Saying thank you and goodbye

After lots of thought and conversation about the topic, I have decided that it's time for me to shut down my blog. I will print everything that I have written, and I will bind it, so that I have it for the future, but I will shut it down.

When I started this blog, it was a huge source of comfort and relief for me. I never expected it to become as large as it did. For so many people to connect to it. That was a lovely surprise. I started to write when Martin and I found out that we were expecting. We had just gone through Invetro, and with the help of our amazing friend Beth, we were awaiting our 9 month journey to meet our daughter Scarlett. During that time I never imagined the year that 2009 would be. If someone told me what the year had in store for us, I would not have believed them. It all unfolded so quickly. So suddenly. Looking back, it has all been like a bad dream. A dream that we are all just waking up from now.

During the time that I was waiting for my lungs to come, my blog was my support, my comfort, and my connection to something I was physically unable to connect to any more. I was so isolated socially, so emotionally robbed, and physically broken, that the blog, and the Internet allowed me to make connections with people that I missed so much. That I needed so desperately. During the most desperate times, my blog allowed me to express what it was like to be so sick, so sad, and so scared. I never expected the support and love that I got from perfect strangers, old friends, new friends, family, and other bloggers. I was hooked the moment I wrote my first post and got my first comment about what I had written. The connection was real, and it moved me.

As much as there has been support there have also been critics. People that have wondered why my family and I would be so public with something as personal as my illness and lung transplant. I want to use this forum now to answer those people. There are many reasons why we went public, and why we continued to be public. The first and most immediate reason was my need for lungs. I was very sick. I was on my death bed. I needed an organ that was not coming. I was a rare blood type, and we came to the conclusion that since there was nothing we could do for me at that time, the only thing we could do was to get awareness out about organ donation, tell my story and may be, just may be, reach that one person that would make the choice for a loved one that had passed away. It was a difficult thing to do, knowing the nature of organ donation and the controversy that is always around it, but it was all we could do. To this day, I would do it all the same way. I believe it worked. It helped me get my lungs, and many other people too. I believe that with my whole heart, and it makes what I have gone through, and what my family had to endure, not in vain. But with purpose.

I also went public with my story, since it brought me comfort. I know for many people it would not, but for me it did. In October when I was at St.Mike's and in so much pain, waiting for my call to come, and the Star ran that beautiful article about Scarlett, Martin, and I, I gained strength from the fact that everyone knew, and that most people wished us well. I say most, since I know it was not all. Some people were outraged that I would have a child knowing how sick I might become. I have never addressed those people. I was always very kind. Today I will say what I have wanted to say for over a year. How dare you judge me? My decisions. My life. I only have the strength to say this now, because I see the child that my daughter is. The perfect person that she is, and the love that she is raised with. She is proof of what family love is. The assumption that a mom and a dad make a perfect family is pure ignorance. We all know many moms and dads that should not be parents. But they had the freedom not to be judged. My illness has always opened the doors for judgement. In fact many people with CF are judged every day for the choices that we make. We are people, we have the freedom to do like all other people, and our children will grow up with a perspective that will make them incredible people. I watch Scarlett grow up. Happy, healthy, and strong. Smart, loving, and caring. She has been raised by my husband while he went through insurmountable stress. She was raised by my mom, who was there when my husband was by my side when I was dying a terrible death. The result is a child that loves unconditionally. Loves her mom, her dad, her babcia, her dziadek, her uncle John, her aunt Angie, her cousin Sophie, her nana, her papa, and on and on. Her connection to her mom, to me, is unwavering. She knows I am her mom, even though I did not carry her, and I was away unable to see her for months. This is love. To those people that doubted that love. That criticized my family and our intentions (and our very difficult and calculated decisions), you people must lack that love, as you would never doubt it if you knew it.

I don't want this last entry to be about negative people. Since out of thousands there were only a few. But I had to write what I felt, I think everyone out there has come to expect that from me. Recently I have had the opportunity to go through some of the comments, and emails, and letters, and I felt like I needed to say what I felt. So there it is.

To everyone else out there, I have felt so much love and support, it's hard to imagine. Toronto was more than supportive. I felt the love through the walls of the hospital, through the darkest days, through the pain, through the set backs, and through all the victories. While I was at TGH I got to know a lovely woman that was a perfect stranger to me (T you know who you are), a woman that waited in the ICU waiting room for days and days while I waited for my lungs, and as I recovered from the operation. She came with cards, with gifts, with love and support. I also knew of a young man that had come to offer a part of his lobe, to act as a living lung donor, to save my life. He wanted to share the life that he was given with me, someone he only knew through the media. To him, even though I do not know who he is, I want to say thank you. The gesture to want to do such a thing is larger than the words I can use to thank you, and certainly larger than my ability to comprehend. But what a testament to how much we as people care for one another. I will never think anything, but that people are, by nature, good people.

Today, March 21, 2010, is the 4th month anniversary of my lug transplant. 4 months ago, a woman named Sandra Foglia was removed from life support by her daughters and was granted her wish to be an organ donor. I don't know a lot about this woman. But I do know that she was also a mother, like me. She gave to her girls, and she gave to me. I'd like to think she knows what she did for me and my family. That somewhere out there her spirit is free and she smiles upon the gift that she gave. Not many people, like Sandra, are organ donors in Canada. This makes Sandra a very special woman in my eyes. A woman that was able to think of a time that she would no longer be of this world, and would so generously pass on what she could in her death. I am trying to be articulate here, but I am failing short, as her gesture is too grand, too real, too close to my heart.

