My first 30 with CF

Scarlett,

A few days ago an old friend from high school came to visit me. We were very close before K moved to Vancouver and her short visit reminded me how much fun we used to have. She got a very special book for you...soon I will start to read it to you. It's a book that my mom used to read to me in Polish when I was little. Anyhow, K and I spoke about the transplant a bit, and she said something interesting to me, which has inspired this post. K said to me, 'Scarlett will never know this life before her.' This amazed me, even though it's an obvious observation, it's also an insightful one. Just the thought that all that has happened for these 30 years you will never know, since you were not here yet with us. For some reason this amazes me. 30 years with CF, 30 years you will never know.

In so many ways I am glad you will never know it. That transplant comes at a time when you are so little. You will know as much as you ask, and as much as we talk about. 30 years is a lot of story to tell. And of course it's not all CF. In fact very little is CF. My life has been full of so much more, but also as a result of CF, in some ways much less.

Before you, I had to do a lot daily to keep myself healthy and living my life. My daily routine included 2 nebulized masks a day which later became 4 a day, and later 3. Depending on what medication I was taking. Things did change over 30 years. I was always on a lot of pills. Enzymes whenever I ate (5-8 with each meal) and others such a vitamins, heartburn medication, antibiotics.... Pills were never a big deal for me. Next came the puffers, as well as emergency puffers for exercise and when I was in school. The most time consuming of all my therapies was always my physio. When I was a child, your grandmother and grandfather (my mom and dad) did most of it for me. It involved clapping on my back and chest to loosen up the phlegm inside my lungs. We did about an hour a day for years and years and years. When I was in my late teens I began to use other devices and ways to do physio, so it allowed me some independence in life. Lastly, every 3 months I went to clinic to see the CF team. The doctor as well as her or his team made sure that I was on track and controlling CF the best we all could.

During the last few years I have been going to the clinic a lot more. Sometimes every week, sometimes once a month. This was due to constantly battling infection, resulting in IV or oral antibiotics either at home or in the hospital.

It is impossible to tell who I would have been without all this in my life. As I said before, there has been so much more than just my CF (I will tell you about all that too). But I think so much of who I am has been shaped by having to cope with being sick and constantly dealing with the medical industry. Having to constantly deal with doctors, nurses, technicians.....the list goes on and on. It made me strong, and it made me effective in getting what I want.

There are so many lessons in going through the ups and downs of chronic illness, and no matter how I try to shelter you from it's hardships, I know I can't. It's impossible. You have already been thrown into it all, at the rockiest time, and I am amazed at how well it's all going. How much love there is around you, how happy you are, how peaceful you are. You sleep with so little fret, your content little smile floods the mornings, and closes each day in the bath. Every storm, is quited by your soft giggle (you are starting to giggle and laugh and watch our every word) and calmed by your simple needs. It's like the hardest of things living in the house with the simplest of things, I think this has saved my life. I have no doubt.

As you grow, there will be many days, I promise you, that we will escape my medical struggles. I promise you that, if nothing else. We will have normal lives. We will focus on growing as a family, and even allow ourselves to get tired by life's trivial motions. As I promise this, I also promise that I will never ever forget what it feels like to struggle in the most fundamental way, as I am now. Since it is this that has brought the most awesome perspective into my life, and it is this that will carry me into the future appreciating every day that I have that is normal, and perfectly trivial. This is the largest and the most significant of things that I can bring into our life together, and the most significant of things that I can teach you. At least I will try.