Another Perspective

From The Other Half

(AKA My Twin Sister)

Sixty-five roses.

That’s how you help train a small child into maneuvering their tongue and lips to form the difficult sound of Cystic Fibrosis. You know that I know that, so why do doctors pick such difficult names for diseases that affect children who can’t even say spaghetti or napkin correctly?

Dan, it’s taken me a long time to decide what story I wanted to share with you. How do you summarize a life shared?  Really, my life would not be the same without you. You have given me the confidence to wear a large range of hats. We started our lives together in the safety of amniotic fluid. Quickly I evolved into personal translator when even Mom didn’t realize that opicl was Popsicle. As we grew older I changed my hats to meet our needs from homework provider to your very own donkey.  I am sure the list could go on but that is not the point of this story, nah this story is about you and what hats you have worn for me.

On April 2nd, we both came screaming into this world, you came first and I followed shortly.  The minutes in between really do no matter. What is important is that you came first, and thus empowering you with bragging rights for the rest of our lives. The significance of these few minutes apart officially established you as my older bro. This also decided you would have to accept the responsibility of protecting me. In one moment, in one doctor’s act, you became responsible for me by the universal act of big brotherhood.

Now, every little sister knows big brother is code for personal tormentor. It means you have someone to punch you, to make you cry and place blame on. It also means you have someone constantly watching over you, protecting you when you don’t even know it. Mom never had to worry about chastity belts or bullies in high school… we had you.

I remember one moment during high school that made me realize how far your ever protecting shadow went. We were sitting in the front row of our grade 9 science class. I was clearly paying attention to Dr. Churkas when you nudged my arm. Slightly annoyed, I turned and noticed you were pointing to a section of our science textbook that read CYSTIC FIBROSIS. I’m not sure if you found it by accident or you went looking for it but there in our crisp new textbook was information on Cystic Fibrosis. It was the first time I had ever read about CF.  Wikipedia was floating around in someone’s mind waiting to come to fruition and the thought of finding a book about CF had never occurred to me. Seeing the text on paper made CF real. At the end of the short summary, a single sentence stated, the average lifespan for children with CF was 16. You and I were just 14.

I often think of this moment.

It’s the day that I started to really understand. It was also the day that I realized how much you deal with. That somewhere under your big brother armor you carried the weight and not just on your shoulders but your heart too. You never complained. You never said why me. You never showed fear. No, instead, you made the choice to always be my big brother first. To protect me from all the scary things that life had to throw at us and you shouldered it, including your own reality. You could have played the pity card to get the front seat of the car, but instead, you always played the big brother.

There is one other story that I felt the need to share. This one takes place about three years ago after your 2nd transplant. I had come to visit you in the ICU and was reading you some of the messages from the “DAN IS MY HERO” Facebook page. While reading, I could see your chest moving up and down, hear the rhythm of your new lungs working so hard to take in air. Slowly you would drift off to sleep, your breathing slowing, slowing, and slowing until… it stopped. An alarm would sound; I remember waiting, waiting to see your chest rise, for the moment your brain said breathe again but nothing happened. I guess any other person would have grabbed the doctor and freaked out but I’m your little sister and like a well-trained sister I simply just yelled at you.  “ DAN BREATH!!”  It was like my words were an electrical shock because you sat up in bed, blue eyes wide open, and your lungs back into action and a hand gesture that stated ‘keep reading, I’m fine”.  This process went on for a large portion of the day. You would drift off and I would remind you to breathe. The funny things was, even though you were having a hard time, you still would have me read on. Faced with a huge problem or difficult situation you always seem to remain calm and level headed. Yeah, I may have had to reminded you to just breath but that is a day in the ordinary life of us.

I would not be the person I am today without you. You helped mood the caring person I am by shouldering a truth that I was just not ready for yet. You made me realize that I am worth something by fighting off boys who just were not good enough. But most of all you taught me how to be brave, stay focused and keep calm when the going gets tough.

Thanks, big brother,  without you I would not be complete.

Hugs

Your other half

A Little Word From the Creator 

My mom looking back 28 years ago.

