The New Normal of My Mother’s Day

The New Normal of My Mother’s Day

Mother’s Day is almost here. I’m happy and sad all wrapped into one, with sprinkles of mad on top.

It’s been two years since I lost my mother. It’s been two years since I saw her and could talk to her. I have learned so much about myself in those two years … and I can’t tell her. Well, I can. I talk to her nearly every day. I sort of throw conversations out to the universe and pretend that she is sitting next to me, nodding and chuckling along.

I tell her that I miss her, I love her and I am sorry.

I miss talking to her, texting her and tagging her in weird memes I saw on Facebook. I want to tell her all about how Dad is doing, so I do. When I am alone, I talk. Dad is ok, I tell her, he’s even drinking more water. I say, I’m working on a project with him and spending all this time with him has made the both of us happy, though, we are very tired.

I tell her how the boys are doing. Hank has really flourished in his new life, I explain, he has calmed and finds peace in his every day and brings it to me, too. Dave is one hell of a young man, he’s on his self-made path that will take him into a successful adulthood.

I want to tell her that I am sorry. I had been in a relationship where there was not a lot of sense of control. I want to tell her that I left. That I removed the toxicity and have started to heal the relationships with those who truly love me. I’m sorry that I allowed for someone to put up walls between us. I want to tell her I am proud of myself and know that she is, too.

As I started a rewrite of my book this year, I realized I am writing this new version of 10 Little Rules of Hank to her. I know if she was here, she’d be the first person to read it, as she was when I released the first version. She was the biggest supporter of my writing, in fact, she has always been a supporter to anything that I did.

She believed in me.

I know she would be pleased to know I have been going into more detail, with more resources to help others – branching out from just writing for myself as I did for the first version. I want to embody her approach to nurture others through comfort and love. I will be more like her in this second phase of my life.

From my new dedication:

My mom was a Finn through and through. Many of my strengths, along with the courage to just say, “Fuck it, I’m doing it,” came from watching her navigate through life. She and I had a bond where I was careful what I thought about around her, because you better believe, she could hear it…

Momala, I’m sorry, but I did swear in print… Love you.

Miss you.

Click here to preorder a copy of Wendy’s Revised 10 Little Rules of Hank.

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Rare, pshaw. Hardly!

Rare, pshaw. Hardly!

According to Apfed, Eosinophilic Esophagitis, a RARE DISEASE, affects 1 in 2,000 people. So, in the city of Ann Arbor, MI, where there are approximately 121,000 people living, we can hypothesize that there could be 60 people, who have eoe, walking through that college town of only 28.7 square miles.

That is the most math I have done in quite a while, please don’t expect that of me again.

 

So what is my point with all of this?

My dudes (yes, I talk like this in real life and yupper, I am nearly 40), we’re not alone. None of us are. Last week, I received a message through one of my social media platforms. It made my day, that someone came to me with questions. This young lady was freshly diagnosed and, rightly so, was distressed. It was a relief to her to find our story and to find someone else with this link. Hank may be rare, but he isn’t the only one in the neighborhood! So, how do we go about finding others in our same boat?

Social Media: Through Instagram, you can find other families like mine. Families that document their daily lives and struggles, triumphs and wins. Head over to Facebook and not only can you also find us, you can join support boards that cover the world, your state or possibly your county, province or city. And if you can’t, you can start your own! Connect with these families, engage in conversation, ask questions. I have found that most people will answer your questions and lend support. So, ask away!

APFED.com: I love this group, here, you can find local, volunteer-led support groups. This page will also connect you with their online support group.

Your doctor: Who better to know of your local resources than the men and women who are helping you navigate this situation? Ask there for suggestions as well. The bonus here, is that they may be able to recommend a therapist for better one on one support.

I, personally, respond to all (appropriate) questions that are sent to me and usually have the time to dedicate for a conversation. I am not an expert and I don’t sugar coat our experiences. But I am also available for an extra shoulder.

 

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Yum! I hate it!

Yum! I hate it!

