Flashback: The Day Josie Became My Allergic Child

February 5, 2015:

It was a normal day in our home. I was sitting, pumping while Josie was sitting on the couch next to me, playing with her toys. She seemed so interested in what I was eating. “This child has yet to be interested in any food”, I thought. Every single time I’d attempt to feed her she would refuse it. She couldn’t even tolerate a simple glass jar of baby food. She’d vomit it back up an hour later.

So when I finished pumping, I decided to shove a tiny piece of my egg bake into her mouth and, well, the rest was history…

What I managed to push into her mouth was itty bitty teeny tiny bit. I honestly didn’t even think I got any in her mouth or that she swallowed any…

But she did…

Here was my post on Facebook that day:

“I’m at the Pediatrics. Josie had a severe allergic reaction. It was either eggs or feta cheese. It was a super tiny teeny little bit that made it inside her mouth. (My egg whites, spinach and feta bake). She immediately got red and itchy around the mouth and looked like little bites. And then she threw up and went poop. Within 45 minutes she was red all over and screaming. I almost took her to the ER. Now I’m here. I’m a mess. What did I do? Has anyone experienced this!? I never want to feed her foods ever again.”
While at the pedi, she started to desat. They had a lot of trouble getting a reading on her and when they finally did it was really low. Super low. 80%. She was pale in the lips and tips of her fingers/toes. I had no idea what was going on. But looking back now, she should have, without hesitation, been given Epi from that doctor! She had all the symptoms (not just TWO). But had I known then what I know now, things would have went a lot different that day. We spent 4 hours in that office while they monitored her oxygen.
That was the day I became Josie’s advocate. When I stopped trusting any and all doctors and what they had to say or prescribe. That was the day I turned into her hyper-vigilant, anxiety stricken mother. Her protector. Forever. This day changed both of our lives. It changed our family. It changed everything. Because little did I know then, that she’d be allergic to so much more…
Here is a photo of her before they sent us home. She was still very lethargic and red. But not nearly as red as she was when we got there 4 hours prior. She was full of vomit and completely exhausted. Josie was never one to cuddle up into my neck like that. But she was scared…this was the first for her.
(Side note: she totally looks like Juliette here, right?)
After that was all said and done, I scheduled allergy testing to be done. A swallow evaluation. A barium swallow, a GI consult. An EGD was recommended on my 10 month old (what????-absolutely not happening on my watch!), a nutritionist, a speech therapist and an allergy and immunology physician.
I was going into this blind. I had no idea what I was doing or what I was getting myself into. Most of these consults were a big waste of time. Until we discovered that her lack of eating/interest in food was basically because she knew it was poison to her. Smart girl. Terrible mommy. I should have known better. Especially to give 2 of the top 8 allergens together at once (for real, Stacy?!).
Just like today, when she was skin tested back then, her skin only took seconds to react. They didn’t even have to wait the full time to see if “maybe” there was a reaction. It was, without a doubt, positive. And this is what I posted on Facebook that day:
March 25, 2015:
“Sad momma here. My poor baby is allergic to dairy, eggs and casein (so far).”
And this journey and struggle continues. This was only the beginning. SO much more has happened since that day.
Screw you, food allergies!!!

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This is OUR Lifestyle…

The allergist in Austin a few weeks ago, told me that if Josie has open eczema sores (which she does) on her body then that is a mode of entrance for food/particles/teeny tiny molecules to enter. This was new to me! I’m constantly learning throughout this journey into what I like to call “tell someone you have an allergy child, and almost guarantee they cut you off as a friend.” (more on that later–but it’s true!). While I have a heart of compassion (I’m an RN), I cannot imagine distancing myself from someone simply because of a medical issue, especially if our kids play well together and seem to just bond on a level I never thought possible.