Happy Birthday Amy and Dan
Tuesday, April 2nd, twenty-eight years ago just after midnight Dan and Amy were born. I remember I had gone into labor early on April 1st – I was bound and determined that I would not have April Fools babies and made the doctors wait until just after midnight to perform the cesarean section.
Call it a mother’s intuition but I knew I was carrying twins long before it was confirmed by the doctors. I also knew I was having a girl. That same intuition also left me with a feeling of dread as I instinctively knew something was wrong with one of my babies.
Dan was born just after midnight, I remember looking him over, counting fingers and toes, checking facial features and eyes – all seemed well. Ten minutes later his sister Amy arrived and once again I checked her out. Everything seemed in order yet the premonition that something wasn’t right was stronger than ever.
The first feeding a couple of hours later only one baby arrived at my room. I remember asking the nurse where my son was. She said not to worry – he had a condition called wet lungs which sometimes happens and that he would be in for the next feeding. An alarm went off in my head.
Dan never did arrive for a feeding. Later that day I struggled out of bed and dragged myself to the nursery window. I spied him immediately. His face was a purplish red colour, he wasn’t just crying he was screaming, I knew instantly there was something very wrong. I headed out to find the pediatrician who just so happened was looking for me. He told me my baby had an obstructed bowel and was going to be sent to Sick Kids for an emergency operation.
I watched as the nurses bundled my small son up getting ready for the ambulance ride. One of the nurses turned to me and said does he have a name? “Daniel” I stuttered. I knew in my heart that this small little soul would have a challenging life, he was my Daniel in the Lion’s Den.
Later that evening the doctors called from Sick Kids to say the operation had been successful. The next day with an anxious heart I went to visit him in neo-natal intensive care. At this point, I had yet to hold him. I was not prepared for what I saw. He had tubes coming out from every orifice of his tiny body. He was in an incubator and crying. I asked the nurse if I could hold him, she put him in my arms and he immediately went to sleep.
I asked the nurse why the bowel obstruction had happened. She said that the doctors who had come to visit him had tossed around “Cystic Fibrosis”. Somewhere in the back of my brain, I struggled to come to terms with this word. “What is Cystic Fibrosis” I whispered. She said it was a disease where the bones went brittle. It wasn’t until a few hours later while sitting with my pediatrician that I learned she was completely wrong. CF was a terrible disease that affected many organs of the body especially the lungs.
The mean average age for survival for children born with CF was 16. I remember holding him in my arms praying that he would out do these odds.
Dan spent his first two months at Sick Kids. In the years to come, this would be our home away from home. Dan had his first life-saving double lung transplant March 22nd, 2002 just before he turned 17 and his second March 21st, 2010. He is a double miracle. Twenty-eight years old is indeed a landmark that he would never have seen without undergoing his 2 transplants. Today we will celebrate Dan’s life, the joy he brings to others and also pays tribute to the donors who gave the greatest gift possible – the gift of life.
Looking at his blog site just a couple of minutes ago I was very proud to see that in the span of a few weeks his words have been read by close to 2000 people from different parts of the world. Dan’s goal (challenge) is to circulate it around the world. At the moment more than 4000 people are waiting for transplants in Canada. Last year only 1803 transplant was performed – many people die while waiting on the list. Unfortunately, Canada ranks relatively low on the participation level of donor consent compared to other countries. It is our hope that through continued education and awareness this number can be increased.
I would also like to pay tribute to my beautiful daughter Amy, Dan’s twin sister. I had always known that I would have a girl. Amy is my princess. Her compassion, will, understanding and strength are unlimited. She and Dan share a very special bond that has helped him through many of his challenges. She has spent many hours by the side of his bed nursing him back to health. Amy never jealous of the attention given to Dan has remained his number 1 fan.
Amy’s wish this year for their birthdays is as follows:
I ask for friends, family, and whatever social media that you have around to you help celebrate Dan. He celebrated his new life by sharing his story on his anniversary. Now it’s time to celebrate the day that he entered this world.
If you read Dan’s story he only asks for two things, share a moment that you have experienced with him and post it on his site, second, think about the gift of life.
Since his anniversary I have started the “Pass It On” campaign. My goal is to find 52 new organ donors before our 28th birthday that is coming up on April 2nd. This Thursday, a group of friends and I will be hosting an event at Yaggers, a bar in Vancouver. Anyone who is willing to become a donor can celebrate with Dan’ favorite whiskey Jack Daniels.
Now, I know many of you can’t make it to Vancouver, I understand that, but what you can do is take your own photo and posted on the Pass it On Facebook page (see link). Dan hopefully won’t see that page until April 2nd (hence why this is a closed event) but please feel free to invite anyone BUT Dan…
WHAT YOU NEED TO DO:
1.)Write down the message Pass it on
2.)Take a photo of yourself (big groups are MORE than encouraged)
3.)Post on the follow facebook page
https://www.facebook.com/Agree.to.pass.it.on
5.)Bonus points to those who take a shot of Jack in their photos!

