My most amazing baby shower!

(Our pretty flowers and champagne glasses)

Yesterday was my baby shower, and I have to say it was one of the best days that I have had in many many months. It was very tiring, and took a lot out of me - but it was SO worth it!!

My friend Katya offered her house for the occasion, and my sister in law did all the rest, and it turned out just as I pictured it. Most of my friends were there, and everyone got to meet Beth, which was very important to me. Until then she was just someone I spoke of, but no one got to meet (due to Beth and I living quite a distance away from each other). Since Beth is such an important person in my life, I wanted everyone that I knew to know her. I wanted to show that belly to those that loved me and say, 'that's my daughter in there, and this is the lady that's helping make it all happen!!'

The best part of the day (aside from the friends, the food, the perfect weather, the baby things...) was knowing and feeling the support of my family and friends. Support not only for the surrogacy, but also for everything that Martin and I were going through. I had not seen many people in that room for a long time. There were many phone and email conversations had, but not in person. So it was nice to get to do that.

I came away with knowing, once again, that I have an incredible group of friends. Friends that stand by me and love me, and support me when times really do get hard. Friends that I have known from middle school age, to high school, university, and later on in life. I think about it now, and I can't believe how lucky I am to have all of you!! Thank you!

Below are some pictures of the event. We have many, and you can find them on my Facebook page, but here are a selected few:

(All the amazing food prepared by Angie)

(Cupcakes by Coconut Girl designs, aka Kyla)

(the two hosts, Angie and Katya)

(that's me, enjoying some champagne, cupcake....and oxygen)

(Jess, Beth, and Sherri)

(High school reunion)

(At the end of the party, a few of us left....)

I could not have imagined a better day for my baby and me!! Seeing how big Beth's belly is made me super excited once again for the little time we have left until she is here. Now all we have to do, is put away all the beautiful things that we got for our baby (and we got so many fantastic gifts!!) and make sure that we're not missing a thing. Then we wait....

Today is a special, emotional, and good day

I did not want to post so soon, as I really want everyone to read my post about my friend Erika. Her story needs to be told. But I have some good news that I had to share with all of you out there....

TGH called, and I am being listed!!

When I saw the number on the phone, I knew it was them. I took a deep breath. It was the coordinator Michelle that was calling, I knew what she was calling about! She told me that they met yesterday, and talked it over with the whole tx team, and decided that I was a good candidate for tx (meaning they did not find anything to worry about in all those tests they did). If I was willing, they would proceed and get me on that list! Was I willing? Are you kidding? I am willing!!

So next week I meet the surgeon, sign some papers, get my pager, and let the journey begin. I am emotional today. For many reasons. A young woman passed away a day ago, leaving her young husband, her mom and dad and brother, and so many people that loved her. She left my heart empty but full. I remember her words to me, and I know that my wait for those new lungs will be triumphant. And I think my friend Erika will have something to do with that, as she watches over us.

Special, emotional, good day.

Erika Heller

Last summer my mom called me one morning and asked me if I had the Globe and Mail on hand. I thought that most likely Martin had it with him, and I would get my hands on it later. Why do you ask? My mom told me that there was such a beautiful love story in the paper, and Martin and I had to read it. It reminded her of us.

Funny enough, when Martin returned home from his morning coffee/paper ritual (before I was even up) he too had the article ripped out for me. He said I would like it, that the girl in it reminded him of me.

Below is what I read:

http://www.theglobeandmail.com/life/article691818.ece

There were so many similarities between Erika and I, from the fact that we both had our PORTs on our wedding day, to the fact that we both met men that loved us despite the challenges of our health. I did not know a lot about her cancer, or cancer in general, but I somehow felt that her story was similar to mine. A few people that had seen the article commented on the similarities, and after reading it several times I kept the article. I was very inspired by this girl. By the life that she chose to lead, even though she had to deal with so much, from such a young age.

There was a follow up article, again in the Globe and Mail about how Erika was doing. How her wedding and honeymoon went. After reading that article, Martin said to me one day, why don't you contact her. May be you guys would hit it off? I didn't really think anything of it. Why would be respond to me? I'm sure the article got Erika a lot of other press and I'm sure many young women wrote to her with their stories. But one afternoon, I looked her up on facebook, and I did find her. On a whim, I wrote her a letter. Sharing my story, our similarities, and my admiration for her.

