So let's look at concerns. Surprisingly, anyone who brings up there concerns only has one. For people just learning about CU, there concern is me being a parent. They don't understand why we haven't just moved to Florida or California and think we are horrible parents. What they don't realize, is that the doctors have told us moving there would not be good for our daughter due to air conditioning, it would be the worst thing to do for her. For school officials, it's the temperature restrictions and what problems they will cause with attendance. First, living in Colorado, I think 15 days during the cold months per quarter is pretty good, that's what we had last year. 15 days starting at the end of October through the end of December. This time included the artic front that moved in in November, with temps including zero degrees Fahrenheit as a high. Another 15 days from January to March, which can be extremely cold. Those 15 days encompass sickness, doctors appointments, recovery from major reactions and cold temperatures. 15 days out of 90 doesn't seem to bad to me, I mean it could be worse...right. What people don't realize, and it's a shocker, is that I share there only concern, getting them to a safer place ( but where???) and attendance, but I have so many other concerns that you really are just pissing me off when you won't let it go and bring it up every single time I see you. Besides attendance, and wondering where that perfect place is to take them, I, as the parent worry if one of my children will have an anaphylactic reaction that day and will the person in charge recognize or acknowledge it because most people don't believe in the condition. I worry about the jitters my kids have when they can go back to school after an extended period of absences due to weather, I worry about their friends leaving them behind, grades slipping, will their grades and understanding be good enough for college. My heart breaks when I go through papers in their binders and find notes from classmates telling them they should just drop out of school or homeschool. I wonder how I am going to get to the grocery store if I need to when a cold snap lingers longer than it was supposed to, how I will get them to the doctor when they are sick in freezing temperatures and if it will set off anaphylaxis. I worry about the lonliness that they have during winter and the toll it takes on them. I worry about their confidence, the jerk comments made to them from classmates, strangers, and adults who should know better. Hospital staff who, which thankfully has been vary few, have not believed in it and made reactions worse. The affect that the antihistamines take on their teeth, and will they end up in dental surgery again or borderline septic again. I worry if there will be another surprise, like what antihistamines do to dental health, that I am unaware of and at any given moment will some other health crisis hit because I don't know to watch out for it. I send myself on a guilt trip when those health crisis' hit, because according to me, I should have known, not sure how, but I should have. I worry about getting that phone call, saying one of them has been rushed to the emergency room for anaphylaxis and I'm not there, the fear they must feel and wonder where mommy is. I worry that if they feel a reaction or anaphylaxis coming on, will they ask for help? If they do ask for help, will the adult blow it off or jump into action. Most of all I worry about what the doctor said 2 years ago. "If we don't get this under control, my fear is your son won't survive Cold Urticaria." SO I wonder some days if that's the last hug, kiss, or I love you mom, that I will ever get. If you were to open up a conversation, you would know this. But you don't and have no idea my worries. So take your one and only concern and quite frankly, shove it.
Now, most people aren't just content to try and shove their only concern down parent's throats but now they want to tell us how to deal with the condition as well. Just like concerns, there are only a few pieces of advice people give. For Cold Urticaria, the first is move. Golly Jee willikers, that is soooo smart. I already covered a little bit of why that really isn't going to work, but here is the rest. The doctors have told us to travel the world for roughly 2 years and find a place that is o.k for both kids. Can you help me afford that? Do you want to help tutor the kids while we travel. Can you help line up jobs and healthcare while we are there for six months at a time? One doctor said southern France in his opinion would be good. Can you help get us there for a trial period? If it doesn't work can you help bring us back, get our house and jobs back? Then help us try again in a different location? Second, bundle them up. Umm, yeah, no. While you think this would work, because you are the smartest out there, no amount of clothes and face masks will stop the cold. It isn't just cold on their skin that causes reactions, breathing the cold air does too. SUPRISE! Lastly, I had someone email me one time. This total stranger had some keyboard courage, chewed me out for not moving, and left with this totally educated idea. Maybe if I let the kids play in the snow more there body would learn to handle cold. I can actually understand this thought. They are doing it so much with food allergies these days and it works for some. The only problem is that while Cold Urticaria is easiest to explain as an allergy to cold due to the reactions it causes, it's not an allergy. It is a full blown auto-immune disease. But you would know all of this if you had bothered to ask questions before you try to be Super Parent and save our kids when you don't have the slightest idea about what their condition entails. Please take your advice, and put them with your concerns.
This is what parents whose children have medical issues deal with every day. Every single day. People who have no idea trying to interject or make it sound like they are the only ones concerned for our children. Your only concern pales in comparison to our many. Your unwanted advice and pressuring us to ignore doctors orders because you know best shows your ignorance and leads us to brand you as a lunatic. Mental notes are made that you will never watch our kids, and if our children are friends, there is a high probability that play dates will be done at our house and 100% of sleep overs will be done at our home as well. The sad thing is we want to talk to you. We welcome when someone comes up to us and starts asking questions so they can understand. Personally I don't care if you do it 100 days in a row. I welcome it! After the conversation has opened up I guarantee that you will hear among my many concerns, the same one that you were going to preach to me about. You will also hear how that sparkling piece of advice that you were going to give, not only have we heard it 100 times just today, but we have tried it, and what the result was. You will find that we aren't as oblivious as you think, we just accept facts, move on, and do our best to keep our little one's spirits up because to us, it's become normal. It doesn't do any good for them if we just cry around all day and act like life is over. You will also find that those jokes your hear us tell them, you know...the one that you judged us on, was a way to get them to laugh after a horrible experience and it's now code to let us know they are scared without having to say those words. It gives them a little power back. All of this information will not be learned in one conversation, it will take a lot of them. That's how you will get into the inner circle, where you can offer advice, and talk about concerns. Until then, I and most other parents seriously Do. Not. Want. To. Hear. It.