Since Josie has been diagnosed at 9-months-old, (she is now 3-years-old), my fear of life in general began. Fear of leaving the house. Fear of what’s on that shopping cart. Fear of her touching residue and then eating her own “safe food” and getting contact that way. The fear is always, always, always there. I hate…hate, HATE when friends, family or people I run into just tell me to relax. “It will be okay”. Or when I can’t see my kids at an event, they remind me that “she’s fine.” Right. Because THEY know the first signs and symptoms of a reaction, right? Most people don’t even know the emergency action plan. And most people are completely oblivious that a child with food allergies can die within two minutes if something isn’t done. Most have NO IDEA that just a particle of food can be deadly. Most blow it off as I AM THE PROBLEM. “Stacy is anxious.” “She is too much to handle”, “she worries all.the.time.” “she’s always hovering around her daughter.” “geez, when Josie gets sick, she acts like it’s the end of the world (as my daughters asthma is aggravated and she’s on breathing treatments, struggling to breathe.)” Well let me just say something. Something I’ve wanted to say for a while. Screw you! You have NO idea what I am going through! What I think daily. What my mind is going through. How the WORRY consumes me. And yes, it’s legitimate worry! You have no idea what it feels like to hold your lifeless, blue, gasping to get in just one breath of air child in your arms, while you pray on your knees for God to take you instead! You.have.no.idea! So don’t you DARE tell me that I’m too anxious. Or that you think I’m crazy. Or that I worry too much about MY daughter. If I didn’t look out for her, who would? My child is VERY lucky to have a mother who is so hyper-vigilant. She is SO lucky to have a mother that makes sure her house is clean from top to bottom and no crumbs or loose food particles are hanging around. Keeping her away from functions may suck now, but I’m saving her life, ya’ll! Why can’t people see that? I didn’t choose this! I didn’t ask for this! Neither did Josie! But I’ve so often seen friends come and go because of it. Because of me and because of her. Enough people have walked in and out of her life since she has been born. I can’t possibly handle more. And it’s just a tiny flash forward of how friends are going to walk in and out of her life and break her poor little heart. And that pisses me off!

I don’t claim to be perfect. I’m not even close. But you want to know what hurts? The lack of respect. The lack of just taking my word for it. Treat me like you understand. And if you don’t then piss off. Because I have enough battles to fight in my life right now, the last thing I need to do is justify to a grown adult why I am who I am today. Because I haven’t always been this way. Having children changes you dramatically (right??). Well imagine a child with a disease. An illness. A irreversible life threatening death sentence as easy as a crumb on a table. How would your life change? Would you develop sympathy and understanding for others who are going through the same? Would you hope that friends wouldn’t walk in and out of your life because you are terrified at every meeting, every outside environment, every place that is NOT home? Wouldn’t you hope to find a friend? A friend you can lean on? A friend to tell you “I may not understand, but I am here to listen mama.” Just like the two words, “I’m sorry”, those words have such an impact on me and Josie that you couldn’t possibly imagine the joy of finding the rare people who listen/talk/UNDERSTAND and most of all don’t JUDGE! This is me, ya’ll. I am Josie’s mom first. If you don’t like who I am, then don’t. But I have a good heart. I would do anything for those closest to me. When I love those in my life, I love them HARD. I’m a Cancer and that’s what Cancer’s do! I’m loyal and honest.

And also…family? Where the hell are you? Those who walk in and out of Josie’s life as if she never even mattered? Where the hell did you go? Do you realize she can die at any given moment? Is that what you want to live with? Swallow your damn pride and make yourself available in this child’s life. Because she is a beautiful soul! And you truly are missing out on one wonderful little human! Because when it’s too late, you’ll regret it. And you’ll have to live with that for the rest of your life. Don’t say I never told you so.

So Josie goes to OIT on August 14th. Anything could happen. And when I say anything, check out this story that made headline news just yesterday: Alabama Boy, 3, dies while getting treatment.

…this could be Josie, ya’ll. This boy had asthma, too. So does Josie! In fact, she’s sick right now. Sick with a common cold that all of us can tolerate, pull up our big girl panties and move on with our day. But Josie can’t. You see…her lungs can’t. They are forever inflamed/damaged (asthma). And a cold/virus just exacerbates it. Then she struggles to breathe. She can’t eat, drink or focus. Since not enough oxygen is making it’s way to her brain, she can’t even think straight. Luckily, she has me to know when to listen to her lungs with my stethoscope, give her a breathing treatment and notify the doctor. I monitor her. I don’t sleep. I sit up listening for a cough, a cry or a plea for “mama”. I am her saving grace from asthma and food allergies.

August 14th, we introduce her to dairy and egg. I.am.terrified. I couldn’t possibly live with myself if…the unthinkable.