Erika, responded to me right away. A long letter, much like I wrote to her. We hit it off. We shared so much in common. Her mom and dad literally live a few blocks from us, and almost on every level we felt we were alike. We shared in my excitement when we found out Martin and I were having a baby! She was ecstatic, and kept telling me that when she feels better we will go out and celebrate (and actually meet in person). We were sure that our husbands would hit it off too, they were also very alike! Over the next year I was sick, and she was sick. I would call her and her nurse would be with her....or mine with me. Though CF is nothing like cancer, and cancer nothing like CF, we were just young women fighting for our lives. We understood what that meant.

I also understood however, that Stage 4 cancer came with an understanding. Though Erika never gave up, she knew where things were going. And as I battled my battles, I always thought about my dear friend that did not have the hope of transplant that I did. It put me into place, how lucky I was to be able to have that hope. So tangible that hope. Erika was hopeful too, and that made me admire her on a level that I cannot explain.

Over the last little while, I knew Erika was very sick. We have not written in a while, I wrote her notes, I prayed for her. I thought of her on my darkest days, and she gave me energy. She told me that I have more fight in me than even I knew, and I know she was right. There was an elegance in how Erika conducted herself even when she knew there was no more treatments, no more anyone else could do.

Today, I read of her passing. She passed away today, peacefully with her husband and family by her side. She lived her dreams, and though we never got to go for that dinner together, I thought of her often, and she gave me the inspiration, on the darkest days, to keep my head up high.

May we all find such grace in our lives, and touch others in the way that Erika touched me and many others. We did not know each other for long, but you were like a sister Erika. Rest In Peace.

Final Article:

http://www.facebook.com/ext/share.php?sid=85405298949&h=BYgxe&u=tdpMn&ref=nf

A friend got the call!!

When I was at clinic last night I saw a friend of mine that I met during my last hospital stay. We only talked over the phone and messenger (due to infection control issues) but got to know a little bit about each other. When I met her she was already assessed for tx, but was not sure if this was the right time for her. During the last few months however, she become more ill and it became clear that tx was the only thing to do.

She was listed recently, may be 3 weeks ago, and last night at 9pm she got the call! I saw her yesterday as her mom pushed her wheel chair, when I was at clinic. That was at 7pm. Who knew a few hours later the call would come, and Ashley would have her new lungs. It's really amazing.

Her mom emailed me this morning and told me the good news! I am very excited and cannot wait to hear from Ashley herself when she has made some progress. Right now, everyone out there, think positive thoughts for Ashley. Think speedy recovery, speedy rehab, and strength for Ashley as she fights to get herself back physically!

I cannot believe it!

Clinic

Today was a long day of waiting. I had my CF clinic. Was put on more IV antibiotics at home. I am starting to think I won't be going off them during my wait for new lungs. Though I have to admit I like being on them since I feel half human on them, and am able to live more of my life.

So I have nothing new to report, so this will be a short post. I am waiting for the call from TGH to let me know if I will be listed, and if so, when I meet the surgeon and when I get my pager. Again, there is nothing I can see to think that I won't be listed, I just want to get that call, get the pager, and begin my wait. I know that due to my rare blood type that wait will be longer than the average, and so the faster it begins, the faster I will get my new lungs.

For those that don't know, Saturday is my baby shower. I cannot believe we are here already. I am really looking forward to it. Those that are coming are really some great friends of mine. Some people can't make it, it's not always possible to find a date that is good for everyone, but it will be an amazing day. I cannot wait for it, to celebrate with those I love, and to talk BABY!! I will be sure to take many pictures (or my good friend Kath who has been chosen to be the photographer) and post them post shower!!

The weekend and 62 days

We had a pretty glorious weekend weather wise in Toronto. Not overly hot, but sunny and dry. We spent most of the weekend outside in some form. On our back patio, on our front patio, or the Starbucks patio. I got some nice sun, and sun always makes me feel better!

