more tears than words

Things have been coming at me from every which way, ideas for things I wanted to say in my blog. But I seem to be stuck in this place, and as a result at a loss for words. This post is for Scarlett, for my family, for the families of others battling CF, for other patients, for those waiting for lungs, and those battling for their lives for any other reason. It is my way to get it all out, at a time when I have more tears than words.

With Autumn has come doubt, fear, and the heaviness of my pain. It has snuck in when I was not looking, since it seems like I went from holding it all together, to letting it all fall apart.

As the days get shorter, and the sun feels cooler, I have been feeling my body work harder and harder for air. During the course of last week, I have been so full of sadness and grief that I have been overwhelmed by it. It seems to be a result of so much suffering. When the suffering is alleviated (by drugs, sleep, or just a better day) what results is literally an outpouring of emotion. Mainly sadness, anger, and grief. A terrible combination.


Martin and I have had several conversations recently about all that's happening, this wait that we're enduring. He is my husband, and we need to stay united and understand each other to remain close. So Martin tries to understand. We talk, and we try to rationalize what is happening, and console each other. On September 28th, Martin ripped out a great article for me from the Globe. It was called "Why I'm thankful for multiple sclerosis" by Lorrie Jorgensen. I got a lot out of the article, and would like to share some of it right now. Lorrie, the author, describes the pain that she feels due to her MS. I always think that part of my anger often comes from not being able to explain to people, when they ask how does it feel, how things feel. How CF at this stage feels? Hoes does the pain of not being able to breathe feels? This is what she writes about the fatigue of MS:

"The tiredness is hard to describe. It's not like the fatigue you feel

when you have completed your first 10-kilometre race or triathlon.

I wouldn't know what that feels like, but I've seen the joy and elation

that accompanies the exhaustion runners bring to the finish line and

this isn't the same kind of tired. Runners are rewarded with

endorphin buzzes and recovery time. In the grip of MS fatigue I am

not. It's also not the kind of tired you get when you've stayed up

all night to study for an exam and then aced it. You are still grinning

with the accomplishment on the way to giving yourself permission

to sleep all day – a worn-out, blissful utopia. I know what that feels

like and it's not the same kind of exhaustion. There is no joy or

elation, no rewards or accomplishments. MS fatigue is lonely,

depressing and full of guilt. It is being exhausted just thinking about

doing dishes, vacuuming or knowing there is another day of

work ahead. I have become proficient in the art of negotiating with

myself. When I miss work or a social activity, I obsess over the need to

explain myself to people. Other times I play the silent martyr,

hoping for compassion and understanding that I am unable to ask

for because outwardly I look normal and I'm afraid people will

think there's nothing wrong. " -Globe and Mail, Toronto

http://www.theglobeandmail.com/life/facts-and-arguments/why-im-thankful-for-multiple-sclerosis/article1302212/

I found her words honest and true. They are so true. Though she might have MS, and I might have CF, there is so much that I relate to in what she says. CF breathlessness is heavy, sharp, and relentless. It leaves me lonely, depressed, and frustrated. I can't explain it to people. I also can't explain why I look perfectly fine 90% of the time, yet I am living inside a body that no longer works for me. When I start looking 'unwell', I am usually on the other side of the pain where there is little fight left in me. It is the days that I look 'okay' that I am doing the most fighting. That 'okay' facade is the hardest it seems. Takes a lot of work, both physically and mentally. Yet for many years, when my lung function was 80%, 60% 40%, even 35% I was able to do that fighting and not show the world when and if I had to fight. Part of that of course was that the fight was not as hard as it is now. Today I am literally fighting for my life. Each day I think it can't and won't get harder, but it does get harder. Each of those days I fight out of the darkness. Yet as autumn has come, so has the change that has emerged from this stress. The weakness of my body, the bruising of my soul. I have had to give things up, once again, perhaps not the last thing I will have to give up. I have had to allow more to be done around me. I have had to watch the worry of those who love me. I have had to remind myself that as quickly as my body is shutting down, it will also reignite post transplant. I have had to leave my life to the mercy of random occurrence.