Four months ago I was somewhere else. I don't remember where I was, but I know I was close to my god. I felt his presence. I knew that no matter what, I would be okay. I have not written a lot about the things I remember and the things I don't. The impressions that are ingrained in my mind, the thoughts that run through my head to this day. I have not written much on the subject, since there is too much to write, and truthfully, I tend to weep when I think about it all. So, slowly I am trying to get it all down, so that it is not lost, but it will be quite some time before I am ready to share any of it. That's where my hope of writing a book about it all comes in. The question is, will I ever be brave enough to share the mystery of it all.

Today, my friend and Toronto Star reporter Barbara Turnbull wrote yet another amazing article about my journey, and now the journey of the donor family. I have added the link below as it's a wonderful showcase of what the donor-recipient relationship can be.

http:// http://%20http//www.healthzone.ca/health/newsfeatures/article/782895--finding-hope-in-a-mother-s-death?bn=1

So I thought it fitting that this be my last post, as I feel a sense of closure to it all. We have come full circle that's for sure.

With love and eternal gratitude.

Natalia.

more of the good stuff...

Much has happened during the last few days, and all have been good. Really good. I have been tired as a result, but the kind of tired I can handle. The kind of tired that a nap with the Bi-pap can help and some rest. My lungs have been doing much better, as the combination of IV antibiotics as well as steroids have really been doing their job. Phew. I know, I know, I have to stop doing that. I am always amazed at the ability for my body to bounce back and somehow do 'better'. I certainly feel stronger and am glad for various reasons, one being I know that undergoing such major surgery when I am stronger is better. Simple as that. I also am just so thankful for the break. I just really needed this break. For the battles ahead.

So, the good stuff. The CBC interview went well. I was a little nervous, and stumbled over my words more than I would if the camera was not there, but hey, I'm certainly not made to be on TV! But the staff were awesome, and made me feel really great about the whole process. Nick and Ed, you guys were really amazing! I look forward to the story unfolding and for you to help us document such an incredible time in my life. Generally throughout the interview I kept my cool. I only cried once when talking about being away from Scarlett. That's the only sore spot I have. Everything else such as life expectancy, transplant, the surgery, suffering, illness....that's stuff I can handle. I've lived it so long, I can talk about it. But missing Scarlett, having to leave her behind at home, well anyone can understand that being an emotional thing to talk about. But I was not too bad. It wasn't ugly crying though, nothing like that.

So CBC guys, I can't wait to work with you again as my story unfolds. I feel super lucky to have this opportunity!

I also had the huge, HUGE, super HUGE privilege to meet and get interviewed by Barbara Turnbull of the Toronto Star. She's writing an article about me, that I will be sure to let everyone know about once it's out. We think it's running this weekend, on Saturday. But I will post a link for those who don't get the Star, or read the Star, or of course for those who don't live in the area. Barb is a special lady. She's a gifted reporter, but for those that live in the city, we know the amazing story that is her life. To make a long story short, in 1983 Barb, as an 18 year old teen working her part time job at the local convenience store, was shot in the back during a robbery. Within minutes her life had changed, and she had become a quadriplegic, paralyzed from the neck down. The story changed how the city viewed violence, and the innocence of the city. I was very young when it happened, but when you ask people over the age of 35, they remember the shooting well. It was a huge deal in Toronto. Barb was amazing to talk to. We connected right off the bat. Her working dog Bella was a special treat, sitting with me on the hospital bed as Barb conducted the interview. Her outlook on life, what she's been able to achieve, and the way that she dealt with and continues to deal with her disability is amazing to me. A really strong woman that will tell my story well, I have faith in that. Barb gave me her book to read, that told her story, and I have been so captivated by it. What an amazing life, what an amazing way to look at life. I cannot wait to read the article that she writes. I would encourage anyone to pick up her book "Looking in the Mirror", it is incredibly powerful and encouraging.

So I feel like I have been given all these gifts. All these encouraging signs. With my feeling stronger I can handle the wait better. It's not so scary, not so now or never. The doctors and the team are confident it will be any day now. I realize that this confidence comes strictly from good will, no concrete ability to know when it will actually come, but it gives me hope, makes me confident that it really will be any day now. And if it is a bit of a wait still, well, as long as I can maintain feeling this stable, I can take it.

Lastly, what I wanted to post before I rest, today I had a great visit with Scarlett. She was amazing. She came in and my doctor got to meet her, which was great, as well as some of the nurses. They all loved her, but common, she's easily lovable!! So plump and delicious!! She came in wearing some of her winter clothes. Amazingly cute. My mom got this video of her and I 'talking' and I think it's the best video from the facebook series yet. I hope I can figure out how to post it, because I know it will make everyone out there smile!

Lastly, I want to continue to thank everyone for your emails of support. Martin gets many too, and he sends them to me, and each and every one makes me cry. Many of you say that you feel silly reaching out to Martin or me, since you are either strangers or have not been in touch for many many years (sometimes decades) but I want to make sure that no one feels silly. I certainly only feel comforted and loved by the support. I find that when times are hard, knowing that there are people out there thinking of you and your family is sometimes the push that you need to get through it all. So, once again, thank you everyone. My old friends, new friends, Martin's old friends, friends of friends, family friends, strangers, we love you guys. Keep them coming. They are helping I assure you!!