Martin and I feel like we're more in love these days than we have been in a long time. We have been married for 2 years and 9 months, and have gone through all sorts of stages in our marriage already. There were always stressful times, like starting a business, flipping a home, going through infertility. There were great moments like our wedding day, our honeymoon, buying our dream home, finding out we were expecting a baby! Then there were all the moments in between as life just happens. I think marriage is hard, but I think it's incredibly rewarding. I think that if you don't find the right person, at the right time, a marriage has no chance of success. I feel like right now, after 2 years and 9 months, Martin and I have been through so much, that we can handle anything. Our commitment to each other has been tested and tried. This weekend we had a fight about something stupid, after which we decided to never fight again, we love each other too much. So we had a great weekend. I think both of us think periodically about what we're about to endure. What's about to happen in our lives. New baby, new lungs, just a continuation of the wonderful life that we already have, just with a major upgrade.

62 days. What's 62 days? Pretty incredible isn't it: That our little girl will come into this world in less than 62 days!! Where does time go? This Saturday is my baby shower, and I am so excited. It's going to be so nice to see all my friends and family!! I cannot believe how close we are!!

Reasons that made today a better day.

This morning I started the day feeling very run down and tired. I was coughing a lot and had a over all body-tired feeling. Enough of the 5am mornings I think! Anyhow, so we started slow, and had only 1 appointment today, so we wanted to be in and out, and done with.

When we showed up at reception for the V/Q Scan, I handed the receptionist my OHIP card and my blue hospital card. She checked me in, and then said, oh this is you! I have something for you. Then she looked around on the desk, and handed me a card that she had beside her. The envelope had my name on it.

I opened it and it was from a blog buddy, Peggy, someone that follows my blog, that I have never met. It was the nicest thing I have ever experienced. Knowing that she would go out of her way to do something like that. She said that she was across the street with her dad at another hospital and thought to drop this off. It was the nature of the effort that really got me, it was just a card, but it made me happy!! The world of the blog is amazing, it really is! How it connects us, and allows us to communicate to people we would otherwise not meet.

So my day was already looking up at that point! Thanks Peggy!!!

I went to the Nuclear Medicine lab, and when I walked in to register, I saw a man that I knew. He walked up to me, visibly excited to see me! But we both did not know how we knew each other! How do I know you, I said? He took my requisition from me (he's a technician there) and said, Natalia Ritchie, I bought the condo from you and Martin a few years back! I got excited: Paul!! It was great to see him. He was in fact a guy that bought our loft from us a few years back, may be 4 years ago. He was the nicest person ever! We remained friendly, even though the real estate market can often be quite vicious between buyer and seller. But we loved Paul, with his two adorable Dachshunds! Anyhow, it was great to see him. We chatted, and he ended up doing the test for me. He was great! He was excited that I was going to get my second chance through lung transplant, and was supportive, and positive, and told me that he sees people do so well, and knows that I too will do great!

Today, the positive thoughts, and words and comfort of friends made my day. Paul and Peggy, people that I have either never met, or met for a short time many years ago. It just proves, people are good and stand by each other when times are tough. Thank you friends.

What happiness feels like

I forgot what happiness feels like. Today I remembered. Not because of the assessment, or anything else in particular. I think happiness happens in moments. One day you just pause, and you think, hey, right now I'm happy. This happened today. This is how the day went:

Today was day 3 of the tx assessment. Day 2 was good, but very tiring, and I just didn't have the time or the energy to blog. Tons of tests, tons of pokes and strange machines. If I was not on IV's, I would not have been able to get through it. The antibiotics allow me to stop coughing long enough to do other things but....well, cough. My lung function only increases a few percent, but I am able to leave the house, and walk around, and just generally live some sort of a life. My mom and I were very very tired after day 2. Today, Day 3 was only interviews, and it was a good day. Martin came with my mom and I, as my second support person. I have my mom, and Martin as support people. Meaning people that will be with me during the time of being listed, and after tx when I am being closely watched for the first 3 months.

