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!

the heart mom lunch

On Saturday, I attended a luncheon given by Intermountain Healing Hearts for "Heart Moms". At this luncheon, the guest speaker was Paul Cardall's mom. For those of you who don't know him, he is the oldest survivor of CHD that I know of and he just received a new heart last September. In my mind, his mother is the ULTIMATE heart mom. She has been a heart mom for 37 years. Before the days of internet and cell phones, she had to face the fear of her child's life hanging by a thread and she did all of this not knowing about others who may be living the same fate. Time and time again, Paul beat the odds and is still alive to talk about it. It was great to hear one of the original heart moms tell her story. During her talk, she read this poem and I like to think that this is how it is for Bridger and I.

All is Well

Death is nothing at all,

I have only slipped into the next room.

I am I and you are you

Whatever we were to each other, that we are still.

Call me by my old familiar name,

Speak to me in the easy way which you always used

Put no difference in your tone,

Wear no forced air of solemnity or sorrow

Laugh as we always laughed at the little jokes we enjoyed together.

Play, smile, think of me, pray for me.

Let my name be ever the household word that it always was,

Let it be spoken without effect, without the trace of shadow on it.

Life means all that it ever meant.

It is the same as it ever was, there is unbroken continuity.

Why should I be out of mind because I am out of sight?

I am waiting for you, for an interval, somewhere very near,

Just around the corner.

All is well.

Henry Scott Holland (1847-1918)

Canon of St. Paul’s Cathedral

again, asking for prayers....

Sweet Mason (miracle Mason) who had the heart transplant two weeks ago is rejecting his heart. Now while there are different levels of rejection, it sounds as though his is quite concerning. His mom said that the doctors have begun an intensive five day treatment to help save his heart. Keep him in your prayers that this will give his body what it needs to keep this miracle heart. He was doing so well, but of course there is always a catch. Mason keep strong and know that all of us (here on earth and in heaven) are thinking of you.

4/13/10

I am overwhelmed with a surge of emotions today. Another amazing child that I know has decided that he is no longer meant for this world. And though he is not leaving today, it will be soon. One of the most difficult parts I found about being a mother was ensuring that while my child was unable to speak for himself, I listened very carefully to what he was telling me and expressed his wishes for him. This is no easy feat when the wishes of your child are to essentially insist on no further intervention of the path they are now ready to follow, the path that will take them from your arms, from this world. The mother of this beautiful child is now having to express these wishes and it is causing me physical pain to watch her as she gracefully embarks on this new journey. I have only walked in my shoes through a similar journey, so I will not pretend that I know how this mother feels. But watching another family move through similar circumstances re-opens the wound that I have been trying so hard to keep closed. I find myself falling apart at the seams not only for my loss of Bridger, but also the loss that this family will soon know. Now I don't mean to be misunderstood, I know that each and every moment I had with my child was a blessing that I am grateful to have received. But knowledge of my blessings cannot erase the pain. It cannot fill my empty arms. At night I hold a stuffed moose that Bridger got when we were in the hospital. I hold this specific animal over the others because he is close to the size Bridger was when I last held him. This may sound crazy, but there are times I need to pretend I can still hold him and though I know that I am only holding a stuffed animal it helps to ease the pain for a short time. Please keep this sweet family in your prayers as they continue on a very difficult journey. Please, please hold your sweet children close to you tonight with the knowledge that others wish they could be doing the same. Bridger, I love you and though I would never ask you to return to this world where you endured so much pain, I long for the day when we are together, as a family, again. Goodnight, I love you.

8 months ago

About this time 8 months ago, Danny and my parents were arriving to Texas Childrens Hospital to find me holding the lifeless body of my sweet boy. I remember it all so vividly, yet it feels as though it has been an eternity. Bridger- I love you soooo much!