Monday, May 13, 2013
Am I living in some kind of la-la land? I realise the seriousness of cystic fibrosis. Truly, I do. I tend to not dwell on it and only focus on what is happening to my family right now. This has been a good and bad approach; good in that I don't get bogged down in the what-ifs and maybes, bad in that I have a tendency to gloss over things "oh, but that won't happen to us." Yes, I still have that mindset. Incredible, really, when I know firsthand that yes, these things do happen to you!
Today I had a nice little jolt back to reality in the form of a phone call. I think all my visits to cold harsh reality come in the form of a phone call, no wonder I keep accidentally breaking each and every phone I've ever had. I'm inadvertently saving myself from things I don't want to hear.
Today the phone call was from the insurance company we applied to for travel insurance. We are going to America for three weeks soon, so we applied to the one company we found that didn't outright deny coverage for CF patients. This particular company said they would consider covering CF on a case-by-case basis. Victor's doctor signed the forms and said he was more than happy for Victor to travel. Victor has been very healthy so far. The medications and treatment he's on are simply preventative at this stage. So it came as a shock to me when the voice on the phone told me our application to have Victor's CF covered for travel was denied. I actually had to get her to repeat what she said.
It felt like massive waves of disappointment roll over me. Everything had been going right. Everything was fine. The kids are healthy: we just wouldn't be going on this trip if they weren't. We got the hoped-for bassinet seat on the long haul flight. We discuss the flight and where we'll be staying with Felix all the time and watch Peppa Pig 'The Holiday' every day during morning physio. I was so confident that this would not be a problem at all. But there we were: denied. I asked why, why was he denied insurance? I was put through to someone else who explained the company takes a 'very conservative view' when it comes to covering CF and he was denied because he is on antibiotics.
Antibiotics...but they are preventative antibiotics. He is not actually sick. He is on antibiotics to prevent sickness. This is standard treatment for babies with CF here! I was told that I could appeal the decision if I could provide medical evidence, but it was highly unlikely they would change their minds. Especially due to our destination and the length of stay.
I don't know why, but it really upset me. I felt irrational and pathetic being so upset about it. I hung up the phone and cried into my pyjama top, feeling like an absolute loser. I took the washing off the line and cried some more. Wandered around in a little circle becoming more agitated and sad. I don't know why it took me so long to realise that not everyone has our best interests at heart. I don't know why it was such a revelation to me to realise that the insurance company's bottom line was money, and that they had absolutely no obligation to cover anything they were even a little bit hesitant about? It hurt to have my child denied something that the majority of people take for granted. I have never been denied insurance before. I've never really even thought about it. To me, getting travel insurance has never been a big deal...I went with the cheapest option, my only concern lost baggage. Seriously. I have lived my life like a little cork bobbing around in the water, keeping afloat somehow, almost oblivious to waves or stillness, because things will turn out ok and nothing is serious because I pop up to the surface again, unharmed and ready for the next current to take me along somewhere. But now I feel the pull of something anchoring me in place and I realise that this is so much bigger than me. I realise that our lives are forever changed in ways I didn't anticipate and there will be more in the future that I still don't know. I now truly understand that Phil and I have to be Victor's advocates, and what this actually means. I suddenly know that I am not the same person any more and never will be again. I know I will lose friends. I know I will gain some too. I know that no one else will ever truly understand what we go through...but that works two ways, because I can never truly understand what life is like for someone else.
I calmed down and called PMH to get our letter sent out so we can get through customs with Victor's medication, and our lovely CF nurse suggested getting in contact with CFWA about travel insurance. I left a message for them but I'm not hopeful. Honestly at this point, I just think we might as well go without it. We'll get normal travel insurance for all four of us, and hope that Victor doesn't have any need to see a doctor for anything CF-related while we're over there. If he does, then he will still be able to get help, but we will have to pay for it out of pocket or discuss options with the hospital. Of course, I am fully expecting that he will be fine and nothing of the sort will happen: if I thought there was a chance of that happening, then we just wouldn't be travelling at this time. And we have checked with his doctor, who is happy for him to travel.
Although I was calm, I still felt unhappy and just exhausted after the morning we had. It just really threw me and so for the rest of the day we just pottered around the house. I took the boys outside to play for a while when suddenly I could smell cigarette smoke coming over the back fence! I couldn't believe this was happening. I am fairly certain it's our new neighbours because we have never had this problem before. I felt absolutely livid. And today of all days! I took the boys back inside and shut the windows and doors. Luckily they had already played outside for a while by this point so they didn't mind coming in, but still, I shouldn't be forced to bring my kids inside because someone is smoking nearby. But that's a different issue for me to rant about another time.
I wrote this on the day it actually happened, which was a few days ago now because I have been busy and quite frankly didn't want to keep thinking about this issue right now. We received a letter from the insurance company shortly afterwards, confirming what they said on the phone. It's there now in black and white in case there's any confusion. Phil and I glanced over it, muttered a bit, and threw it in the black hole of paperwork we have in our house. I'll probably see it again in a years' time and do the same thing with it. Whatever. I consider the denial of insurance to be just another example of ignorance (oh, there are so many examples) and I am not letting it get in the way of our holiday. We have a plan in place in case of emergency (Plan A, B, C, D and so on!) and we are setting the rules for our own life, considering we know our situation better than a company ever could. And I say that these boys are going to see their Grandma and that is final!