So today were the interviews. We saw the tx coordinator first, a nice lady that walked us through the process in detail. From being listed, to the waiting process, and then post tx time. There was a lot of information. The program is intense to say the least. Once I get listed, I am going to be at TGH 3 times per week for a work out program. No matter what, no matter how low my lung function gets, it's required. They customise a program for each person, so you only do what you can, but the point clearly is to keep you well enough to do as well as you can during and after the operation. Other than that, they told me that I am a rare blood type, B+, which can be a longer wait, or it can be a much shorter wait since I don't have a lot of people competing for the same pair as me. Depends how you want to look at it. Nothing I can change either way. Post tx is intense again, with the first 3 months being the most rigorous. Once a week PFT's, XRay's, and blood work to keep a close eye on what's happening with my new lungs. So basically lots and lots of work, but lots and lots of reward. That's how we think of it anyhow.

The program itself is incredibly impressive. We have dealt with less than impressive programs before, so going to a place where the people are this organised, this focused, and this knowledgeable is quite refreshing. After the Transplant Coordinator we met the dietitian as well as the social worker and we really were impressed by the people that we spoke to. There was definitely a sense of confidence that helped me as a future tx patient feel more confident about what I am about to embark on.

The coordinator told us that she will call us next week with the listing results. Meaning if I am a candidate for transplant, and did the team decide to list me. Though there seems to be no reason that I can see why I would not be listed, (or my CF doctor can see) this is a big step, and really the last hurtle before being listed and receiving my pager.

After our day at TGH, Martin returned to work and my mom and I got some sun in my garden. We talked about all that we learned today, there was SO much information, SO much to process and understand. When Martin came home a few hours later, we ate dinner and sat in the sun some more. Martin and I spoke about all sorts of things, and I thought about how much I have been through during the last few months. How much adjusting we all had to make. How many tears there have been, how much pain and frustration and illness. How many bad days, so few good health days. But today was the first day in a long time that I felt a little bit of the old me. I felt that by getting through the last few days I accomplished so much. They were hard, not horrific or terrible, but hard. Emotionally hard, physically hard, but I got through them and learned a lot about myself, and about Martin and my family. It's amazing how there are always things to learn, that always amazes me.

In the early evening Martin cut the grass, and did some work out front. I did a bit of sweeping (with my oxygen, as if it's not even there....how I am used to it now amazes me!!) and then my mom took over when I got tired. So I sat on the front porch and watched people walk by, watched my husband cut the grass, and watched my mom help out, and I thought, wow, today I am really really happy. Go figure. With all this, I am really really happy. Go figure.

Assessment Day 1

So today came and went, and I survived it. I am thrilled that it's over, and it was not a bad day at all. (besides being up at 5am) Considering how I worked it up in my head. I guess expecting the worst always works like that.

I am tired, and the Blood Gas hurt, I mean HURT!! But hey, it's not the first blood gas, and not the last I will have. The staff were very nice, and the hospital new, spacious and beautiful, which is such a step up from St.Mike's!

This weekend my close friend Melissa gave me the Toronto Life that featured the '50 Reasons to Love Toronto Now' article. It was so fitting since this was my big assessment week. I have attached the article below, "reason number 3: We Save Lives". Hopefully you guys can click on that article and read what it says. It talks about the amazing job Toronto General Hospital has done in contributing to lung transplant education and medicine. I mentioned the article in a previous post, but did not have it on me to attach. So I thought I would scan it today:

So this is my shout out you can call it, to Toronto General Hospital for welcoming me today as a patient. A place that hopefully, I will visit for years, and years, and years.

As we move forward through this time in our lives, as we go to the hopspital visits, as we face the fears and the possibilities of transplant, we are well aware that we are not alone. That not that far away, is a lady and her family that are doing such an incredible thing for us, words cannot describe. Making sure that our little baby girl is safe and growing. Without our surrogate Beth my fight would not mean what it does. Beth, we are 68 days away, and we have no words for what you means to us. Thanks You!

