The Monster Stirs

Another sleepless night. I've had more of these than I care to think about. It begins with one little cough and the monster stirs. 

I hear it. I hear that cough. My stomach turns, my heart stops and fear invades my mind. Calvin has a virus. The coughing fits began while he was trying to fall asleep last night. We started the cool mist humidifier and Vicks Vaporized his chest. Propped him up on pillows and hoped for the best... which at this stage in the game, is quite frankly, stupid. We've dealt with this monster for six years now. Hoping for an easy virus when your child has asthma is like hoping poop won't smell. In those six years, sure we've had some milder colds but none so mild as that of a normal child. 

Ariauna was angry this morning when she found out her brother would be staying home from school because he's sick. She knows what's coming and doesn't like it any more than the rest of us do. There will be no playing at the park after school for a couple of weeks, the fun times will be limited. She knows Calvin will get a lot of attention and herself very little. I get the question again, "why does he get sick all the time?" I explain it again, while trying to comfort her. I hate what this monster does to him, to her, to our family. 

We all know what an illness will do and we feebly hope it will take two weeks instead of three. I hope for four hours of sleep at a time instead of one or two. I hope for no steroids, no barfing, no pneumonia, no hospital. I beat myself up asking, how did this happen, what did we miss, what did we do wrong, what can we do better? How much it disrupts our life makes me angry. I want normal. I want fair. 

Most people are fooled by Calvin's appearance. He can seem so normal, healthy and just fine. But you don't know what goes on behind the scenes to make this happen. You are also unaware of what occurs when he does crash, when the monster is awakened because our family will disappear into our home for weeks on end. A so-called bubble is formed and we're very careful. We fight to get the monster stable. Once that's done, then we spend time giving his body a chance to recover before we throw him back in the cesspool of germs, or he's bound to catch another virus immediately. 

I have turned into someone I don't like. Panic, anger, sadness and frustration set in all too quickly. I have become the hand washing nazi and a germaphobe. If we're out and about, and I see someone with the sniffles, hear them cough or hear that they are ill with something, I feel the rage welling up inside me as I take Calvin and run.

Normal families are rarely bothered by an illness. Their normal child will get a virus, it will run it's course with minor symptoms and will not last for weeks on end. They think nothing of bringing their sniffling child anywhere and why should they. To them, it's a runny nose but to me it's a looming threat of pneumonia. Few can relate, even the closest of family has a hard time grasping the severity of something so small as a runny nose. Not even when I describe to them in detail just how awful an illness with Calvin can be. I don't think it's mentally possible for other people to fully understand until they themselves have a child struggling with asthma. We are all too often alone and isolated with this monster. 

Sometimes it gets the better of me and I foolishly wonder how different our life would be if my child had a set of normal lungs. Simple play dates, birthday parties, school, church, any kind of outing would be what it's supposed to be, normal and/or fun. Instead I look for potential hazards and curse a slip of an unwashed finger in the mouth. I have to keep strict rules, like no sharing drinks or food. Wash, wash and wash your hands. Keep your fingers away from your mucous membranes, the eyes, nose and mouth. Is it fair they should have to care so much about germs, about their mucous membranes?

I used to think that I had to be especially careful during flu season but during a recent visit with Calvin's Specialist it dawned on me there is no such thing. The Specialist was saying how we're not going to try wean him off any meds because flu season is upon us. I told him I don't believe in that anymore. I think it shocked him a little. I said it doesn't matter what time of year it is, if you check the charts Calvin has been sick with serious illnesses Winter, Spring, Summer and Fall. The flu season (October-April) has not applied to my child. I also wanted to blurt out my lack of hope for ever weaning him to a lower dose of meds. Why? We've tried this many times, only to find that we can't. Dosages have only ever been increased. But I refrained from showing just how much faith I have lost in them (them being doctors). 

Asthma is a monster. We've had to adjust our lives around it and live with it. Taking every step we can to manage and control this unstable creature. We sedate it with medication, but every so often, the bad fairies (the germs) sneak in and wake the monster with powers of an ugly kind. So, our battle continues. We keep trying new things and do the best we can, hoping one day this monster will leave. Puberty is now the new age, in which the doctors think Calvin will outgrow this. It used to be age five, but that has passed us by. I long for the day I can think of "normal" as a gift to be cherished.