AND DON’T TELL ME NOT TO THINK LIKE THAT! Again, you have NO IDEA! You would too! You HAVE to think like that. Because it’s realistic. You have to be prepared for the turn for the worse. You have to think of all “what ifs” so if or when that event arises, you can be prepared. I am a critical thinker and I have my career as an RN to thank for that. I’m not going to sit in la la land while I wait for this appointment and act as though she’s invincible. Because it’s clear she’s not (at least in MY experience).

Maybe those who cannot understand can YouTube “food allergic reactions” or “stridor” or “how to Epi your child and when they ingest food”. Maybe then you will get a first hand look at how terrifying it really is. How the complete and utter loss of control is among us moms and dads. Our entire world is struggling to breathe, begging for help from us and we are literally helpless. We can’t perform magic.

Josie now wears an allergy bracelet wherever we go. And she knows not to go anywhere without it on. And she can even tell you what she’s allergic to now.

I’m haunted by this recent story of this poor boy. And Bobby and I are terrified of Josie’s appointment. But do I sit back, shut my blinds and sit in fear? That’s a big huge world out there, people! She’s not always going to have me watching her every move…

So what do we do?

If you want to be a part of Josie’s life, I suggest you step up to the plate. This isn’t about you and I. This is about HER. Any day could be her last, my last or your last. How would YOU react? Would you even care?

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June 23, 1932 – A Beautiful Life Was Born

Gisela Else Hubel (1932-2017)

Gisela Else Hubel, 84 of Caseville, passed away peacefully Easter Sunday, April 16, 2017, at her home under the care of her family and Heartland Hospice, having suffered from COPD and Alzheimer’s. Gisela was born June 23, 1932, in Elbing, West Prussia, to the late Paul and Else (Gudtka) Bradtke, the second oldest of six children. In 1953, she met her future husband, Francis Hubel, while he was stationed in Germany as a soldier in the U.S. Army of Occupation. They were married Jan. 15, 1955, in Bremerhaven, Germany. They moved permanently from Garden City to Caseville in 1995. Gisela was a wonderful cook, the best mother and wife, and loved camping and walleye fishing. In her last years, she enjoyed riding around in her golf cart, going to the beach, and watching wildlife. She is survived by her loving husband, Francis J.; sons, Timothy of Pigeon and James (fiancee Denise Potchynok) of Flint Twp; grandchildren, Rachel Conrad and Dylan Hubel; great-grandchildren, Josey and Juliette; and siblings Doris Posner, Hanelore Fitz and Bernd Bradtke, all of Germany. She was preceded in death by her parents; sister, Inge Jessen and brother, Dieter Bradtke. A memorial service will be at 1 p.m. Saturday, April 22 at the Champagne Funeral Chapel of Caseville with Rev. Karen Bouverette officiating. Visitation will begin at 11 a.m. Saturday and continue until the time of the service. Condolences may be shared at www.cfcCaseville.com

Published in Huron Daily Tribune on Apr. 18, 2017

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…you’re probably wondering “where’s Stacy in this?”, right?

Well that’s the thing. Sadly, my selfish, self absorbed family left me out and included my children (although never meeting them and spelling their names wrong). Besides, I was her grandchild. She raised me when my parents didn’t/couldn’t. I learned so much from this woman and I was never able or allowed to tell her goodbye. No one let me. My heart still hurts and always will because of this (and I think that’s what they all wanted-except my Grandma). But was it what SHE wanted? Probably not. And that’s what saddens me. My Grandma dealt with a lot of my fathers issues for so many years leading to her death and the least he could have done was given her a drama free memorial about HER and not HIM. He can hate me, envy me, want me dead (so he says) and never want to speak to me again; but don’t steal someone else’s afterlife or chance to say goodbye to someone who was more a part parent then their own father was.

