Earlier I posted a picture of my daughter’s urticaria aka hives on Instagram. It’s not my usual funny faces, nature and random acts of silly I put out there but there was a reason. I got some amazing feedback and a couple people who thought it was wrong I posted it because it made them uncomfortable.
I get that… it makes her uncomfortable too.
It was a mild reaction, thankfully. When I picked up my daughter from school she was her usual happy, brave and optomistic self but I can always see that look of fear behind it all. When the benadryl kicks in her stress levels (and mine) drop. The school secretary always compliments us on how amazing she handles these hurdles. That means the world to me.
These situations are not easy in the slightest. As much as I am freaking out on the inside I deal with it all very matter of fact, with a smile on my face and try to keep her calm. A reaction can go from okay to really bad quickly and we have to be able to deal with it as it comes. Not a situation where I should be losing my shit.
Seriously, I want to run around screaming – freaking out – yelling and fall apart. Hives can turn into anaphylaxis shock and she could die from it. However, I have to be cool. I wasn’t this time. As soon as we got in the car I started crying. She isn’t used to that. I knew she was okay at that point and I explained I was just mostly sad for her. She hasn’t been doing well lately and right when we had a couple of weeks of being on the seemingly upswing this came out of nowhere.
To quote Rory “Pond” from Doctor Who: “Oh god, I was going to be cool. I wanted to be cool. Look at me.”
I actually said that and it made her laugh and broke my moment of uncoolness. I’m so thankful that my daughter loves Doctor Who. She even said “Hey! That is what Rory said in a Good Man Goes to War!” (I am so proud)
She has idiopathic chronic urticaria which basically means she gets hives constantly often from an unknown and unexplanable source… sometimes.
She also has life threatening food allergies, mild arthritis and an autoimmune disease.
Yet, she is the happiest kid you will ever meet and stronger than most adults I know.
When she gets a reaction a few things go through my head. First – is it going to be an anaphylactic reaction? What caused it? How is she feeling emotionally and physically?
We discuss what happened or what may have caused it. I take notes, pictures and write down any pertinent information. We decide what needs to be changed if anything. Then we find a way to distract from the moment while her medicines kick in. If it was a severe reaction we would be off to the emergency room…
Thankfully, it rarely comes to that since we have control over what we can.
But, there is always that wild care with the idiopathic chronic urticaria. We just have to make the most of what we can.
When she had the reaction this week and took the picture for our records she asked me if I would share it online. I hesitated. She explained that most people don’t understand what she goes through until they see it. She knows that I explain what she goes through but it’s different if you see it. She compared it to “reading novels” compared to comic “graphic novels” and how what you picture in your head may not be the way the writer intended.
My ten year old girl is wise beyond her years.
Anytime I talk about her health on my blog she gets full editing rights. She has reached an age where she is taking a big step towards advocating for kids who feel a little different. She is brave, strong and loving… I’m now in a position where I guide her through this and heed caution when needed. It’s honestly beautiful. I sincerely hope that sharing these low moments are insightful. When we share the good moments that we grasp I hope they are inspiring.
Either way… thank you all for being a part of our world of madness.
I am writing an e-book about food allergies (there will be a few of them because it’s a lot to cover) and she is now a big part of the process. It’s always had to do with her story and our struggles but she is giving me so much insight and perspective from her point of view. I love that I can include that.
About Leila DontSpeakWhinese
Leila, aka The Ninja, is the advocate for all things not whining. Parenting is fun when everyone stops b*tching! She is the Mom of a big blended family of four awesome kids. They ninja kick through life together. Oh and she is a total jackass.