I often feel that by writing about how difficult this process really is, I am letting it win. It being the terror of illness and loss of health. That by letting people know how hard this fight is, it makes me less in control of my life. I know the burden of that. I am a mother, I am a wife. I am supposed to be in control of my life in every way. I feel the guilt and the burden of that every day. But the reality is, speaking out about the stress of this process is my way to reach out to people in this world that have to go through something like this. Something so unthinkable, it's still hard for me to believe I am here, in this place. There is a large misconception, that because we are patients (CF patients, Cancer patients, MS patients....) we are magically given a coping mechanism that others don't have - the Patient mechanism. That we are built differently. That idea makes me resentful, since it outlines an inequality in people. Them and Us. The well and the sick. But it's not like that. After 30 years of life, I still have moments when I think, I can't believe this happened to me? And it's not because I think I'm better than other people, and that it should not have happened to me, nothing like that. I just can't believe that I'm in this situation. Inches away from life. Inches away from death. I'm just a person like any other. A daughter, a sister, a wife, a mother. I just want to continue doing what I was doing; Living my life.

I often reach out to people in my head, at night. I close my eyes and try to fall asleep. I concentrate on my breathing, on the struggle, and think about the millions of people all around the world that are struggling also. By doing that I make the world big, me small, and somehow I simplify my problems and my pain. It works for me. It humbles me and gives me strength to hang another IV bag for the night, do another nebulized mask, give another insulin shot. That human connection frees me from my own responsibility. It's just me, and million like me, I think, doing what we need to do to stay alive.

Today, September 30th, is our 3 year wedding anniversary. We had such a great day 3 years ago. A wedding filled with all the love and joy that we could have asked for. The perfect day! I remember the promises that we made to each other at the alter, and it is those promises, those vows that we are living by now. We are being tested, but as I always say, we are strong together in sickness just like we were in health.

There is so much good in my life, and though I see it and feel it, often it is drowned out by the heaviness of today. I don't want it to be, and I work hard to remember that I am lucky and that good things are coming. But it is getting harder and harder to find physical relief, which means that it is getting harder and harder to find emotional and mental reason. I am ashamed of this sadness I am feeling, since I am so lucky, and have it in me to fight much much longer.

Flowers from Martin for our Anniversary!

Memories....

In the form of pictures:

(totally random randoms)

1982 Warsaw: My dad, brother John, and I

Paris: Summer 2003

Martin fishing, lake Ontario, right in the city, 2009

How to enjoy life 101

Scarlett,

It is fair to say, that although you might think for a long long time that your mommy and daddy have it all figured it, we don't. I hope it takes you years to figure this out, but eventually you will, we all do. Saying that, I am not going to pretend that I have all the answers and all the lessons. Hardly, but I have a few. Something that I want to pass onto you, in writing, officially, is what I call How to enjoy life 101. Of course I know you may think, how could I possibly have something like that figured out. I know, I know, but you have to say that being able to find happiness in life's most challenging times makes me slightly educated about the topic. Let's just say that I probably would not be comfortable teaching a PhD class on the subject, but a bachelors, yup I could. 101.

This is for you. I hope it helps you live your life as it comes. And life does that, it comes when and as it pleases. Sometimes you will be amazed at how perfect it's timing is. Like magic. Sometimes you will think that things come in three's, only to realize that it's fours or fives. Sometimes life is just incredible, and sometimes it's just plain hard.

So here we go bunny:

1. When things are terrible, wait a day, things will change
Your dad and I have learned this over and over again. Now, after a lot of practice, we actually believe it. The one constant in this life is that things change, and just as they change for the worse, they also change for the better. It's knowing this, and believing this that will keep you focused, content, and calm. I have written this before, but I will say it again, if someone told me last year that my life would be this beautiful right now, well I would not have believed them. Especially if they would have told me that I would be waiting for a lung transplant. But things went from hard, to harder, and then to the unthinkable, and somehow, we woke up one day with the most beautiful little baby we could have imagined, in love, dreaming of what's to come next. The biggest gift to us then, was believing that there was another day after the worst day, and then another and then another. Before we knew it, a new day came and it was a good day.

