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?
I guess I should say allergies SUCK! And so does asthma!
So I know I haven’t said much about what has happened to our sweet Josie on this blog (in the past). I have promised an update or story but never really did it. It was too hard for me to travel back down that road and re-live the events that occurred. It was emotional and terrifying. But most recently (a few days ago), we had her retested and this was my update:
At 9 months old she had an allergic reaction to diary and eggs. And days away from her 2nd birthday, she had an anaphylactic reaction to dates and cashews (tree nuts). I almost lost her that day (I’ll always and forever be grateful for the love and friendship of Shantel Brock-you are an Angel). While her lifeless body lay in the hospital bed and her lips blue and her lungs trying to pull in all the air they could, I lost myself that day. Since that moment, I’ve never been the same. I’m scared at every given moment. No one TRULY understands. It’s painful. Not only does she suffer, but I do too. I always try to get out with other moms to get Josie to play with others but most people don’t know that I suffer in silence. I worry. My anxiety has turned into panic attacks. I make myself sick. I worry about too many kids with too many food items and not being able to watch her every move. It’s literally drove me insane. To the point where now I am seeking help to be the best mother to her. Because that’s all I want. I want to be normal, too. I try to stay strong for her. It’s hard. And no one can tell me anything that will make me feel better. Only a parent of a child with allergies can explain or relate to the never-ending fear that lives inside. The nightmares. The “what ifs” that seems totally ridiculous (to most people). Well, my little girl got blood tested after her near death experience and PICU at children’s hospital (over a year ago). And the results were shocking. Almost unbelievable. And here we are, more than a year later with high hopes that maybe, just maybe something has gotten better. Maybe something she was able to out grow. I finally found her a fantastic allergist. Who sat with me today for 4 hours ya’ll! 4 HOURS!!!! Why? Well, here’s the story: I made the appointment because my sweet girl starts school in August (Pre-K). And also because I’m tired of harboring her from play dates. I make up excuses but never want to blame it on her allergies. Really, it’s my worry (is what I keep telling myself). I just want her to get out more! The allergist and I sat there and talked about blood vs. skin testing. Skin testing is much more able to tell you the truth rather then false positives. Her blood work could have very well had some false positives. The doctor and I were positive and sure that that was the case. She asked me if I wanted the “tree nuts mix” or each separate nut tested on her skin. I asked for each separate. We tested, dairy, egg, tree nuts (all), peanut and chicken via skin test. Prior to this we were both so excited that she may be able to try COOKED dairy and egg (it changes the protein), and she may eventually out grow this. Skin test usually take about 20 minutes to react. Josie’s took 20 SECONDS! Yup…you read that right! 20 seconds! My poor girl came back positive then ever to all the allergens that she once tested positive to. Only this time it was actually worse. The doctor lost hope at that point. Her face said a thousand words. Her voice changed. She seemed truly concerned. I asked if we had to go to the ER? Was it THAT bad? She said it was pretty bad but we would keep an eye on her, give her benadryl and all that we spoke of earlier was out the window. No cooked dairy or egg. No trials. No reintroducing foods. She even mentioned that the likihood of her outgrowing this is not likely and won’t be tested again until she’s 5 years old. My heart sank. I can’t help but feel immense guilt. What did I do to her? Why? What happened? I made her, why can’t I fix her? I tried to keep my composure so Josie wouldn’t read my emotions and get even more scared. The doctor knew it was happening…I lost it. If I could do ONE thing in this world it would be to take THIS away from her and give it to myself. I’d do anything to make this go away. So the entire point of this post? Well, because some people don’t take Josie’s allergies seriously. THIS FOOD IS POSION FOR HER! It’s immediate and it’s DEADLY! IT IS POSION! IT CAN AND WILL KILL HER! And I hate when people say “oh just a little tiny bit won’t hurt.” Or they let their kid sip on my kids cup (well, your kid just ate a cookie that contains eggs/dairy, whatever else). People don’t realize the seriousness of contamination. Did you know that when I almost lost her more then a year ago, she ate a teeny, tiny bite of a Lara Bar (dates and cashews)? Tenny tiny! That’s all it took. Seconds went by and BAM…ambulance, ER, PICU and almost intubation. FAMILY, FRIENDS: PLEASE, PLEASE, PLEASE take this serious. I can’t bear the thought of anything happening to my baby as long as I’m living on this Earth. I NEED you to understand the seriousness! I NEED you to respect my wishes. Understand why I clean like I have OCD! Because there ARE allergens in our home. THIS is why I have a hard time getting out. THIS is why I have a hard time meeting other moms and getting my child to play with others. She’s a great kid! She’s super sweet and smart and LOVES to play with other kids. I just don’t want to be the mom that looks like I’m crazy, or hovering or nuts. The PTSD from almost losing her was and has been hard on me. The nightmares still happen. It could be why my panic attacks are at night, randomly. I wake up crying some nights re-living that event. The images just don’t go away. So although I’d LOVE to meet up and have my kid play with a ton of other kids. I just can’t because of me. I’m grateful to the friends and family who understand. Who truly know that one teeny tiny bite can kill her. Who respect my “craziness” and know I’m not insane. I love my daughter. And without her, there’s no me. Everything I do and don’t do is for her (them). Below are the pictures from today. They are heartbreaking. They are scary. They are what they are. My girl is happy and healthy. What she eats, is all she knows. She doesn’t eat junk. She’s doesn’t live off fast food, she just eats to live…she doesn’t live to eat. We live in a society where eating is all part of socializing. So with me having celiac disease and Josie’s food allergies, we don’t get out much. And it’s sorta depressing at times. It’s a lot of work to leave the house to go somewhere. I always worry about what she will eat…what I will eat…it really IS exhausting. So this is the truth ya’ll. THIS is why I am who I am. Josie NEEDS a mom like me who is hypervigiliant. I am her mother and her advocate. Please understand…my daughters life is priceless to me.
***The top left is PEANUT. The bottom left is CASHEW (what she had a reaction to in the Lara Bar a year ago). To the right is Chicken, Egg and Milk (top to bottom).
After thinking about this for the past several days/nights, I’ve determined that I’m not stopping here. We are going to see another allergist next Thursday. I want more done. More testing. Most opinions. I can’t stop and won’t stop at “well, we will re-test her again when she is 5-years-old.” At first that was okay. But the more I think about it…no! I am not done! What can we do?! There has to be more! I want blood work done. I want it all. I want her asthma reassessed. People seem scared to touch her. Tell me what to do-I’ll do it!