Reflection

My daughter has a “disease”…FOOD ALLERGIES. But that doesn’t make her disabled. That doesn’t mean that we can’t be around people or have people visit us. It doesn’t mean we don’t want to be invited! It doesn’t mean that people have to be scared to come over to our home and play with her. Or have people visit with food. This just means we (her parents) need to be careful. This just means that me, her mother, will be a little more watchful of her when we go places and pay less attention to conversation (my apologies-I may look like I have ADD). It means I’ll have to learn to multi-task. It doesn’t mean that her life is restricted from living it normally like all others without food allergies do. We are learning to LIVE WITH IT! It just means her mom will be anxious, so get used to it. This is the new me…the permanent me. I’m not going to change. It doesn’t mean that I’m not a good friend or fun to hang out with. It just means my senses will be heightened and you may not be used to that. I may be listening to you but staring at my child. It just means that I love my child more then anything in this world and she is NUMBER ONE in everything I decide to do and everywhere I decide to go. Josie is an amazing, fun, loving, sociable, full-of-life little girl. And if you know her, YOU KNOW THAT! And she plays well with EVERYONE, of all ages. She loves to laugh and sing. Dance and dress up. She’s a normal little girl, who loves to play with her friends. Please don’t exclude her because of her food allergies. Trust me when I say that I am always prepared and ready to jump into action if needed. You cannot possibly imagine how my mind spins 24/7 with worry. But more than ever before, it’s now the time to let go just a little bit and it’s time for me to realize that THIS is our life. It is not going to change. THIS is how it will be. THIS is how we are going to have to make it work. I have NO control over curing her. But what I can do is give her the most normal life possible without making her feel left out. I won’t make her feel left out anymore. I won’t keep her home because of MY worry. She’s getting older and starting to realize it. She senses my anxiety, stress and worry. And I can’t help but say shame on me for allowing her to see that. Now I realize that for her sake, I need to step away and find a way to worry without showing her. She’s a smart little girl! So day by day I will give her a little bit more independence…but I’ll never, ever stop hovering. That’s the mother I will always be for Josie. I was meant to be her mom.

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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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It’s Too Hot to be Inside…

But it’s too hard to handle this toddler outside on my own while I’m 33 weeks pregnant and told to “rest” and “don’t do anything”. It’s so much easier said than done. Especially when you’re chasing a toddler around who must have her way or the world is completely and utterly over. I’m uncomfortably pregnant and over it. I’m over the horrible sleep. I’m over the lack of energy. I’m over being tired. I’m seriously over being pregnant. And I’d be perfectly okay if this was the last pregnancy I’ve had to go through. Terrible twos are so much harder than I imagined. And Bobby being away for several weeks at a time while I handle this all on my own is much more difficult. Now just add an infant in four weeks…oh Lord, please help me.

Well anyways, we’ve been getting her outside as much as we can. It’s hot out here, guys! It’s like 100 degree everyday and some days it feels even hotter.

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