Victoria Day Long Weekend

Halfway through the long weekend, and I'm already tired. Yesterday was not the best day for me. My ear aches have come back and I'm still waiting for the antibiotics to kick in and make me feel better. After spending a lot of time in bed on Saturday, Martin wanted me to get out of the house. Since I was so out of breath, I could not see myself getting out of the car and walking anywhere, so he thought we would go for a drive. So that's what we did. Down to the water front. We found a place to park the car right near the water and sat there and talked. I have to say that I felt lousy! My ears hurt and I was constantly out of breath just sitting there. Very weak and very tired.

We ended up talking about transplant. About all our fears and worries. I guess we never really talked a lot about the things that we were thinking. We try to be positive and move forward and just let things go, as to not lose touch with what we are trying to achieve. But yesterday we did talk about it. I certainly explained my fear of not being well enough for transplant, since I am getting worse so much faster than I expected. Martin shared the same worry, but we understand that we have to focus on that time when the lungs will come and we can get our lives back. That's what we focus on, even when doubt finds it's way into our lives. Not something we want, but we are human and have those thoughts that are so natural in times like this. Dark thoughts, worry and anger. My goal is to get those lungs and raise my daughter. Help my husband raise our daughter. I know that I have only so much control in this situation, but that which I can control I will do my best to.

I feel like time is still right now. All focus has changed, and life has begun or ended, I cannot tell which one. It

depends on which day. On the good days I think life is just beginning. On the bad days I think life is ending. Not in a dire way, but I feel my body fighting, and I know it can only fight for so long. That is the closest to death that I ever want to feel. But I am proud to say that my spirit is stronger than CF, than my doubt, and much stronger than that feeling of death. As my lungs fail, my spirit rises.

Below are some pics that we took yesterday in the car by the water. I took them on my blackberry, so the quality is not great, but I thought they were fun.

(me and my parents dog Lucca on my front porch)

(Marty and I in the car....Marty being silly)

(that's better Marty.......)

(and that's me........)
Happy Victoria Day fellow Canadians!

Today

Last night I had yet another allergic reaction to a new antibiotic. So this morning I stopped that one, and contacted clinic to have them changed. So another clinic visit today, another change of meds. Feeling better. Or at least without an allergy, hopefully these drugs will give me a bit of a pick -me-up for tx assessment next week.

So another hurtle it seems. I feel like I'm running around more now than ever before. To this clinic, that clinic, these tests, calling oxygen orders, medication orders, all day long this is what I do. Whew.....I'm tired.

Thank you to my tx friends from all over the world that have sent me words of encouragement yesterday. It was a hard day, a hard story, a sad story. Thank you for telling me that your tx went well, that I have much to look forward to and that there is more good than bad on this road. Those are the words I need to keep myself focused on the positive.

I saw today that I have 25 people following my blog, which is fantastic, and nearly 6000 views. wow, that's something. I remember a few months ago when it was 20 views. The support that I have been experiencing has blown me away, and I cannot thank everyone enough for all of it. You lift me up.

One of those days.

Today has been a hard day. I went to clinic yesterday and had a lung function of 21%, so I'm back on IV's again. This time I will be doing home IV's, since I choose not to be in the hospital. So that's better, since home is home, IV or no IV.

As I went on facebook this morning I found out that a CF patient that I had bumped into here and there at clinic had passed away, after 10 months with his new lungs. It's such a sad story, and made me upset this morning. There are all these wonderful stories that I read about through my Blog about transplant, (Heidi!! Christi!! ) and as much as those lift me up, there is always the story of that one that didn't work. J was very young, much younger than me (I think about 8 years younger) and it breaks my heart that no matter how hard he worked and tried, he still lost his battle. It is the reality of CF, and the reality of tx, that sometimes things just don't go to plan. What a terrible realization.

I always see the world in the different way when someone I knew of from the clinic passes away. Though rarely is it someone that 's close to me, the thought that someone that had CF ended their battle in such a way is terribly sad and terribly depleting. The day seems darker, and the world seems sadder. Everyone has a mom, a dad, or a sibling, or a wife or a husband, perhaps even a child that will miss them. Everyone of these people had dreams, and wishes, and lives to lead. The thought that life is this fragile feels like vertigo to me. Completely impossible to understand and experience without shaking your head at life's tragedies.

