compliment.

I wanted to face palm.

“Actually nice”. Like it’s surprising that a mom of a child with food allergies is nice. Not the impression that we, as a group, really want to hear. 

It made me think. Why do we get such a bad rap? Why do we need to stand tall and shout and demand? Why as a group can’t we work together to educate others and enjoy life? Why is this such a battle?

I started to think about other groups of moms. Thanks to social media and the internet we have grouped ourselves off pretty well. We are Breast feeders, stroller users, cloth diaperers, extended car seat safety moms, baby wearers, co sleepers, formula feeders, and home-schoolers to name a few. In each case we have labeled ourselves by a CHOICE that we made and gathered up with others like us to discuss our bond. There will be arguments between those that wear their babies and those that use a stroller. Crib sleepers and Co-sleepers are sure that the other one will be killing their child and let’s not even talk about the breast vs. bottle debate. But here’s the thing, those in your group mostly agree. You have a united front.

This is not the case with “Allergy Moms”.

None of us chose this label. In fact, nobody wanted this label. We got stuck with this label. We are in a group we don’t want to be in with moms who aren’t anything like us in our parenting styles. Here’s where the problem begins. We fight with each other. There are so many food allergies, symptoms and sensitivities it’s hard to lump us into one group. These people over here don’t care about the “may contain” statement while these families only use allergy free factories. This group is allergic by contact while this group by ingestion. This group has been to the emergency room while this group only has testing that says their allergic. My head is starting to swim just thinking about all the categories I could list. Everyone has a different comfort level based on their experience and their doctor. No two “Allergy Moms” are the same. Without a united front, we are still alone, fighting for our child. We want to advocate but honestly, sometimes I don’t know if I’ve made the right decision. Sometimes, I just hope for the best. It’s hard to worry ALL.THE.TIME. It’s daunting. 

I can understand why the non-allergic world is confused by us. We all want safety for our children but we don’t agree with what is the best method. And if those of us that live it everyday can’t agree, how are we ever going to educate everyone else? How are we ever going to get others to understand what is acceptable behavior and what is not? How can anyone understand any sort of protocol?

They can’t. And we can’t. 

So the next time you see one of us in high alert, instead of thinking “there they go again”, ask us. Ask us about our personal situation, our beliefs and our experiences that have led us to where we are today. That’s all we want, we want understanding and compassion for our situation. The one we didn’t chose. The one we live with every day.

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

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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.