Here’s wishing my two awesome children a very Happy Birthday, may we all live and enjoy every moment to its fullest!!!!
Love You
Mom

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Another Perspective of My Second Transplant

I just wanted to share my mom’s perspective of my 2nd transplant.

TODAY WE CELEBRATE DAN’S ANNIVERSARY WITH LIFE

Today is like no ordinary day, in fact, today is quite an extraordinary day. Today we celebrate life, new beginnings and the fact that miracles do exist. Today is my son Dan’s anniversary with life. Eleven years ago ( March 22nd, 2002) Dan underwent a double lung transplant at Sick Kids which saved his life. He was in the end stages of Cystic Fibrosis, a terrible disease that targets the lungs. The doctors had already warned us to prepare ourselves for the worst…how does a mother ever imagine losing a child? In the wee hours of Friday, March 22nd, the transplant team woke Dan and me up with smiles on their faces, “We have Lungs”.

It by no means was an easy operation, lung transplants are very complicated and are among the riskiest of transplant procedures. Dan was extremely weak at 15 he weighed a mere 30 kg. But Dan is no ordinary person. He is by far the bravest individual I know. His determination and love of life pulled him through not only the operation but the next 6 years which were relatively uncomplicated.

It was most unsettling in 2009 when we discovered Dan’s lungs had gone into chronic rejection. The Doctors do not know why this happens, but the hard facts were if Dan wanted to extend his life he would have to endure another transplant.

Second transplants are definitely more complicated, yet Dan was determined to overcome all and any obstacle that stood in his way. Dan went back on the list June 2009. The months ahead were very challenging, Dan was now on oxygen 24/7 and needed a wheelchair to get around. We prayed for new lungs.

March 20th, 2010 Dan knocked on my bedroom door just before midnight. “Mom we have to go”. Waking up from my sleep I remember thinking where are we going? Then it dawned on me, Dan had received a call from the hospital. I jumped out of bed, got dressed and with Amy (Dan’s twin sister), we raced to the hospital hoping that this would not be a false alarm. We had experienced a false alarm the month previous. The disappointment it leaves you with is hard to explain.

We got settled in a room and began the long wait. The family had gathered and for the next 20 odd hours, we struggled to keep our minds off the task that was at hand. Dan was going into battle and we prayed for his success. Finally just before midnight as the clock was creeping into the next day, the doctors came for him. The hardest moment ever is to watch Dan disappear behind the OR doors never knowing if I would see him again. However Dan made it easy – stoic and strong – his blue eyes determined I knew in my heart he would survive.

The operation was a success, in fact, it went better than the doctors first had anticipated. Before long we were in the recovery room watching in amazement as Dan with paper and pencil in hand wrote out a list of instructions of things he wanted to be done.

Looking back it wasn’t all the easy. There were many hills and valleys during his recovery time. I remember many frustrating moments when the doctors had no answers as to why certain things were happening or not happening. I still remember the day I left the house in the wee hours of the morning, driving to the hospital in hopes of catching the doctors on their rounds to ask why Dan wasn’t getting any better. I wanted to scream when they shook their heads and said they didn’t have any answers. I was driving back home coming along St. John’s Sideroad when a black car waved me over. Of course, I had not been paying attention to the speed and a stern looking lady police asked me if I know how fast I was going.

The tension and stress from the last month poured out as I started uncontrollably crying. I told her about Dan. She went to her car, came back with a ticket which was for the minimal amount. She asked if there was anything else she could do for me. I immediately told her about Dan’s and my endeavors on educating people about the importance of registering their donor consent with Trillium Gift of Life. She gave me her email address and within an hour she had posted the information on every police station in York Region!!

I hope that you can take a moment today to reflect on your life; we sometimes take it for granted. Dan’s philosophy is to live each day to the fullest. He is truly a remarkable person. I am proud to say he is my son. He has taught me how to be strong in the face of adversity. He never complains about his life, has an incredible sense of humor and takes great satisfaction in playing tricks on me. Dan embraces each day with eagerness. He loves adventure and is not afraid to look fear in the eye. I think we should all adapt Dan’s attitude,

“I take every day and fill it with as much as I can. We see problems as stop signs when we should really see them as guidelines”.

Unfortunately, this anniversary also holds sadness. Somewhere out there are two families who lost a loved one. I always pay tribute to them, thanking them and the donor whose incredible gift has made Dan’s life possible. We encourage you if you are not already a listed donor to take some time to consider becoming one.

There is a song out by Josh Groban called Brave (You’re my reason to be BRAVE) whenever I hear it I think of Dan who despite his times in the Lion’s Den has managed to overcome his challenges.
Happy anniversary Dan…..I love you!
Mom

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