Today, was just one of those days. I wish for tomorrow to carry more light than dark in my heart. I rebound quickly, I have to, since I am fragile, I have no time for down time. I pick myself up and say it's enough of those thoughts. The sun is out today, and my daughter is growing in Beth's belly.

Happy Mothers Day 2009

Today we are at t he 10 week mark, until we meet our little angel. Remember, we are being induced at 39 weeks. Wow, 10 short weeks. I remember when we were just 10 weeks pregnant like it was yesterday and cannot believe we are here at this point in time right now. And all that's happened since. It's been a tough ride at times, but the one constant joy has been knowing that in July we will have the greatest gift that can be given to us. That is what keeps me going, Martin going, my mom and dad, and everyone else in our life. It is the light in a sometimes dark place, and the hope in an often hopeless place. Children truly are a miracle.

Today is mother's day, and I cannot believe that I am already a mom. I feel like a mom. I think about my baby all the time. What life will be like for her with us, and how I can be the best mom in the whole world to her. I think about the day when I will tell her about how she made her way into this world, how sick her mommy got throughout the middle of the pregnancy, and the decisions we had to make to ensure mommy could get better. One day I will hand over this blog to her and she will read it, and know, that no matter what happens after the transplant, and no matter how long my life is afterwards, this fight right now was fought in her honour.

To all the mom's out there, Happy Mother's Day!!

Miracles everywhere we go!!

Miracles, that's how it all feels to me. Everything that is happening in my life right now, a miracle. Let me explain.

It's been about a month of me living with the notion that is it certainly, 100%, for sure time for transplant. It has not been an easy time. Physically I am very sick. Even with oxygen, I have to recover from a shower or bath, especially when I wash my hair. I have to recover from a walk up the stairs, longer if we go to the 3rd floor of the house. Walking is very hard, shopping lasts for about 30 minutes, so I do one errand a day generally. My appetite is a huge problem, as I keep losing weight. Vomiting after too much coughing, or just being really really nauseous is also a problem. I feel weak and tired, and much is attributed to my weight. My BMI (Body Mass Index) is for the first time in my life below normal, and hovers there or slightly better constantly. Up and down. Sometimes coughing alone makes me lose 5lbs. I have lost all my muscle in my legs, so they shake. Sometimes uncontrollably when I walk down the stairs, and it gets very scary and frustrating, since I used to be the girl with the muscles in her legs...I worked on those legs. Life is very different, and my body seems to be saying no more of this. My mind has been saying this for years.

Emotionally I am better now than a month ago. I think things take time to settle when it comes to such dramatic life changes and choices. The first few days even just post hospital stay, were really hard. I feel like I want to do things the way that I did them, but I can't, and for some reason my head can't get used to that. Then I just get angry at myself that I can't just get over it and let things go right now. Not for ever, just right now. Get used to the idea that I can't do this, and that and the other thing that I want to be doing. I have to rely on other people to do the chores and the life things that I miss so much. I am not talking about going out with friends, or to the cottage, or any other normal 29 year old activities, since those I have not been able to do comfortably for years and years, I am talking about clean the house, make dinner, and take care of things in my life. That's what I want back the most. To be productive and the person that I am meant to be.

Anyhow, that has been the past month. So many things wrong and twisted that there's not enough room on this page to describe them all. So many things not like they could ever be imagined in our young marriage. But, here come the miracles....

During all this turmoil and grief, little tiny signs started to pop out all around us. One after the other. Websites like this for instance:

http://www.recycleme.org/

I saw an interview about this website and the launch of this campaign in Ontario the day that I decided that transplant was for me. And once I make my mind up, for those of you how know me, know I will do whatever it takes to make it happen. That afternoon I was watching the news and saw the launch of this amazing campaign to help young people spread the world about organ donation in our province! Wow I thought, I got chills. What timing. When I went to the website, I was moved, not only for obvious reasons, but also since I think it's brilliant! Something government-related being this creative and amazing is unheard of. I love it! The timing moved me, I think it's a miracle!!

Soon after, whenever my mom and I were out collecting baby items all around Toronto, we would see these great ads on billboards, the side of urban buildings, bus stops, EVERYWHERE!! They look like old school comic books, and are interesting, funny, and well designed. One day we saw one where ever we went, and it sent chills down my spine. Signs! It's a sign! And a miracle....

