What a day.

Well I worked at PCMC today and it was quite busy. The bulletin board in the CICU was nicely decorated and dedicated to Intermountain Healing Hearts (thats progress!). After a busy day of taking care of amazing kids I was leaving work to go home. The halls were empty, as usual, for the late hour and I am reminded of the stillness of the hospital back in December 2008 when Bridger had a cath and then heart surgery on a weekend because his body would not last much longer without intervention. I remember how I essentially "passed out" and slept on the hospital floor through both procedures because my mind could not tolerate the thoughts of what may come. It is funny how some days I can walk these halls, as I have a thousand times, and be okay. And yet other days, I am haunted by my previous life with our baby boy. With every heart breaking moment I also relive many wonderful moments. I can feel each and every one as if it were happening again, the only difference is that this time I can't hold my sweet Bridger and feel the world melt away. As I continue through the hall, I also remember the few clinic appointments we were able to attend when out of the hospital. I remember watching our caregivers dote on my beautiful boy. He thirived on interaction and always enjoyed talking and playing with those who loved him so much. As I leave the building and feel the air outside, I can't help but thinking that this would be a perfect evening for one or our many walks last May when we were home for 26 consecutive days. This was always a favorite part of the day, we would pack up our oxygen, feeding pump and IV pumps and head out to enjoy the weather. We would walk through different parts of the neighborhood everyday, Bridger loved to study new surroundings, always taking them in carefully. Then we would come home and he would be ready for a nap after a long morning of observation. I hope and pray that I never lose this connection and closeness I feel with my only child. It is these moments that help me to carry on. And though some are painful and heart-breaking, so many more fill me with joy and love that can never be surpassed. Mommy loves you!

Growing up dying.......

Growing up dying.....that was the title of the lecture I attended this morning. A 36 year old woman who has survived Cystic Fibrosis (CF) and two double lung transplants came to PCMCs pediatric grand rounds to tell her story. I have been looking forward to hearing her speak since the schedule was released and I was not disappointed. She spoke of spending her youth being different and living in a hospital for months at a time. The amazing part about her is that she never looked at her diagnosis as "a curse" or as being unfair. She always thought that being born with CF was like being given a special power that she was supposed to use to make a difference, and boy did she. This lecture was attended by many physicians, social workers and nurses. She told us of the wisdom her disease has given her, how she was able to appreciate all of the things that many of us take for granted. She also spoke of the disabilities that were imposed on her by well meaning family and caregivers. In early years, she was never disciplined because her mother thought that she would not be alive for long. In later years, she struggled to learn tasks that come second nature to us, she couldn't do something as simple as making rice because she was always "protected" in her bubble. She speaks around the nation, telling her story and challenging healthcare providers to change their ways of providing care, involving families and patients more in their prognosis. It wasn't until her late teens that someone actually sat her down to discuss her prognosis and, of course, this was quite unsettling news. She then spent the next years mourning the loss of things she would never have, but this mourning helped her to move on and make a difference. And now look at her, SHE SURVIVED TWO double lung transplants! As I waited in line to speak with her after the lecture, a surge of emotions washed over me. I was so grateful to this living, breathing woman for giving all of our children a voice. Yes, I am trying to do my part, but in ways, people still just see me as the greiving mother. Today we had another survivor telling her side. She talked of being prepared for life or death, it was the in between that scared her. She discussed how she worried more about her parents than she ever worried about herself. There were times she would even hide her symptoms, thinking that she could ease the pain of her parents. I know this is long, but one last thing that I am very excited about. We all know about DNRs - DO NOT RESUSCITATE- this is a form we fill out for ourselves, our parents and sometimes our children. But this young woman is part of a movement to change that DNR to a AND- ALLOW NATURAL DEATH. I feel like this would be a huge step in the pediatric world, we all want to feel as though we have done all we could for our children and somehow the idea of withholding treatment or NOT RESUSCITATING leaves a sick feeling in all of us.

Also, I spoke at PICU parent hour again today, it was great. Many of the families were heart families, so I was able to relate quite a bit to their situation. We all talked about the struggles of hospital life, but also about making sure to enjoy those moments of joy and love. I was able to talk about Bridger (which I LOVE) and tell a little about our story. Telling it out loud always makes me appreciate everthing that I had and have, I hope that it helped these families realize the blessings in their lives.

Maybe this will help....

Well, I have been stuck in limbo for a bit now, but hiding it well. A swell of emotions seems to be constantly rushing through me, yet I am unable to identify a specific one. I have not been sleeping well and though I try to blame it on Danny's persistent cough, deep down I know that a cough is not the culprit here. Thankfully, those around me have put with me thus far. My best friend let me clean out her entire basement in order to help purge my system and release some of the restlessness. I know that this sounds more like a favor to her, but she was very gracious as I threw away items that she has held close to her for years. After eight hours of tossing, reorganizing and cleaning, I thought that I may have cleansed my system for a bit, but today it returns. I tried cleaning out my closet tonight, only to find that I cannot give away shirts that I wore while Bridger was alive. They don't fit me anymore, but I was wearing these items as I held my most precious gift. And of course, the snowball begins. I start to think about our families and how most of them never saw Bridger and his amazing spirit in person. I do not regret our actions of protection, in fact, I know that our germ free environment helped to give us the time we had. But it does sadden me to know that, for some of his aunts and uncles, they only saw him when he was sedated and hanging on to the edge of life in December 2008 and then again at his funeral. For years I have been in love with watching all of our nieces and nephews grow and become the amazing people they are today. And when we got pregnant, I could not contain the excitement I felt thinking that now our parents and brothers and sisters would be able to see our child emerge in the same way. Every time we entered the hospital and every time Bridger was wheeled down the hall for another heart surgery, I did fear for his life. But somehow, I always thought that he would be the one to beat the odds. Even going to Texas, I thought that he would amaze the medical world by thriving after a heart-lung transplant. I always dreamed that in a couple of years, Bridger and I in our Ute apparel and Ben and Angela in their BYU apparel would go back to Primary Children's and our two boys, who beat amazing odds would RUN through the PICU and I would introduce Bridger to all of the nurses and doctors and other staff who helped him get to where he was that day. I still have this dream, though I know Bridger and I will not be returning to the PICU in this way. Bridger, although you see me running so fast down here, PLEASE know that I am not running from you. If I am to be here without you, I will do my best to make a difference in your honor. I am just trying to make you proud and keep what is left of my sanity at the same time. Please know that all that I do, I am doing for you! I LOVE YOU!

P.S. Give grandma and nana a kiss, this Sunday is mother's day!