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. 

Cup of Coffee for my Asthmatic Child

This morning I woke up to find that my six year old boy had gotten the coffee ready for us (him and me). He didn't fly solo though, he took instructions from his dad and followed them to a T. He measured and poured the water, scooped four tablespoons of grounds into the fresh filter and had it all ready so all I had to do was flip the switch when I came downstairs. My sweet boy hadn't done that yet because he wanted to wait for me. 

He started drinking coffee around age two. Calm yourself... It is only half a cup, once a day and has hazelnut or french vanilla liquid creamer added to it. How it all started, you ask? One morning way back when, he wanted a sip of what his mommy was drinking. I gave him some and he wanted more. While most people would have said "NO," I said "sure!" 

I had heard that coffee can be beneficial to anyone with asthma and that children under the age of twelve can experience an opposite effect to caffeine and Benadryl. How caffeine effects him is hard to say. I wouldn't say he is any more wild because of it. On the other hand, we have noticed that when we've given him Benadryl, which knocks me out cold, he becomes absurdly hyper. But that's a topic for another time. Anyway, you can see I had given the caffeine and coffee quite a bit of thought before he ever asked and I agreed. 

I did some further research on caffeine before I let coffee become our little ritual and as it turns out, coffee is indeed good for the airways. It can never replace a prescribed maintenance medication but it can give a little extra help for the lungs, especially when asthmatic symptoms flare-up. LIVESTRONG had a good article describing the beneficial effects of caffeine on asthmatics.

Now, Calvin was diagnosed with asthma at the tiny age of five months old and he has earned the status of “SEVERE” asthma on his medical file. There is nothing regular about his case and never has been. I knew in the early stages of his infancy there was something not quite right about his breathing. He would grunt a lot, choked on milk at almost every feeding and he wouldn’t take a pacifier or his thumb. He slept best at an incline on my chest or in his vibrating seat. He was constantly getting colds that would turn into pneumonia, turning into hospitalizations. Getting a doctor to listen was next to impossible, that is until he almost died from a bad case of pneumonia. 

Being a parent to a child with asthma is more than hard. The fact that I found something to make it a tiny bit easier is magic. I share a cup of coffee with my boy almost every morning. It's our special time, our thing, just my baby boy and me. It smells good, tastes good, it's warm and helps him without being an expensive-toxic-chemically-enhanced pill, a cumbersome breathing machine, or inhaler. In fact our favorite place to go together, our happy place, is Caribou Coffee. This isn't normal, I am fully aware of that. I would never dream of giving my healthy daughter coffee. However, our life has never been nor will ever be "normal" when asthma is star of the show. 

Ultimately, Calvin loves coffee and I know it benefits his condition. I will gladly supplement my child’s asthma regiment with coffee any day than have to use the rescue meds more frequently. Some people shake their head at me but I shake my head back. To these people I say... you don't know me or my child, or what we’ve gone through. You haven’t been there when harsher forms of treatment are used. When I’ve had to watch every limb of my child’s body shake. When I’ve had to try and tame the wild beast on an ADHD+PMS like roller-coaster, who used to be my sweet child. When I’ve held him helplessly in my arms and felt his heart pounding so fast it seemed as if it were going to explode. Then dealing with the aftermath of using a systemic steroid, seeing how it weakens the immune system so for months out he is sick with illness after illness. 

What I have described are the side effects of using rescue meds like Albuterol and Orapred (systemic steroid). Yes I use them when I have to and I’m grateful for them, BUT only when they are absolutely necessary. If I can get away with managing his asthma on a low dose of Flovent (an inhaled steroid maintenance medication), a dose of Singulair and some coffee, well then, I consider us lucky. 

If you take anything away from this post, it should be... When you have an asthmatic child, giving them a small cup of flavored coffee is a treat, as well as a treatment. People argue that caffeine is harmful to children. I argue that the drugs, the steroids in particular are of much greater harm than a little caffeine could ever be.