Food trialing is an interesting endeavor. Not only are you trying out new foods and companies for allergens or cross contamination, but you are also trying to gather more food for the family menu. We’re one of those crazy families what will not make separate meals for everyone at the table. We will, of course, leave off a component if there is an issue; Dave hates pickles – no problem, Hank has issues with tomato sauce – not an issue, Hubs refuses beans – leave them off. But we sit down to the same meal.

The hardest part of trialing, I feel, is when there is a new food that Hank can eat and likes. We buy it, he loves it and we make it apart of the menu, whether it is a snack or a meal. Since I hate to waste money, I will buy when I find items on sale, or when I can fill an Amazon Pantry box. But that also means that I may buy more than just one to make sure that we have it in our “stock”. You see where this is going, yes? You know what is going to come next? When, and only when, I have more than one box in my stock, that is when he decides that he doesn’t like it. Thus, causing me to eat it myself, or store it to try again or donate.

Right now, I have 4 boxes of carob granola bites, 6 bags of everything free Hank-safe stuffing mix, 4 carob suckers, two bags of “new” beef jerky and three boxes of cereals that he liked and rejected. He really likes to stick with what he knows and loves. We re-introduce these foods a few weeks later, but maybe 80% of the time, dude rejects them again.

Last week, I took the remaining box of muffin mix from Enjoy Foods, we started with 6, and tried them again. The first time, I had used a donuts shaped tin and coated them with cinnamon and sugar. He loved them. The one time, that is. I had made them again and he refused. I have added carob chips, blueberries, brown sugar crumble and he has hated them all. For this batch, I added two bananas, a cup of mini carob chips and three tablespoons of SunButter. HE ATE THE WHOLE BATCH. So, as I am a creature of habit, I already have another 5 boxes in my Amazon Pantry box, ready to do this all over again.

The best advice that I have, if you are going through the same thing, is to not get frustrated (SNORT). Eating for him is hard and he only eats so much in a day, so, slow and steady progress. We go on binges every month or so, when we go to the grocery and scour the aisles for food that is Hank-safe and then present it, very scientifically, for him to try.

We sit down as a family and watch food programs, not to frustrate anyone, but to learn what other people are eating. I assure everyone that we can figure out how to make the meal taste close to the original, as long as everyone understands that I am not a professional chef. Bizarre Foods is a family favorite, even if it does sometime turn my stomach. Sorry, Andrew Zimmern, but at times, you are cray –even if Hank thinks you are amazing.

Once I have pressed “Save” on this, I am going to start this week’s grocery list and I think that I am stuck this week. Throwing back to the menu planning post, what are you having for dinner this week? Because if I’m not careful, we’re going to have a meal of bugs and blood stew…

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Crouching Allergens, Hidden Tree Nuts

Crouching Allergens, Hidden Tree Nuts

I am bad at remembering things – all things. I have to look and relook at name tags, ingredients list, instruction manuals. In fact, when Crouching Tiger, Hidden Dragon was released in theaters, it was renamed Crouching Tiger, Hidden Treefrog by me; THAT I could remember. Because I can’t remember anything, I have to make sure that I research multiple times, everything, that comes into my home, because hidden allergens are everywhere. EVERYWHERE. Wheat in PlayDoh, sesame in lotions, orange oil in soaps, soy in tea, barley in “natural flavoring” … the list goes on and on. The hubs and I have to read every ingredient list for every consumable product that comes into our house. Grocery shopping for new foods takes forever and we still have to double check products after we buy them, just to make sure that we aren’t unwittingly grabbing something that we thought that we properly cleared. To be completely upfront with the fact that I am not an expert, nor a robot, I have on many occasions posted to my local mom group with bags of free food that I realized too late were processed on shared lines.

When Hank started Kindergarten, I worked with his teacher to come up with an alternative to Playdoh. After a messy mess and another sticky gross maker, we did find this recipe from Parents.com that worked well. Held its color, shape and didn’t leave a horrid mess on the work station.

We have taught our children to look at the soap in public bathrooms. Typically, if the soap bottle has a picture of an orange on it, I have found that they use orange in the product. However, since strawberries are more expensive, manufactures tend to use an artificial scent. I have read on my support boards that several families carry a plastic baggie with safe soap in it. Not even a hotel will be safe; we stayed at a hotel this past summer where the shampoo and lotions had sesame oil in them. We didn’t use them, but I side eyed everything in the room that could have come into contact with it.