Last night I saw a documentary on and by Michael J Fox. Adventures of an Incurable Optimist, and it made me cry. It was moving, it was smart, and it showed a now quite visibly ill M.J.Fox while struggling to regain control over his body, leading such an incredible life filled with love for his wife, his children, and his purpose. It made me think about my situation, and made it clear to me that the choices that we have made to live our lives as any other newly wed couple was the right choice. Not that I ever doubted myself, I have not, but it was a sense of peace that I got. Michael said at one point, that life is not about winning, it's about accepting yourself, that's where hope comes from. And I thought about that. That's where hope comes from, that acceptance. I agree in so many ways. Martin and I accept what we cannot control, and that's where our hope comes from, since it gives us freedom in every other thing in our lives. Michael also said something else that I really loved. He made a wonderful connection between creativity and hope. And when I think about it, I think he's right. When I paint or draw, it's the only time that I forget and am liberated from my worry and my disability. It is the ultimate hope for me. That time. It gives me the feeling that if I can lose myself in such a way in a drawing, in that creative moment, it means there is hope for greater relief and greater beauty, and just GREATER! M.J.Fox says that music is the soundtrack to optimism and hope. I think that's a powerful statement. I feel that hope walking through a gallery of the masters in Paris, or through the new AGO by Frank Gehry.

The rest of my little miracles that have been amazing me during this time, have been my friends. So many people reaching out to me. Friends that I have had for years and years that have never left my side, those that are quite new, those that I meet along the way that help energize me on a bad day. I feel, truly, even though the world may think I'm crazy, that some energy, call it god, is placing objects, people, and situations in my life right now to pick me up and allow me to get through this time. A time, let's be honest, that in it's darkest moment is darker than black. To allow me to have the things that I have fought so hard for in my life, the Independence that I have gained over 29 years, and hold them together for me until I am ready again to take them over sometime soon. This is a miracle. I have no doubt about it. A miracle so clear to my soul, that I cannot keep it to myself.

To those out there struggling right now with life, with death, with hardship and grief, you can find success in every situation. Success, in my eyes, is found in choice. And you always have a choice to be positive, to be hopeful and to be optimistic. Success is choice. Choice is hope. I choose to live in Hope.

The ultimate workout!

What was this ultimate workout you may ask.....well for anyone that has ever put together a pram, you will know what I am talking about!

The funny part is that the store put it together for us, we just had to learn how to convert the bassinett to the seat....and that took us about 3 hours!! I have to say however that the pram is my favourite thing that we have baby-wise thus far. It is just the coolest piece of technology I have seen in a while. It's light, and comfortable, and soft, and easy to fold into the car, and then open up again (now that we finally figured out how it all works)!!

And since we're taking pictures of baby stuff, here's the car seat that we are yet to install!!

Ahh Baby things, the simple joy of baby things.....sitting in the kitchen waiting for a little body to occupy them. Pictures of the nursery to come next....I'm working on it!!!!!!!!!!! Sorry it's taking a while, I'm on oxygen!!

Transplant Assessment

Since I got my tx assessment package in the mail, I thought I would share it with everyone. So that when the 19th comes, everyone out there is sending me positive vibes and prayers so that I can get through it without losing too much health, or losing my mind!!

Day 1: May 19th
8am: Blood tests, Chest Xray, ECG, Urine (total about 1.5 hours)
10am: 6 minutes walk test
- This is a self-paced test where you walk as far as you can walk in 6 minutes on a flat surface. You are tested using your own specified level of oxygen. Other exercise testing will also take place to measure endurance. Total time about 60 minutes.
12:30pm: CT Sinus
- People with CF have this test done to look for infection in the sinuses. This CT scan is going to be of my face. It will take about 15 minutes.
3pm: PFT/ABG's
- PFT's (which I always do in clinic) let them know how my lungs work; results are compared to someone my age and height with a normal lung function. An Arterial Blood Gas will be taken from my wrist (this hurts!!!!) to test the level of oxygen in my blood. These will take 45-60 minutes.

