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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Josie’s Journey into OIT: Day 1-The Consultation

Today we had our consultation with (another) new allergist for Josie…

It was a 4 hour drive (technically 3 hours) to Austin from Houston…

But after two diaper blowouts in the carseat, several pee stops for Josie and getting gas and coffee, we finally made it. Everyone was a little over it before it even began. It was a long ride.

My nerves are shot. My girl screamed through getting her weight, height and VS (absolutely refused). The doctor was very kind and patient and spent over an hour with us as I cried on and off about a plan and how much guilt I have from her allergies and near death reactions. We are set to start OIT August 14th. I’m totally freaking out. I am so happy with this doctor, but I am absolutely terrified and anxious for the pending thought of actually doing this. I don’t know how I’m going to rest easy up until this day. I need a good distraction. So friends that are local, please help me with this. Y’all that know me, KNOW I’m anxious all the time. But I REALLY need y’all more then ever right now. I’m afraid I’m going to talk myself out of doing this because of my own fears and panic.

THE PLAN: We are doing BOTH egg and dairy at once. The younger in age, the better outcomes. It’s just getting this girl to cooperate and stick to the plan that will be the challenge. How on Earth am I going to get a toddler who hates food to eat this dose for me daily?

BAD NEWS: He did say how much he’s concerned about her numbers. And said numerous times that “her numbers are high. Really high” 😢. But he has a good feeling about this and I’m going to try my best to trust him with my baby.

The first appointment is at 8am. It’s a 6 hour appointment. The waking up early, the drive and the time spent is just a teeny tiny sacrifice we’re willing to make to help our girl.

Let’s remember: THIS IS NOT A CURE. Especially with her numbers, this only helps her NOT to develop an anaphylactic reaction and/or to (in hopes) desensitize her from these foods. But the catch? She’d have to eat them every single day for the rest of her life to maintain that desensitization. Eventually she’d be able to eat these foods but not in high doses like mama can eat an entire cake in one sitting. 😂 (I’m trying to be funny here although I feel like crying). I just want my girl to have the peace of mind that time is on her side if she ever bites into that food.

The plan to tackle peanuts and tree nuts is down the road. Those levels are just too high. And dairy and egg are in everything! I think it’s smart to start there.

WHAT TO EXPECT: This process of desensitization, can take anywhere from 6-12+ months JUST to be able to bite and not react. And all the work is on me. I have to make sure she stays on her doses and sticks to her regimen. And y’all know how I am with regimens. If I’m good at anything, it’s that.

We will travel to Austin every two weeks (to up-dose). At that appointment, they will give her an increase from the two weeks prior but ONLY if I’ve given her the allergen in that small dose at home every day (full 14 days) leading up to that next up-dose (increase in allergen).

I can’t believe we are doing this y’all! I can’t believe it!

I know so many people will ask. And so many have reached out with good vibes and prayers. I appreciate you all. Thank you to those who’ve reached out and those continuing to pray for our Josie girl. I have a good feeling she’s going to be in good hands. And we are both willing to do anything to get this to work.

We’d like to track our journey. And when I say “our”, it’s because it’s not just Josie’s. Although the end result is for her to have a more normal life but also for her to have a more normal mom. I can admit that I had anxiety before kids. But after kids it got worse. But then having an allergy child made it 100x worse. So if she can get well, then so can I. We can both breathe together. I have faith this doctor is going to one day give us all what we’ve been waiting for. This is all in God’s hands.

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