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:
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?