I drink a lot of decaf chai tea and have a particular brand that I am very fond of. However, after Hank asked for a sip (AND I GAVE IT TO HIM) I realized that I never checked, but I figured that it would be safe. This is never the case; it won’t be safe just because you think that it will. Always check before giving anything to your allergy child. I found that Bigelow tea uses soy lecithin in some of their teas to help disperse tea through the cup.

Even at the dentist, you need to always be your child’s mama and papa bear. We couldn’t get a clear ingredient list on the polishes and fluoride used in the dentist office. For his safety, Hank gets plain ol’ flavorless pumice for his cleanings. The best part of him never having the bubble gum flavoring? He doesn’t even know that they exist! We have a great family dentist. So great, in fact that they met with the manufacture representative for their fluoride supplier. They, on their own, walked though all the ingredients and rejected their standard order as it contained an ingredient that could trigger a reaction to those allergic to nuts! They switched to make their office safer. Near tears that made me. You can read more about the connection here.

If you have bought a product in the past that was safe, it is always recommended that you reread the ingredients before buying it again. Companies can and do change out ingredients. And unless you enjoy giving foods away like I apparently do, check new foods from trusted companies. That elbow noodle may not share a line or a facility, but their lasagna noodle may…

To read more about common hidden allergens, take a look at this article on The Journal of Allergy and Clinical Immunology.

 

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The Traveling Circus

The Traveling Circus

Sit back, friends, it is story time.

Finding ourselves completely burnt out, the Hubs and I decided that we needed a vacation. It had been years since we had gotten away and we needed to do it again. We decided to travel down to North Carolina to visit with my mother-in-law and do all of the fun things along the way. Mammoth Caves. Check. Gatlinburg. Check. Driving over the Smoky Mountains. Check. Spending time in Cherokee (my favorite place, ever). Check. Then over to the coast for ocean living. Bliss. I am a planner and I am cheap, so I took a calendar and literally wrote out all of our destinations and reserved motel rooms and hotel rooms in advance and cost shopped around. Folks, right here is where your English teacher would be pointing out the foreshadowing. Right. Here.

I already knew that we needed to get creative in order to make it out alive. In a large tote, I packed a ton of food that was Hank-Safe for the occasions when we might not be able to find food that he could have. In that tote, I also packed the cups that he uses to drink his medical food and the accessories need to wash them. I packed a large cooler with his rice milk and his refrigerated medications. Then, the clothing. Little dude needs to have many changes of clothing, as the resident puker of the family, I had to make sure that he could be clothed at all times and that meant a lot of clothes and a bottle of laundry detergent.

Cooling off

Now, right here, I know that you are thinking, ‘Good Feta, woman! There are stores all over the country that carry rice milk, that carry laundry detergent, that carry food!’ But I am a planner and I was worried that it would be late and I would need something and I wouldn’t be able to leave to get what was needed.

Day one into the trip was lovely. We stopped at rest areas and ate packed lunches from the magical food tote. We ran around play areas and did yoga in the grass to stretch our legs and backs. We drove to our first hotel. We planned the first stop to land us near the Newport Aquarium in Kentucky. If you are ever in that area, you need to do yourself a solid and visit. It was here, in a parking lot, I realized that you shouldn’t leave your parking ticket on a magnet. Paid for a whole day instead of the 3 hours. A little salty, I was.

Day two, was Mammoth Caves! Oh it was glorious. The stalactites, the formations, the crying kids, the seized back muscles the Hubs got. Wait. What? Yeah. Something that I didn’t count on is how scary this wonder of the world would be on young kids. In their fear, they needed special hand holding and coddling. Twenty steps down into the cave, found the hubs, walking down, leaning forward and holding a kid’s hand. Forty steps down, he was able to stand up. His back, however, was not able.

