We've been very busy, actually. I've just finished my first semester back at uni (have never had a more time-consuming course), we had visitors from America, and amongst all of that we have been preparing Felix for school and cleaning and going out and staying in and seeing friends and creating craft activities and playing games and watching movies. I think it's also known as living.
The other week was particularly full-on. Two incidents stick out in my mind as being really difficult, and really had an effect on me emotionally.
The first incident occurred when we went shopping in Perth city. It's nine months after the smoking ban was supposed to come into effect, and absolutely nothing has changed. There are people blowing smoke all over the pedestrian malls of Perth. I had been looking forward to visiting the city as a more family-friendly destination, a place where I thought my family would be safe from passive smoking. This is just not the case.
I posted a status about it on Facebook. More of a rant, actually. I was pretty furious that because of other peoples' ignorance, stupidity and selfishness, we would have to compromise our health just to experience a day in the city. And I'm sure I don't have to explain the impact that cigarette smoke would have on Victor's lungs, right?
The second incident occurred a few days later. This time, I was angry again, but angry at myself. And sad. And I went through a huge range of emotions that had all seemed to be bottled up. All the thoughts that constantly lurk at the back of my mind came right to the forefront.
We had gone out to Hillary's Marina, a place of shopping and restaurants and cafes built right over the water. It's about twenty minutes from my house, and the kids love it there. It's a beautiful place where they can swim and play and then have ice cream. They splash about in the water and chase fish and look at the boats and laugh while they try to escape from me and run out into the water as far as they can. They fall asleep in the car on the way home covered in sand and salt.
We went there to have pizza for lunch and have a relaxing day as a family. We arrived early, ordered the pizza, and sat outdoors waiting. The first pizza arrived and I went to take out Victor's enzymes. They were not in my bag.
How could I have been so stupid? He needs them to eat. He certainly can't have a cheesy pizza without enzymes. Because of my stupid mistake, he had to miss out. Phil offered to drive him home and get him lunch at home, but I didn't want Phil to miss out on lunch too. I offered to go, as it was my mistake, but we decided to go hunting for something that Victor could eat, enzyme-free. That basically meant fruit. Victor got fruit for lunch, while the rest of us ate pizza. To his credit, he didn't seem upset by it. But I felt so horribly guilty. I didn't enjoy lunch at all.
This event created an avalanche of thoughts and emotions in my mind. First, shock. That heart-stopping moment when you reach for something that you're sure is there. It's not there. Oh, no. Oh no oh no oh no. Did it fall into a different section of my bag? Panic. No. It has to be here. I'm sure it's here. Tip out the contents of the bag, search.
It's not there. Guilt. What happens now? No matter what, it seemed like he was going to miss out on pizza. So much guilt. It's all my fault. People said, "oh no, it's not your fault." Because it's nice to say that. But unfortunately, it absolutely was my fault. That's not me trying to garner sympathy, that's just a fact. So much guilt piled on me. Victor is too young to understand that he even has CF, let alone understand the role and function of enzymes and the fat content of pizza and the subsequent stomach ache he would receive later if we didn't give him enzymes.
Then anger at myself for being so stupid and disorganized.
Then sadness that this is even something we have to worry about, that this is life now. That for the rest of his life, wherever he goes, he will have to bring his enzymes. That before every meal, snack, latte, whatever, he's going to need to take enzymes. The familiar feeling of it's not fair.
I get that missing one meal of pizza is not a big deal. Victor will never remember that day. There will be other days and other pizzas. There will be other times when we forget enzymes. But it just brought everything crashing down around me. It brought back the stark realization that this is our life now, and no matter how 'normal' it seems now, it's still not normal. And it will never be normal again.
In that moment, I wanted to cry. I wanted to scream and swear and jump up and down and have a big tantrum. In that moment, not having enzymes there with us represented everything I hate about CF. It was a crash back to reality that I was not prepared for.
I get that I seem to have a lot of these reality checks. My life is like riding a bike. Most of the time I'm cruising along pretty well. The weather is mostly sunny. There's some hills, but we're good. I can handle that. But then CF runs along next to me and pushes me off my bike, and before I know it, I'm on the floor.
Obviously I get back on again. Here I am, writing to you. I'm riding my bike again.
When I posted these events to facebook, I got a lot of support from my friends. I've met a lot of other parents of children with CF who could relate to my problems. I also have a lot of friends who are just supportive and awesome. They 'get' it.
I also have people who don't understand. And it's surprising when you find out which camp someone falls into. It's taken me by surprise many times, and still continues to. Some people were clearly uncomfortable by my facebook posts. Some people truly didn't understand why I was upset. And that's ok. I don't always understand other people's rants. But my feelings were real and valid. I'm so grateful to the people who understood that. I'm so grateful to the people who understand that my lives, our lives, and who I am has changed. I'm grateful to the people who will allow me to fall off my bike, and gently help me back on again.
So, thank you. I hope I can return the favour sometime if you get knocked off your bike. Thank you for being awesome. It's been a weird time for me, because I'm still learning and adjusting and acknowledging the differences in our lives and discovering new priorities and points of focus, but at the same time trying to feel 'normal' and fit in with life. Thank you for having patience with me.
|Victor with his apple (not pizza!)|