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!

Calling all HEART friends

Today while I was at work, I received a phone call from my sister. She told me that Mason (miracle Mason) was getting his heart today. Initially, they thought that he would need a heart-lung transplant, as Bridger did. But upon evaluation, Stanford decided that would be able to do only a heart, but just to his one good lung. So Mason and his mom have been in California waiting for a heart and today their prayers were answered. I had a daydream a couple of days ago that Mason was receiving his heart, but little did I know that it would come so quickly. While I am overjoyed with the news, my heart is quite heavy for the family who gave this generous gift of life. I can only imagine the strength that it took for them to give part of their child in such a way. To that donor family: I KNOW THE PAIN OF LOSING YOUR CHILD TOO SOON. I will never be able to express what I feel for a family who was so giving in such a time of sorrow. To Mason's family: I know, that while you still have struggles ahead, you will never forget the blessing of the gift you have received. Mason: stay strong, we are all praying for you!

PICU parent hour

Every Thursday, the Pediatric ICU at Primary Children's host a luncheon for the parents of patients in the PICU. Each week they have a different speaker to give information and assist with having a child in the ICU. Well, today, I was the speaker. I didn't give a speech so much as I talked with the other parents there. There were two families that should not be return customers, another mom who was waiting to find out if she would and a fourth that I knew from when Bridger and I were living in the PICU. I hadn't really written down waht I would discuss and since it was a smaller group, I decided it would be better to get a dialogue started. Each of the parents told me the story of how they ended up in the PICU and how their child was currently doing. One of the families was actually vacationing from Houston when their child became violently ill. I had talked with the dad about how Bridger had died at Texas Children's last summer. At the end, I don't know if I served the purpose I was signed up for, but we discussed the stressors of ICU life and how to cope. I hope that my being there and caring about their stories helped to provide some amount of relief to each of them. I know that me sharing my story about my beautiful son helps me get through the days. On a side note, Bridger's physical therapist gave a presentation today in which she used Bridger as an example. I like to think that it was because he was her STAR pupil. She will be sharing the information with me as I start speaking at different places to help spread CHD awareness. Bridger, I miss you so very much! It seems as though just yesterday I was holding you, but at the same time it feels as though it has been an eternity. I hope that you are behaving for grandma Jean, she will tell me if you are being a turkey! Make sure she gives you some of her yummy waffles if you like to eat now. I love you! I love you! I love you!

CHD conference

This afternoon, I attended part of the Congenital Cardiovascular Disease conference at Snowbird Ski Resort. This conference was intended for the medical staff caring for CHD kids, so there were many familiar faces. The main lecture I went for was the point/counterpoint of offering palliative care to HLHS kids. Though Bridger was not HLHS, I think this is a sensitive topic for any mother of a chronically ill child. Bridger's cardiologist, Dr. Puchalski represented the topic of offering palliative care to those diagnosed with HLHS and Dr. Birch, a CT surgeon represented the topic of not offering palliative care to the patient and moving right into surgery. I must clarify that these views are not specific to these physicians, but rather presentations that they were asked to give at this conference. Both of the doctors had strong points to offer. Dr. Puchalski pointed out that this is not a right or wrong answer and should be interpreted as a way to improve communication to parents of children with CHD. He offered many statistics on quality of life and development on children with HLHS. Dr. Burch presented the fact that if we only treated based on percentages, we would never have found cures for various cancers or other diseases. Both presentations were great and at the end, the microphone was open for comments. Two physicians stood and made their comments and when they were done, I walked up to the microphone for a comment of my own. I was so nervous and my whole body was shaking, here I am in front of a room filled with some of the brightest minds when it comes to CHD. I told them I was there speaking as a mom and continued on to say that we, as parents, rely heavily on the information given to us from our healthcare providers. I agreed with Dr. Pulchaski's point that parents deserve information, both positive and negative, regarding the child's prognosis and that this information must be free from the informant' s own bias. In the end, it is the parent that must live with the choices that they made about the care of their child. So, still shaking, I sat down. Dr. Cowley came to the microphone to ask the physicians at the panel a final question: If you had a child diagnosed in utero with HLHS, would you terminate it? One of the surgeons from another hospital grabbed the microphone and loudly said "I can answer that". He proceded, with difficulty, to tell about his daughter who twenty years ago was born with a diaphragmatic hernia. As a physician, he knew that the prognosis was not good, but they opted for surgery. She did not tolerate it well and he and his wife had opted to put her on ECMO (one last chance to live), she was never able to come off of ECMO and she died. He advised his fellow physicians not to answer that question unless they had personally lived the same situation they were discussing with their patients and parents. I was so grateful for this response, because it is absolutley TRUE! Even now, being a heart parent and knowing the life that may be lead, if Danny and I had another child and it was diagnosed with CHD, we would not be able to predict our wishes for that child. Sorry this was a long one.