We did not mean to spend more than two nights in that area, and therefore, I had booked the campiest motel that I could. It didn’t have a playground, working air conditioning or a pool – but that was ok, the next hotel we were scheduled to stay at was a super nice place with a massive pool. But now, I had a Hubs in the ER for the night and two kids with NOTHING to do. We were to hike around the caves for a few days, but they “noped” that activity after the first five steps into the cave. We checked out of the motel and checked into a hotel with a pool. Canceled the following night’s hotel in Gatlinburg. I could totally see the lost money flying out of my purse.

Day three, we swam. We waited. We went to the drug store and bought Pokémon cards. We finally got the Hubs back.

Day four, I drove Over the Mountains while the Hubs slept with his muscle relaxer.

Days Five, Six and Seven, we realized something that was golden and a simple internet search would have told me this, but did you know that the South is sort of famous for their BBQ?

This is where the ‘Laugh’ sign gets lit for the audience.

I wish that I had thought to research all the BBQ restaurants that were on the route of where we were going. If nothing else, this kid can and will survive on pulled pork. Even more, whereas a BBQ chef won’t tell me what is in his secret family rub, he will tell you if your allergens are in it. The relief was so strong, that I thought about leaving the very bulky food tote in a motel and driving off. I didn’t.

The rest of the vacation was uneventful and full of relaxation and bliss. We did find all of the local BBQ joints, we ate our way through the south, and we ended up coming home with a nearly full food tote.

Mining For Gold in Cherokee, NC

What did I learn for from all of this? I can’t plan everything out. It just won’t happen that smoothly. I learned that the one family member that I was most worried about was the least trouble. I learned that the world has options that we can use.  I learned that planning the vacation to stay inexpensive is like poking the proverbial bear.

Oh, and Cherokee is where I ended up spending my birthday. At the base of the mountains, with the scent of flowers and green in the air, I spent the twilight of my 38th drinking a water on a shared motel balcony with a motorcycle club. 12/10 would do again.

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What’s for Dinner?

What’s for Dinner?

Let’s talk menu planning! It’s so fun and exciting! You remember when I said that we have boring times, too, right? This is one of them. But seriously, menu planning is a lifesaver. A while back, I messaged a very large group of my friends and asked them what their dinner staples were. We were getting to the point where we were eating the same foods over and over again:

I got some interesting feedback from my friends. Many of them seemed to have weeks like mine, but a few of them had menus that they followed and rotated through. I wanted to be like those people.

One night, over dinner of Hank-safe chicken nuggets (see recipe here), I took out a notebook and as a family, we wrote down everything that we eat for dinner that we like. The list was short, about 10 items. So we started another list, foods that we had not tried before as a family but wanted to. This was the first step and we all felt super good about it.

The next step was to make a list of the days of the week and what we were doing for meals. Then came the list of the ingredients needed and what of that we already had in our larder or freezer. I know that this all feels very basic, but again and in our defense, we weren’t the only family living life this way. We were basically learning how to effectively feed ourselves. We’re adulting on a C- grade level here, folks.

Our list has slowly been increasing. From 10 staples to 24 in about six months. This is not a bad start. Someday, we hope to have a list that allows the love of food to come out a little more in all of us. Not to mention enough options that those of us without allergies won’t get bored of and therefore stop wanting to cook (it’s me, I’m talking about me).

I spend many hours searching for new recipes that I can Frankenstein into Hank-safe dinners. I have a Pinterest board labeled “Nom Nom Nom Nom Nom Nom” and another named, plainly “Instant Pot.” I can’t do it all, but I’ll try, even if the final taste is nothing like what the original chef intended.

Starting menu planning also has another awesome outcome: Saving Money. Yes, I used everything in my basic Word Doc arsenal so that it would look fancy. We have about 5 restaurants that we can safely eat at and two of them, Hank is forced plain rice. So, really – three. But a dinner for the four of us, with Hank’s being a series of sides and specialty cooked items, gets very expensive. $40 – $70 an evening seriously adds up. Not to mention that occasionally, we have to remove a restaurant as they change safe recipes or plate an allergen. It all becomes too much.

So, with extra money in our pockets and food made from our kitchen, we’re adulting near a B+ grade level.

Leave your favorite make at home dinners in the comments below, maybe together we can all be menu planners!