2. Find people that complete and inspire you, move away from the others
Friends are really important in life. Good friends are essential. There is a truth in friendship that you will rarely find in family. Family is a different topic, will tell you about that later. Friendship however can also be toxic, and being able to surround yourself with the right people, for the right reasons, is a great window into enjoying your life and being happy. I have learned many things about people from being chronically ill. Many things. Mainly, that when things in life are okay, the distinction between good friends are not so good friends is a small one. But when it comes down to needing people, and having a hard time, the people that you may have in your life for the wrong reason, become toxic. The falsehood of that friendship becomes taxing when you need them to be there for you, and vise versa. So, from experience, keep a select few close to you. Let them in, and don't pretend. But let go of the idea that you have to be friends with everyone. It only works when life is perfect.

Remember however, that you need to be there for people just as they are for you. Friendship is never one way, if it is, it's not the right type of friendship. But your life, with good friends around you. will make it more amazing. No matter how sick I am, or how well I am, certain people have always been around me, continuing being as they always were. That's a true gift those people. My CF is a side note to them. They know me as an artist, and a wife, and more than anything as their friend. They do not know me only as someone who is sometimes sick.

3. Don't compare yourself to others
To further the above point, the worst thing you can do is compare yourself to other people. A sure way to be unhappy and to enjoy nothing. Being your own person, setting your own life goals, and being happy for others for their success regardless of where you are in life is very important. An example of that in my life is comparing myself to other people that have Cf. It's an impossible thing, yet it's something that people always tend to do. It's something that I battle with respect to making friends with other people with CF. I have always tried hard to be my own person, do the things that I wanted to, and at the speed that I chose. Comparing myself to people that were frozen in fear due to their illness (this is by no means everyone with CF or chronic illness), only made me doubt what I was doing. Was I too optimistic? Was I in denial about what CF really was? Over time I learned that people are different. Some handles things better than others. Some do everything as they should, and still lose their battle. Some do very little and are bitter, and somehow are able to pull through. Comparisons of any sort never did me any good. I knew what I wanted from very early on. I wanted to go to University, get married, have children, own a house, enjoy cottage life, enjoy the outdoors, enjoy the arts and the small things that life had to offer. People have different goals and different objectives, so how can we compare ourselves to anyone. Stay focused on you. Be happy for others. Remember what you want to achieve.

4. Find work, find meaning
This is pretty old school, but I live by this rule. Work. No matter what you can do, or how much you can do of it, always work. I don't mean have a career. Of course find what you love, yes, and do it, and hopefully get paid well to do it. Of course. What I mean here, is physical work. The more you sit around, the less you will get out of life. There is always plenty to do. Around your house, in your house, and when you have done it all, and it's not enough, there is your community. Work will keep you better rested than sitting around. It will make sleep better, make you appreciate true rest and relaxation, and keep any sort of depression at bay. I believe that it's a lack of physical work that has made North Americans so prone to depression. We have maids to clean our house, a car wash to clean our car, someone to mow the lawn and help in the garden.....and as we work in our offices, we get more and more over-weight and more and more tired! Take it from me, taking care of the things that are around you, doing some work, will keep you happier, and will help you find meaning in everyday life.
I used to do much more than I do now. But even in this condition I do the things I can. Do laundry, fold, tidy up around me. It keeps me going. I know it sounds crazy, but it's one of those things I just know.

5. Depression vs. unhappiness
Know the difference. You may never face depression in your life, but you may. And there is a huge difference between a chemical imbalance and a bad day. Depression should be treated, by therapy or medication. A bad day or a bad week, or even a bad month will pass with the right attitude and work. Knowing the difference takes time. May take help. But never be ashamed to get that help. I know too many people that spent years trying to fix depression in a way that they would never try to fix a broken arm (by wishing it gone). And after years of suffering they got help, and with the proper help they finally gained their life back. There is no shame in getting help. At the same time, what may seem like depression might just be a slump. The greatest of feelings is when you can overcome a hard time and rise above it. Work on things that you never thought you could fix, and learn from yourself. The key is to listen to your inner voice, and be true to it.

6. Everything is relative, keep life perspective, enjoy today
There is something to be said to staying positive and focusing on today. It is the way that I am getting through this wait right now. One day at a time. A good day is a good day. A bad one is just that. A bad day no longer spirals into anything else but what it is, a bad day. While a good day lingers.
Happiness is relative, and another reason why you should never compare yourself to others. What someone else might find to be a good day, might be your worst. That's just life. So, focus on you. It may be hard to keep things in perspective sometimes, when things are not going as you planned, but the joy that you will find in life will not be from exceeding your own dreams and expectations easily, it will be from the tough times that you got through and triumph over. From the hardest of times, to your small victories, it's the times that you fight it out, that will remind you of what's important. Do yourself a favour, don't let things get hard before you remember what is worth fighting for. Remember it everyday. Keep the little things in perspective. Little problems, little mistakes, little people.

