Asthma

As most of you are aware, Banshee struggles with respiratory issues. In the past 4.5 years I've learned A LOT about asthma, respiratory treatments; ER visits; hospitalizations; medications; steroids; CF (cystic fibrosis) and a myriad of other terrible respiratory diseases. I've also learned that the medical system isn't always what it's cracked up to be, and have learned to become my daughters advocate. The past several years have NOT been easy for any of us, and the road is still long and complicated for us.

Most of the time I really do try to put on a smile and go with the flow. I can't change the fact that my baby girl is suffering from a chronic disease, but the reality is, I'm scared.

To be honest, I'm terrified.

And angry.

I'm angry that she's never known life without puffers; steroids; trips to the ER; hospitalizations; pokes and prods; testing; trips to the specialist; trips to the Children's hospital. I'm angry and sad that she can't seem to live life to the fullest. I'm angry and frustated that she never *just* gets a cold - that it's an event that always sends us sailing to the ER for breathing treatments. She can't go outside when it's bitterly cold, or when it's hot and humid because that triggers an attack. She can't get excited or upset without triggering an attack. She can't play aggressively or participate in sports without either taking 2 'preventative' puffs BEFORE she starts, or else she has an attack. She can't have a cat or a dog; nor can she go to a friends house with either of those around or else she pays for it dearly later on. This won't ever change . . . this is a disease that will follow her for the rest of her life, and will require daily medication.

I'm afraid for her when she goes off to school . . . that they won't be able to catch an attack soon enough; I'm afraid to send her off to daycamp in the summer (even though she desperately wants to go); I'm terrified of the what-ifs for when she is older and out in this big bad world alone. I realize that my job NOW is to teach her the importance of the medications and to make it second nature to her, but I also know that she's stubborn, and gets frustrated and angry with it all, and I could see her not taking her meds - just because she wants to be like everyone else.

Prior to all this starting with Banshee, I really had no experience with this disease whatsoever. It's been deemed that I most likely have a mild form of asthma, likely from exposure to second-hand smoke as a child (after my last bout of pneumonia in the spring, they did a follow up xray and said that my lungs are a bit messy for being 'healthy' - they even asked if I had been a moderate smoker), but it's not anything that has ever been treated, aside from the need to use puffers during illness (every cold seems to quickly turn into bronchitis and pneumonia). Now, sadly, I'm somewhat of a pro. While I'm glad that we are aggressively treating this disease, part of me bears a lot of guilt. Was there something that *I* did to make this happen to her? As a young adult, I was exposed to TB. While I was followed/monitored closely by the medical world for ages afterwards, and nothing came of it for me, there was concern that I perhaps had become a carrier of it and maybe passed it along to Banshee during my pregnancy. Because of that, Banshee was aggressively tested for it, and her blood was tested to make sure that the titres from the infant immunization shots were present. Thankfully they were. Sometimes I wonder if all this medical intervention is doing more harm than good, but in my own mind, I can't take the risk of changing anything. If she even misses ONE dose of her daily medications, we know it because she struggles.

We have had to make HUGE adjustments in our lives to accomodate this disease. We removed the carpets from the house; we removed pretty much all curtains from the house (with the exception of 2 sets - but I can readily remove and wash those - and they are not in her sleeping space); we need to limit/eliminate exposure to dogs and cats; we have to make sure that we don't use wood heat in our home - or visit a home that uses wood heat. I wash her sheets and blankets daily, and put her pillows and stuffed toys (we eliminated most of those too - but she kept some) in the dryer every couple of days. I vacuum her mattress and wipe her walls every couple of days. The other days, I dust with a cloth to pick up any excess dust. We barely ever open the windows in the house, and if we do, we close her bedroom door and NEVER, EVER open her window in her room. We can't hang clothes on the line (too much risk of pollen or other allergens getting caught up in it). In the warmer months, we run the a/c pretty much 24/7. The thing is . . . we'd do anything to help make sure that she's comfortable.

Last week Banshee went to see the specialist for a routine check up. It was decided then that she should be admitted to hospital for observation and testing. It brought back an awful lot of the memories that I've tried to repress from the past couple of years . . . the almost paralyzing fear of thinking that she might have had CF (numerous times she's been tested for this . . . 'regular' or typical forms, and more recently 'rare' forms); or lung cancer; or TB; or many other diseases. Thus far, everything they've ever tested for has come back negative (thankfully!), but the reality is, she has a severe form of this disease, and the fact that typical preventative meds don't control it tells us that there is some sort of underlying issue causing the asthma to be so volatile. There aren't any known allergies, which most often is the case - asthma and allergies often go hand in hand. She's been tested for numerous things . . . although we are heading out for yet another round of allergy testing in the upcoming months. The thing is . . . the specialists all feel that there is something that they're missing - but they can't figure out what.

For me . . . Mommy-gut is telling me there is something going on as well. I've been uneasy and unsettled about this from the get go, and now that we're getting more aggressive about testing and monitoring, that lump in my gut is growing. UGH.

I'm thankful that I have my family and friends to talk to about this because if not, it would consume my life, and that of course would NOT be beneficial to Banshee in any way. The truth of the matter is, she is a little trooper. She doesn't know a life any different than this, and takes it all in stride. All that aside, it doesn't make it any easier for Mom and Dad to see how this hinders her life.

Some of my best and most important life lessons have been learned from Banshee. I've realized that we need to focus on the happy and positive things in life; and to live each day to it's fullest. I've learned that we can take a crappy hand that life has dealt to us, and to turn it around to bring family and friends closer. Her zest for life and her spunky little personality help her get through, and help me manage my emotions and to keep them in check.

But that all said . . . the reality is . . . I'm terrified. For my own selfish reasons, I'm terrified of losing her, or having some attack leaving her in a state unable to live her life in a normal capacity; that all her life dreams and ambitions might be taken away from her. I'm terrified of what the future holds for her . . . but as her Mom, it's my job to encourage her to take risks, and to reach for her dreams, and because of that, I will.