Getting the word out

To see the people in your life pull together and try to help in any way they can, is something many people don't get the privilege in life to see. Most of us are never this sick, never in a situation when their life is on the line (thankfully) and need to rely this much on other people for help.

Last week when I was at my CF clinic, I got the news that I am now retaining CO2. Not a shocker, but by no means good news. The only symptom I have of this, is that for about a week I woke up with a headache that left me unable to raise my head. Beyond anything I could imagine. Being someone that does more research about CF than anything else, I woke up knowing exactly what this was. Another hurtle, another need for this transplant to come soon. Carbon Dioxide retention is the hallmark of type II or final respiratory failure.

With this news came even more urgency to get these lungs. The fact of the matter is my hands are tied, as are the hands of everyone else. These lungs will come when the time is right, and there is little we can do to aid the process. Well, the little that we can do, we are. My family, and now friends, are using various mediums to get the word out about organ donation around the country and the northern united states (where I can also get a B+ set of lungs from). I am being interviewed by various news papers, and hopefully there will be articles out soon about my fight. We will get people talking. After all, that's what organ donation is all about, getting people talking. Having loved ones hear your wishes. The great thing about this effort, it may help one of the 1700 Canadians that are waiting for organs right now. I am in a physio room with various people a few times a week. People that, like me, are struggling to breathe every day, and are just waiting for that one call. The call that will allow them to continue their life.

Aside from the papers, I have had people post my story and my blog on their facebook pages. I have one good friend I knew from University, who is a radio personality with over 1600 friends on facebook, that posted my link. I got emotional when I read his blurb about how he knew me. Took me back to Economics 100 at UofT where we met and became buddies for the rest of that freshmen year. He just wants to do something, anything, he said to help out. He knows that the organs are out there, it's just giving someone the courage now to talk about it. A topic, that, let's face it, is hard to discuss or think about. Anyhow, thanks Z for your shout out!! A good friend of my brothers, and a lady that I have known for years, P, is also working hard for me. Trying to get the word out around Toronto. P, is one of these ladies that knows everyone! I mean everyone! P, and so many others are really reaching out, it's an incredible thing!

From those of you who have seen the stunning pictures that we have of our little Scarlett, know that we must have a good friend that's a photographer. That friend, is actually a friend of my brothers from high school, that after reading my blog, decided to help us out with pictures of our little one. She will continue to take pictures of Scarlett, since we often don't have the energy or time to do so. Once I met Jenn, I knew she would be someone that could really help tell my story. As I stated in previous posts, Jenn is helping me document the transplant process. I think she is the perfect person for the job! Her pictures are incredible. Below is something that she's working on for herself. She posts these projects on facebook, and her latest picture (a self portrait series called 365, where she takes self portraits in various creative and meaningful ways) was this below. I loved it. It moved me to tears.

She wrote below the picture:

This image is for Natalia. May she come up for air REALLY soon.... xoxo For those of you that don't know Natalia, you can learn more about her and follow her on her journey http://natandmarty.blogspot.com/I did this all by myself in my bathtub with my tripod... if you watched me do it you would have peed yourself laughing :)

As I move along in this vacuum of the surreal, what is certain, and what is that which I forget, is that there are many people moving along side me. Cheering, holding on, taking deep breaths for me. I am so engulfed by the chaos that I can't stop and thank them all, I don't know how to do it until I can finally stop and rest. But I will. The time will come. But right now the vacuum is carrying me through, and I am concentrating on two things: breathing, and the miracle that is my daughter.