7. Feel lucky
When you wake up. Feel lucky you woke up.
When you fall asleep, have a good meal, have a meal, have a drink, have a kiss, get a smile, pet a dog, see something beautiful, see something strange, or ugly, or whatever, when you are able to see, walk, stretch, run, skip.....feel lucky. You are. And when you can't do one of those things, or many of those things, think of all the things you can do. There are so many things you can do. Some really really well!

8. Be Brave
Even when you are scared. Be brave. Whatever it is, you can do it. Manage it. Overcome it. Sometimes things do get scary, and the only thing that you have in your pocket that is yours and your alone, is that you are brave. Whenever you are scared, close your eyes and open your mind, and be brave.

Your mommy may not know everything, but I know that I work hard to be happy, and I have found happiness in the strangest of places, at the darkest of times. I know that this time waiting for transplant, it will change, it will pass. I know that the people that are around me are here to inspire me and help me, as they are. I am doing my best to not compare myself to others. I work when I can and it helps me stay active and productive. I know that my bad days are just that, but I watch for signs when things may be too hard to handle, and I will get help if need be. I enjoy the good days, and keep things in perspective. I feel lucky to have a handsome husband, a beautiful baby, a loving family, and most of all the science at my disposal to give me new lungs. Wow, I'm so lucky to have that chance! And lastly Scarlett, I am brave.

Scarlett Stats....

Name: Scarlett Anna Ritchie
Birth date: July 17, 2009
Birth Weight: 8lbs 10oz
Time: 2:58pm
Birth length: 21 inches (at hospital) 19 inches a few days later at her doctors LOL!!
Weight leaving hospital: 8lbs 3oz
Apgar: 9/9
Size Percentile: 50th
Hair colour: dark, full
Eye colour: blue
First smile: just over 4 weeks
First giggle: just over 7 weeks
Hair: still dark, less and less!
Eye colour now: light blue
Today's weight (Sept.14th): 13lbs 8 oz.
Size Percentile now: 98th
What is she doing today?
Scarlett is now loving to smile and giggle when we speak to her. She does not love to be held. She likes to sit in the hushamok, or sit up on someones lap and watch what's happening around her. Generally very independant. I sometimes wish she was more cuddly!
Scarlett never cries for any other reason than hunger. That's pretty much every 4 hours in the day. And when she's ready, she lets it out!! She feeds quickly and is asleep by the time the bottle in finished. She is eating about 5oz right now per feeding. She feeds 4-5 times per day.
Sleeping is Scarlett's speciality. From the beginning she slept 4-5 hours around the clock with quick feeding breaks. At about 5 weeks she went 6 hours at night without being fed. Within about a week this became 8 or 9 hours. Last night for example she went to bed at 8pm, and woke up at 7am. Dr.L has told us not to wake her up for feedings from very early on, since she was gaining weight quite quickly, and we were happy to comply!!
Towards the end of last week we noticed that we don't need to hold up her head any more, and this is really nice, since she's too heavy for me to hold otherwise. Now I can sit her up on my leg, and it's so nice for me!! I can actually hold her, without getting breathless.
Scarlett's fave time is the bath, by far. She loves it!! Below is a picture of a recent bath. Martin is the bath man. I get the chance to bathe her sometimes but it's often too much work for me, so I watch or wait for her to be finished and kiss her clean head. So cute!!

Martin likes his after work time with his daughter, so I am happy to give them that time together. It's very cute!!

Scarlett has a few favourite things. She has a lady bug that plays 'You are my sunshine' that is like baby heroin. She is totally addicted to it. When we play it, she freezes and listens and smiles to her little friend. It's super funny, may be more for us than for her. Her other fave things are her new comforter, which might explain he 11 hour nights. It's pretty comfy and she's in love, we can tell. A close 3rd, for sure, is her babcia, or the milk lady. Scarlett knows that when my mom is in sight, the milk is on it's way. And let's face it, our kid is all about the milk!! Makes me a little jealous, but whatever makes our Scarlett happy is good enough for me.