I have good memories of her. Barely anything bad. Nothing really much bad to think about, really. She was always on the go. Moving, cooking, baking, cleaning, organizing, and taking the time to enjoy her granddaughters. We were her world. We’d eat orange sherbet on the couch out of ice cream cones, play barbies in all her fake plants, steal shot glasses from their bar in the basement. We played pool at the pool table. The very one we’d wrap Christmas gifts on each year and set out all the food we spent the entire day preparing. We played on the swing set outside, ran through the sprinklers, rode our bikes up and down the street. And at night time my Grandma always had the BEST videos on tape for us to watch in bed. She did our hair, she let us wear her clothes, she did our makeup and she even let us sit at her vanity and play with her makeup and all those shades of red lipstick. I remember the weather channel was on the televsion 24/7 and she’d dry her laundry on the line outside. She even managed to go around cleaning empty apartments as a side job and taught us how to clean with her. I think of her all throughout my day. And I never noticed it until she was gone. When I use small knives to slice and dice. When I use a ziplock bags to put food in. When I make the taco bake she was so good at making. When I see my daughter playing in the sprinkler. When I decorate for the holidays. When I clean, cook and read books to my daughter. I miss her.

Although I wasn’t allowed to go to her memorial, I did write my very own thoughts to her via the internet (how 2017, right?). I know she can’t read it. Nor could she of heard me at her memorial had I stood up and said them (and I would have had I had the chance). But I speak out loud when I talk to her. And I find myself doing it daily. Or I hear her voice inside my head. I love that I have that memory. Sometimes I hear her jokingly say “goddamn it Francis!” and I just laugh. I’ll never forget that Cheeseburger festival when she kept saying it over and over again to the point we were all laughing so hard we could barely breathe. Then she peed her pants. She’d always buy us all Little Ceasars Pizza and go back and make a fire at the house. We sit around and sing old songs like we did as kids sitting around the campfire. As I grieve the loss of her, I am also grieving the loss of my Grandfather to whom I was very, very close with as a little girl. Grandpa was my everything. I’d help him decorate the house outside on Christmas by going through the strands of lights and finding the lights that didn’t work. I’d play musical instruments with him and even played Jingle Bells backwards! We really did! He always promised me he’d give me those bright yellow shoelaces if I’d ever stop biting my finger nails off. One Christmas he gave them to me. I still have them in a box next to my bed. I always preferred to ride the snow mobile with Grandpa. He was always the safest driver.

This hurts so bad to write but I know I need to. For the sake of being able to look back and know exactly how I felt that day. The day she left us all. And the day I lost them both.

May 9, 2017:

“Dear Gram: I can’t stop thinking about you. I talk to you. I hope you hear me. I hope you remember me saving your life that time when you were in the hospital. You taught me how to cook and clean and how to take care of my husband and family. I think about you in everything I do. The way I clean, the way I cook and the way I celebrate holidays with my children. You gave me memories that can never be taken from me. You are an inspiration and a role model. Easter was very near and dear to my heart because of you. You made every holiday special. You always thought about everyone else. You were so strong to leave your family behind to start a new one in USA. You were the BEST Grandma a little girl could ask for. Thank you for the memories and the ongoing traditions I will pass to my daughters. I promise to tell them about you. I miss you so much some days it hurts. I miss you when I make hot dog soup or turkey for Thanksgiving. Or when I see deer and think “turn around, it’s the law!”. Thank you so much for loving me and for being the parent I never had growing up. May you be in peace and pain free. I can’t wait to see you again one day. I love you Gram. I know in my heart that you know that.

The other day Josie and I were driving and all of a sudden she says “reindeer!” “reindeer, mama!!” and at first I was like what? Deer? In hot Houston?! I said in my head, “turn around, it’s the law” and so I did. And sure enough there they were…a whole bunch of deer just sitting in the grass looking at us. I stopped the car and said “is that you Gram? Are you talking to me?” I left with tears in my eyes and my three-year-old was so happy she saw deer. Oh boy, I remember that feeling. It was as if time was frozen and I had a flash back to that day when I said that. How awesome it was to see all those deer when I was a little girl.
Most recently I kept telling myself that for if I see a hummingbird I will know you’re speaking to me. Strangely enough, I was having a rough day at work, in tears and telling a co-worker how tough my day was. In the midst of telling her, I glanced behind her and saw a photo…a photo of a hummingbird. I stopped what I was saying and told her “forget it. I’m okay.” Right then and there I heard you Gram, you told me it was going to be okay.
April 16, 2017…This day will forever be remembered as the day I lost my father (for good), my grandpa, my grandma (RIP) and my sister.
Today is June 23rd…Happy Birthday Gram. I love you.

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