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Feed & See = Feed & Clean

Feed & See = Feed & Clean

Lets talk allergy testing! There are other tests available beyond the “Feed & See” approach…though this approach IS fun. If by you mean puke on carpet, on restaurant tables or on yourself. And really, we only suspected oranges as an allergen after three early morning breakfast runs to a local restaurant and having to leave each time, dripping in an orange juice/bacon cocktail. We know strawberries because of late night vomiting that stained the carpet upstairs. Dairy for the vomit in my truck … the list goes on. I seriously used to listen to other parents who were moaning that their baby spit up a lot and thought, well, aren’t they lucky that it isn’t projectile. And then, you know, I realized that parenting really wasn’t a competition. Baby spew, no matter how much or where it lands, is the worst. I feel the same about puke on clothes as puke on the ceiling. It’s all bad.

So, on to Allergy Testing!

When I was at the stage of, “WHAT IS GOING ON WITH MY BABY???” panic, I started writing down everything that Hank ate before he puked. That list got LOOONNNGGGG. Pancakes, sausage, strawberries, milk, noodles, rice (cross contamination issues right here), bread, cake … the list just kept going. There wasn’t a rhythm to this as far as I could see. Now, I can look back and pin point what certain items had in common. Eggs, wheat, soy, sesame, barley, etc. I can see it all now, but it was all blank for us then. I asked the hubs to call and take Hank into the doctor for allergy testing. I figured that we’d get back thea result that maybe he can’t have gluten. Easy peasy (I know, I know, it isn’t). The first test was a blood test. I still don’t know how they managed to do that with my wiggly, squirmy, runny 2-year-old. I could barely keep socks on him! Well, to be fair, I still can’t.

Since the list was long and his body was small, we could only test for so many things that day.

The call that we got after that test was the beginning to all the answers. When the nurse called, she told me that I needed to sit down so that I could write down all the allergens. Yes, oranges were on the list. At the end of the call, before this woman was able to let me go, she told me to call a make an appointment with an allergist, because, get this . BLOOD TESTING WAS INCONCLUSIVE. Mother of Pearl! There could be more that he was allergic to!

The testing that waited for us at the allergist’s office was the scratch test. This is administered to a child’s back, while they are laying on their tummy and, no, they cannot move for the duration. Allergens were applied to his back and a timer was set. For 15 minutes, the hubs and I took turns, enforcing that he couldn’t move. We streamed Dinosaur Train on our phones and played games and manhandled him back onto his tummy. Isn’t it funny that a child can hang out in one position for hours, but the second he hears that he needs to stay still, he suddenly sprouts wings and leopard legs?

The scratch test indicated that he was indeed allergic to nuts. Since the list was long and his body was small, we could only test for so many things that day. But guess what? The scratch testing was also NOT CONCLUSIVE.  This is normally when, for EOE peeps, you would work with the allergist and the GI doc to try a food and scope. Eliminate a food and test. But his flair ups were so bad that we started to just stay away from the foods that he had been tested for.

He was amazed that to Hank, it was no big deal.

We got the third allergy test after I had begun to really try cooking the foods that we love, but changing recipes to Hank-Safe. We were worried about tapioca because I was using it to coat chicken nuggets. I had developed a recipe that the whole family loved (see below!) but the kid was covered in rashes and eczema. We had another blood test done. This was the first time when Dave got to really see the medical side of this disease. He was with us and watched as Hank sat like a boss with the nurse; watched him as Hank watched his blood being removed. He was amazed that to Hank, it was no big deal.

Luckily, we learned that tapioca wasn’t an allergen, but the soy that was in the oil being used to fry the beloved nuggets was the culprit. We also added, officially, wheat to the allergen list based on this test.

There are other tests that you can do; the Oral Food Challenge is given by the allergist and allows them to monitor any reactions they see in the office. We never did that as we were more into trying an elimination approach where we avoid the known and possible allergens as defined by the “Feed and See” and “Blood and Scratch” tests.

At this time, we have a new thought on a food that he may be allergic to. Pea Protein. Peas. Legumes. The same family as the peanut. We are currently awaiting another test and in the meantime, we’re avoiding all legumes, which makes all the boys in the house very happy that my days of adding beans to the chili are at an end.