Below is a picture of Scarlett and I having some rest time together. This is from August 30th.

One of the most fun that I've had with Scarlett was when her and I took a bath together. We did so in our ensuite bath, so it's a large jet tub, which for Scarlett was like a swimming pool. She loved it, and so did I. It made her so light for me to hold, that I could really enjoy her. She swam and swam, and then got really hungry and ate up a storm. It was amazing. Below are a few classic pics from that. I only put these on my blog, not my facebook, as I am sorta in them, and would not want those just to pop up on someones wall =)

As you can see, she is one happy, and one chunky little monster in the tub!!So there you have it, more than you ever wanted to know about our Scarlett. She is such a joy, such a pleasure, and since I rarely write specifics about her, I thought I would do so in this post.

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.

Some Pictures

August 25th 2009, 5 weeks

Your daddy, my hubby....

Scarlett,

There are a few people in this world as good as your dad. I know I don't have to tell you that. I see how you two look at each other now, at this tender 6 week mark and I cannot imagine the love that will grow from here.

He and I. Your dad and I. There is a lot to tell you about your dad and I. The most important thing I can say, is that before we met each other, we were truly half. Half a person, half a soul, half a life. It's nothing that we sough after, I assure you, we are both independent people that never wanted to count on anyone as much as we have ended up counting on each other. But that's what happened.

When we met we fell in love quickly. It was like a clock started when we met, and the clock started ticking, and we were off. Every minute things changed for us. Quick quick. Our love flooded our lives, we flooded each others lives, sometimes to the disdain to those around us, and there we were, married, house, all of it. Our lows were as high as our highs in the first year of our love, and the second year (which was pretty much the first year of the marriage). We did everything with full throttle. We both learned so much during this time. About so many things; Business, real estate, friends, love, family.....it was a roller coaster. I look back now and I think it was so great. Even the rocky parts. So great.

There was a point last summer that things became very hard due to so many factors. Mostly my health and infertility, and just this doom that seemed to set in over us. It was all too much may be. We had hoped for a baby (you!) and things were so hard. We had hoped for my feeling better than I was (though we knew so little about what was ahead in the year to come) and it all just seemed still. We were both still. This tested us. It all tested our marriage. I remember when we decided to fight through it. It was not a select moment in time, but I remember your dad and I having to accept that our life may not get easier, not for a while, and we decided to face it together. Not that we were ever going to separate, but really we were newlyweds, and we were coming against all these larger than life stumbling blocks. I just remember us accepting things but choosing to want more. It was a big moment for us. Right now, when we think back to a year ago, may be a year and a half ago, we think, wow how things have changed. Look where we are, it's amazing.

What's so funny, is that now your dad and I are faced with more tests and more challenges that any couple needs for a life time. But it is now that our marriage is like a shiny hard rock. One that may chip, but will never fracture. Your dad and I have become a true team over the past year. Half way through this year, when you were well on your way in Beth's belly, our world was shattered with my becoming so ill. But somehow, we handled it like veterans, from beginning to where we are now. But the last 6 months, well, we've lived a life time. Our marriage has lives a life time.

Your daddy, oh how tired he must be of my tears, of my cough in the next room, of my fearful breathlessness. Oh how tired he must be. But the man that your dad is, words leave me when I think of describing what I think of him now. When I think about how I would react to be in his shoes, I don't know if I would have his grace. His strength. Your dad has made a career of rubbing my back. My lungs hurt, and my back really hurts as a result, and he's the only one that makes it feel better. His hand is on my back whenever we're close. It's the best. Your dad plans all the things that we will do together after I get my lungs. He makes big amazing plans for the 3 of us. If you knew half of them! I love him for it. Your dad sits in this room with me all the time when he's home from work and lives it with me. Lives it all with me. It brings me to tears writing this, because it is such a sacrifice. No body says it, but the fact is I did not have a choice making CF a part of my life, but he did, and he made it a part of his life for me. No matter what, it is such a sacrifice. And it has been a lengthy one. Today, we wait for these lungs to come and we both know that things will only get better one way, and that's for that call to come. That weight is on our minds, you, our amazing daughter in our arms, and true love, the real thing in our hearts.