Day 2: May 20th
8am: Echocardiogram
- This is an ultrasound of the heart. To tell how well my heart pumps blood, as well as the valves in the heart that separate the chambers to see how they open and close. This will take about 45 minutes.
9:30am: RNA (MUGA) scan
-This scan tests how well the heart pumps the blood and the percentage of blood being pumped out of the body. It can measure how well the chambers move at rest and exercise. It will take about 1 hour at rest, and 1.5 hours for exercise. Two injections are requires.
1pm: Anesthesiologist
Anytime: PRA Level
- It takes about 15 minute to do this blood work. This blood work will screen for antibodies (immunity) to other people, and will be stored in the freezer for future tests. If I have immunity, further testing may be required to determine the strength of this immunity so that they can be prepared to care of me post transplant.

Day 3: May 21st
9am: Transplant Coordinator
- meeting to talk about the transplant process. Lots of questions about support people, life style etc. It will take about 1 hour.
10am: Dietitian
- 1 hour appointment to talk about nutrition, pre and post transplant.
12:30pm: Social Worker
- Talk about family support, living situation, financial issues if there are any, how to deal with insurance etc. 1.5 hours for this meeting.

Day 4: May 22nd
11:45am: V/Q Scan (Quantitive pulfusion scan only)
- This test will take 60 minutes. I will be injected with a nuclear dye into my vein. This will flow to my lungs and show up on the scanner.

I will be one happy woman on the 22nd, let me tell you. Once it's all done. Just writing all this down makes me ill. I've already done some tests at SMH and cannot believe how much more there is...!!!

A month from my past test is when the decision to put me on the list will be made. Right around June 21st, and my 30th birthday.

Patience

The nursery is really coming along now. It looks so good I can't believe it's not even done yet. Today I picked up a few odds and ends that really made the space pop. It finally looks like a little girl is going to live there, finally!


Tonight I will start the mural on the window wall. I hope that it will not be a big job, since it's just a few wallpaper-like elements that I will paint on. Wait and see I think it will be amazing! I think once that's done I will take some pictures, since I really want to show it to everyone. The chandelier is not here yet, even though it was ordered many moons ago....many many! And that's the final big item to come. But may be I will take come pics in pieces to give everyone an idea. We've been working so hard on that room, that it needs to be seen by someone other than us!! I was hoping to have it done much sooner, but with everything taking months and months to order, and my being sick, things have been really slow. This little girl better not think of coming to us earlier than expected.


Today I took a walk down Queen Street West and stopped at a really beautiful store named Chatelet Home. Imagine an antique store for your little princess. The most beautiful things you can imagine for a nursery, for a little girl of course....

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Okay, so the above was written a few days ago. I never finished it, as the last couple of days have been terrible. Generally I have not been feeling well, and last night I was terribly dizzy and nauseous. Strange symptoms that freak me out, and make me worry. This morning things seemed to have calmed down, so hopefully the day or two in bed has helped me out. Today, I hope I can get more done and more life lived.

I got my assessment package in the mail, and the dates for all my tests and appointments. Looks like by May 22 it will all be done with. From May 19th - 22nd the days will be long and the tests quite draining. I am not looking forward to that week, but just want to get through them, and get myself on that waiting list. That's my goal. Only then will I relax and focus on my babies birth. It looks like I will have a month or so before our little girl is born to get used to being on the waiting list for tx, and just focus on her arrival.

I think about what's ahead all the time. ALL the time. So many things are happening, I cannot imagine all this madness will be over within a years time. There is a level of calm that you have to gain during this time, otherwise you'll lose your mind with worry and thought and calculation. I just go day by day, night by night, and try to stay calm and focused. For those who know me, know that I am quite the Type A personality. I am demanding on myself, those around me, the world in general. I love to control things. I love to learn and grow and move ahead, never dwell or go backwards. To be in this situation right now, in many ways, is the Type A personalities worst nightmare. Total loss of control. Loss of the ability to demand yourself to do anything, your body won't allow it! AHHHH!!!! That's how I feel on most days. This, more than anything, is a lesson in patience.

Patience, patience, patience.....