Hank-Safe Chicken Nuggets

We have made variations on this recipe in the deep fryer (we use 100% canola oil), in the oven and pan fried. No matter which way we make them, he eats them!

Ingredients:

  • 1 LB of chicken, cut into nugget size
  • 2 cups of flour, we use tapioca for crispness
  • 4 TBS of smoked paprika
  • 4 TBS of garlic powder
  • Salt and pepper to taste
  • 1 cup of water

Cooking Instructions:

  • Turn on deep fryer, set to 374F or preheat oven to 400F (Cook for 10 mins, flip and another 5) or start heating a large high sided pan on the stove top with 3 TBS of olive oil.
  • Mix flour, paprika, garlic, salt and pepper in a bowl. Add water to another bowl.
  • Dip chicken into flour mixture and then dunk into water bowl, dip chicken back into the flour mixture. Feel free to do this step a few times if you like a thicker coating.
  • Add to the fryer basket and put basket into the oil. Pull chicken out after 6 minutes and check for doneness.
  • Repeat for rest of the chicken.
  • Serve.
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School, the Germ Factory

School, the Germ Factory

So, it is common knowledge that schools have kids in them (seriously! They do!) And I think that we all know that kids have germs. Put those two things together and suddenly, you have mass produced illnesses. But, for these illnesses to take hold, you need something to carry it around. THE KIDS! It is a vicious cycle, folks.

Sending Hank to school was a scary prospect for us. We had seen his brother come home with everything under the sun during the first year and, in turn, infect us like he was being paid to do it. And he was healthy! Hank’s compromised immune system has seen him more sick than healthy this year. We had never had the croup in the house until this year and now we’re up to three times. The flu once, and cold after cold after cold. Right now, we have – what we think – is the stomach flu. Sleepless night and nothing staying in (and I stopped drinking caffeine?!? What is wrong with me?) coupled with being warm and floppy means another few days of sitting on the couch with the puke bucket.

Nesting with the Flu

Yes, I said it, the puke bucket. A trusty friend to flare ups, colds and whatever we are currently dealing with. I saw once, on one of my social media support group boards, that one common theme was the puke bucket. Nearly everyone had one. And I thought that we were so clever.

It is a glamorous life, the mother of an allergy kid. I would say an EOE kid, but, hey I think that everyone could use a puke bucket in their lives. OK, that was mean.

How do you avoid bringing these germs into the haven that is your home? This is what we do:

  • We enjoy a multitude of soaps at every sink. Take your pick! We have antibacterial liquid and foams, fancy homemade bar soaps and even a few tiny hotel styles from the Husband’s many adventures. I have noticed that sometimes a kid won’t wash their hands after the bathroom if you just have a plain container or a plain boring bar. Seriously. We’re finding fun here through the buffet of soaps.
  • We also utilize a complete housekeeping service here in our household. They come every day and focus on the entire house. Ok, it is me. I clean daily. When I first left my job, I experimented with making my own cleaning products. But now, I fall back on the convenient and premade manufactured brands that jam enough bleach into every wipe that they eliminate everything. I hate to think of all the illnesses that we are not getting because I walk around wiping everything down a few times a week.
  • Changing out furnace filters monthly is a basic household necessity, but it also allows for better air flow which help eliminate mold and dust.
  • Vacuuming everything. I hate this chore. HATE it. I hate lugging the vacuum through the house, but that feeling when I dump the canister is one breeching on victory.
  • Oh dear. Laundry. It is a never-ending cycle, but staying on top of sheets, shirts and those rando socks all over the house helps keep germs and sickness at bay.

Seriously, I am chuckling to myself right now. I am talking about all the cleaning and care that we do just to avoid illness when we have SOMETHING almost weekly.

Honestly, the best way to make it through the illnesses is to invest in a quality thermometer, many “trash” towels to clean up the never-ending puke and a beverage that helps rehydrate your sickos. For recipes on making your own, head over to Pinterest and see what you can find. For us, we’re lucky to be able to use Gatorade.

Do you have any suggestions that I haven’t thought of? Please, share them! Remember, you are a part of the family now.

 

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